Posts belonging to Category 'Crohns Symptoms'

chocolate or soda pop problems for anyone?

Question:

I also have  achieved and remained in remission using a modified diet (along with Chinese herbs). Chocolate, soda, and all dairy products were the  very first to be eliminated. These are among the worst offenders.   For your own sake, don’t pay attention to the teachings of the conventional medical establishment.  They will tell you that diet plays no role in IBD.  This is pure, absolute, 100% unadulterated, hogwash.  Diet is a very big factor in IBD!    

Response:

This is dangerous and irresponsible! I have never heard ,or read,of any "conventional, establishment" Dr. saying anything of the sort! They all make it clear that people vary, and what works for one will not work for another! Give me one good reason why someone without a lactose intolerance should avoid dairy products. By the same token, if you have a lactose (or gluten, or anything) intolerance you will have trouble with it whether you have IBD or not. The problem here is that someone may not recognize your ignorance, and ill will. They may actually pay attention to you, and suffer for it. Boyd — "The cure for boredom is curiosity. There is no cure for curiosity."

Response:

I agree with Boyd on this issue. When I was first dx with Crohns, they removed dairy from my diet even though it was the only thing I had been able to keep down for about a month.  Milk actually helps my Crohns symptoms not the other way around. I do have a problem with sugar but that is because for family history of diabetes and steroid induced diabetic incidents. I have not noticed a correlation between my symptoms and caffeine. I might have to explore this for myself. (Unfortunately, plain water makes me upset to the stomach and always has.  And I just cannot drink enough juice to make up the liquid intake that I should have.  And I hate tea and coffee. Oh Well.) Every person and their disease is different.  But it can be worth exploring things to see if you personally benefit.  Do not take anything a the absolute truth.  Every situation is different. However, try to keep an open mind. Debbe

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I love it too, but chocolate, coffee, tomato sauce and spicy foods will do me in if I’m not careful. – Jeff – Hide quoted text — Show quoted text – I love chocolate but eat it rarely anymore since it not only makes me feel bad, it gives me diarrhea.  I don’t drink sugared sodas so don’t have first hand experience with that. ~~~~Pat CD Class of 98 "newsgroupie" wrote I’m a fairly big chocolate fan. But if I load up on the sugars then I think it gives me more D. Not sure. Still experimenting. Not really wanting to give up chocolate. And how about pop? It’s got a lot of sugar too. Can too much sugar be just as bad as some other things, such as dairy? (depending on your particular body’s reaction) John

Response:

Oh yea, sugar, chocolate, soda pop… all big problems for me.  I don’t eat them anymore (I’ve removed a few other things from my diet as well, including all grains and liquid milk).  I have maintained a nice remission for 4 years this way. :-)  Exercise, positive attitude, and stress maintenance is a major factor in staying well, too. – Mike (no x in domain if replying directly) – Hide quoted text — Show quoted text – Sugar (or its by-products) are what the "bad bacteria" eat, so the more sugar in your system, the more they can reproduce and give you more symptoms. -Vanessa, who tries to curb her sweet tooth I’m a fairly big chocolate fan. But if I load up on the sugars then I think it gives me more D. Not sure. Still experimenting. Not really wanting to give up chocolate. And how about pop? It’s got a lot of sugar too. Can too much sugar be just as bad as some other things, such as dairy? (depending on your particular body’s reaction) John

Response:

I know that chocolate makes my UC worse, and I don’t drink soda for the same reason.I assumed that it’s the caffeine and carbonation. I drink lots of water and a cup of decaffeinated tea or two each evening at work, and occasionally (when we go out to eat) I’ll have an iced tea. Easter means lots of chocolate….and I guess belly aching tomorrow!! Katie …finding it hard to say no to Cadbury..

Response:

Sugar and refined carbohydrates are bad stuff……Stay away from them as much as possible.The evidence against sugar levels causing degenrative diseases is really stacking up.

– Hide quoted text — Show quoted text – I’m a fairly big chocolate fan. But if I load up on the sugars then I think it gives me more D. Not sure. Still experimenting. Not really wanting to give up chocolate. And how about pop? It’s got a lot of sugar too. Can too much sugar be just as bad as some other things, such as dairy? (depending on your particular body’s reaction) John

Response:

I love chocolate but eat it rarely anymore since it not only makes me feel bad, it gives me diarrhea.  I don’t drink sugared sodas so don’t have first hand experience with that. ~~~~Pat CD Class of 98 – Hide quoted text — Show quoted text -"newsgroupie" wrote I’m a fairly big chocolate fan. But if I load up on the sugars then I think it gives me more D. Not sure. Still experimenting. Not really wanting to give up chocolate. And how about pop? It’s got a lot of sugar too. Can too much sugar be just as bad as some other things, such as dairy? (depending on your particular body’s reaction) John

Response:

Chocolate is a known laxative. Take it easy with the Easter egg! cleo cinq

– Hide quoted text — Show quoted text – I love chocolate but eat it rarely anymore since it not only makes me feel bad, it gives me diarrhea.  I don’t drink sugared sodas so don’t have first hand experience with that. ~~~~Pat CD Class of 98

Response:

Sugar (or its by-products) are what the "bad bacteria" eat, so the more sugar in your system, the more they can reproduce and give you more symptoms. -Vanessa, who tries to curb her sweet tooth – Hide quoted text — Show quoted text – I’m a fairly big chocolate fan. But if I load up on the sugars then I think it gives me more D. Not sure. Still experimenting. Not really wanting to give up chocolate. And how about pop? It’s got a lot of sugar too. Can too much sugar be just as bad as some other things, such as dairy? (depending on your particular body’s reaction) John

Response:

I’m a fairly big chocolate fan. But if I load up on the sugars then I think it gives me more D. Not sure. Still experimenting. Not really wanting to give up chocolate. And how about pop? It’s got a lot of sugar too. Can too much sugar be just as bad as some other things, such as dairy? (depending on your particular body’s reaction) John

Response:

Chocolate has more caffeine than coffee, tea, or most cola drinks. That may be your problem. Boyd — "The cure for boredom is curiosity. There is no cure for curiosity."

Response:

and carbonation is an irratant for all bowel diseases.  sugar increaases spasms.

– Hide quoted text — Show quoted text – Chocolate has more caffeine than coffee, tea, or most cola drinks. That may be your problem. Boyd — "The cure for boredom is curiosity. There is no cure for curiosity."

Response:

Chocolate and anything with caffeine will cause you problems … I know since i cut most of it out …. my problems lessened I have one cup of very weak tea in the morning and maybe a glass of ice too much …… I drink lots of water and apple juice Love & Peace Maryjo

Response:

My long-term Remicade experience

Question:

Hi Steve, I’ve had 3 series of infusions for fistulizing CD in the last year.  My last fistula was closely followed by an abscess, which had to be surgically drained.   I tend to employ similar remedies to you, gauze, to help cope with draining fistulas. I wish I knew how to make them go away and never come back.   Good luck to you and continued good health! :)  mgbio CD Class of ‘99 – Hide quoted text — Show quoted text – Hi! Part time lurker rare poster here to report my continued good Remicade news.I know that Remicade does not work for all patients but it sure works for me.I would be interested in hearing from others who have benefitted from Remicade. First a little personal history… I am male 43 with Crohns since 1984. Illeanal anastomosis in 1993. For the last few years I’ve had peri-anal fistula and abcess problems. From 3-Feb-99 to 26-Oct-99 I had six Remicade infusions. I had no side effects and very very good results from the Remicade. My Crohns symptoms cleared and my quality of life improved dramaticly. Fast forward to last week, I had another Remicade infusion, my first in 15 months.  Again I had no side effects and I feel so much better now just one week later. No fever, no night sweats, much reduced yellowish pus drainage from fistula, no severe burning pain during BM’s, BM’s more normal, stools formed not loose, BM frequency reduced. Appetite improved. My abcess drained 2 days after the injection providing great relief. No more need for pain meds, still taking 6-MP and Cipro. My problems now are mild constipation with pencil thin stools and still some draining from my fistula and abcess site. I walk around with gauze up between my butt cheeks. But considering where I was a week ago I feel pretty darned good today. BTW while receiving my Remicade injection last week at Beth Israel Deaconess in Boston I got a call from a Remicade researcher that I had given a blood sample to several months ago. He told me that I had no Remicade anti-bodies and I had a 94% chance of benefitting from additional Remicade injections. Anyway I just wanted to pass along my Remicade experience as one data point.I would be interested in hearing from others who have been treated sucessfully with Remicade over the long term. Is anyone out there using Remicade to control their disease? Also I seem to be afflicted with chronic abcesses any help or hints or pointers in dealing with these would be much apreciated. Finally anyone know of any GI docs in Boston that are into Remicade and its possible use for long term treatment of Crohns? Be Well, Steve

Response:

Hi! Part time lurker rare poster here to report my continued good Remicade news.I know that Remicade does not work for all patients but it sure works for me.I would be interested in hearing from others who have benefitted from Remicade. First a little personal history… I am male 43 with Crohns since 1984. Illeanal anastomosis in 1993. For the last few years I’ve had peri-anal fistula and abcess problems. From 3-Feb-99 to 26-Oct-99 I had six Remicade infusions. I had no side effects and very very good results from the Remicade. My Crohns symptoms cleared and my quality of life improved dramaticly. Fast forward to last week, I had another Remicade infusion, my first in 15 months.  Again I had no side effects and I feel so much better now just one week later. No fever, no night sweats, much reduced yellowish pus drainage from fistula, no severe burning pain during BM’s, BM’s more normal, stools formed not loose, BM frequency reduced. Appetite improved. My abcess drained 2 days after the injection providing great relief. No more need for pain meds, still taking 6-MP and Cipro. My problems now are mild constipation with pencil thin stools and still some draining from my fistula and abcess site. I walk around with gauze up between my butt cheeks. But considering where I was a week ago I feel pretty darned good today. BTW while receiving my Remicade injection last week at Beth Israel Deaconess in Boston I got a call from a Remicade researcher that I had given a blood sample to several months ago. He told me that I had no Remicade anti-bodies and I had a 94% chance of benefitting from additional Remicade injections. Anyway I just wanted to pass along my Remicade experience as one data point.I would be interested in hearing from others who have been treated sucessfully with Remicade over the long term. Is anyone out there using Remicade to control their disease? Also I seem to be afflicted with chronic abcesses any help or hints or pointers in dealing with these would be much apreciated. Finally anyone know of any GI docs in Boston that are into Remicade and its possible use for long term treatment of Crohns? Be Well, Steve

Response:

Fibromyalja

Question:

 Kcat; why do you think some Doctors can be come real a**holes; when you start to know more cutting-edge care for yor condition than they do…I have tried to explain paralles (sp?) of my symptoms to the 11 criteras of Lupus and qualifying with 9….I am on day six of my stop  smoking; going cold turkey!! So I am feelng really edgy and depressed; not good. My toe amputatation is coming up this Tuesday the 23rd; unless my Crohns goes off the charts again…I have recently found a lady whom; posts here and on the alt. cd/uc;  that said she has; Lupus which caused her Ulcerative Colitis? The other thing that pisses me off is my GI guy whom I really like was in this denial that Remicade had been in connection with a TB death; Yet my Rheumatologist and I talked openly about it .  I had a TB test November  99" which was negative. For one year now I’ve been their REMICADE/ METHOTREXATE TEST PILOT… with no affects or symtoms of TB. I WILL BE TRULY BUMMED IF THEY PULL THIS DRUG…It makes alot of my Crohns symptoms go away  ; even if it does not last 8-10 weeks…and helps my Atrhritis… Sorry this was supposed to be short….Thanks!! SUSAN     p.s. if only I made a "test-pilots" wage… E@YOU!

Response:

Susan, I couldn’t help but reply to your post as I’ve had problems too with ulcerative colitis-due to the lupus and drugs.  Could you give me the site for the uc group? I’ve not been diagnosed with Crohns, they believe all my GI problems stem from lupus inflammation in the intestines coupled with all the drugs.  I nearly bled to death this November from the small intestines, so now I am on NO treatment-pain control only-"we will keep you comfortable".  I’m curious about your Remicade use, as it was brought up today by my rheumy as a possibility in the future. If you don’t mind me prying, I’d appreciate it if you’d let me know all that goes along with Remicade.  Thanks in advance, hope things get better for you soon.  Cindy

Response:

On Fri, 19 Jan 2001 10:13:30 -0800 (PST), SEATTLESUEat…@webtv.net (SEATTLE SUE ELOFF)  wrote:

Kcat; why do you think some Doctors can be come real a**holes; when you start to know more cutting-edge care for yor condition than they do…

I’m no psychologist but my guess is that at least in part – they spent (or Mommy/Daddy did) several years worth of tuition to become god-like while we are just "average people" with average brains and without the benefit of long classes with monotone professors – therefore we are trampling on their egos by understanding things either they *don’t* understand or they do but don’t want to share with us. That’s one theory. :) I also think that with the way the insurance situation is in the US (and possible elsewhere) they have such high patient loads and so little time to keep up with the latest therefore they project their feelings of failure onto us. I also think they are threatened by the amount of *valid* information that is available on the internet.  They surely hear a lot of the b.s. that is available too – I know before I ever got online i had biases against the concept – like it was spreading lies and snake oil and so on.  And yes, that happens – but it happens without the internet too and in general the ‘net provides not only these wonderful support groups but tons of useful, rational and *correct* information.  some of these same docs are part of web pages for their various institutions…  so I guess only *their* opinions count. All that said, I have heard of doctors that actually applaud the efforts of groups like ours and the web in general for it’s rapid relay of information.  And docs who make use of same.

I have tried to explain paralles (sp?) of my symptoms to the 11 criteras of Lupus and qualifying with 9….I am on day six of my stop  smoking; going cold turkey!!

Congratulations!  I know it’s rough going (I smoked 10 years – quit when I met my hubby).

So I am feelng really edgy and depressed; not good.

no, that’s the tough part.  But you can get past it – keep on keepin on, girl.

My toe amputatation is coming up this Tuesday the 23rd; unless my Crohns goes off the charts again…I have recently found a lady whom; posts here and on the alt. cd/uc;  that said she has; Lupus which caused her Ulcerative Colitis?

I think this is possible – but may be more accurately termed vasculitis of the GI tract.  Probably one and the same though – lesions on the gut, pain, inflammation, misery.

been their REMICADE/ METHOTREXATE TEST PILOT… with no affects or symtoms of TB. I WILL BE TRULY BUMMED IF THEY PULL THIS DRUG…

I haven’t been following this story as I haven’t taken this med.  I hope that since it helps you that you will be able to stay on it.

weeks…and helps my Atrhritis… Sorry this was supposed to be short….

it was (shor that is) – look up any of my posts in the last few months – no one here can ramble as long and unintelligibly as I can! :)

Thanks!! SUSAN     p.s. if only I made a "test-pilots" wage…

amen! *********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

Response:

Hi Bruce, my grandmother had TB when my mother was a child.  She and her brother always tested positive but never got it until my mom was 80 years old.  She was treated and cured of the TB, but passed away last year at 85.  Is this a Michigan thing?

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I think it’s pretty common for people living before 1940 to have been exposed to TB, but not had an active case until their immune system became incapable of maintaining the TB germs inactive. Bruce, Michigan

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I’m not freaking out about it at all, I was just asking why my Dr would order such a test! He ordered it over a week ago and I havent gone because I thought it was kind of ridiculous to be tested for something like that since this time, my lungs feel fine.

Response:

For what it’s worth, I was on prednisone for a year.  Tested positive for TB in 1945 (inactive).  I was put on isoniazid for six months to combat the TB, prevent it from becoming active. As we age, our immune system is less capable of holding down the TB germs by encapsulating them.  I was told my chances of developing active TB due to aging along were about 10%.  Whether the isoniazid killed all the encapsulated germs is something I don’t know — Bruce, Michigan "Wishes come true, not free" (Stephen Sondheim)

Response:

<<  I was generalizing regarding only those docs who do not give their patients any credit for having brains of their own.  

I knew that.  I’m so glad though that we’re able to have an open dialogue about this.  I actually think you present a very fair, balanced point of view on the subject.   Of course, I can’t claim myself to be completely without bias.  That’s hard to do when you’re married to a doctor.  I have been very involved in the medical world though from both sides of the fence, so I do very much have sympathy with what you were saying.   <<  I have recently seen a post-er on hamline who was told some of the most *wrong* things about lupus I’d ever heard.

I think I read that post as well.  I also found it very shocking.  Thank goodness there are other sources of information available.  It’s a good example though of why you should never simply take your doctor’s word for anything. They may be right most of the time, but being human they’re also bound to make mistakes…one hopes not too many and never serious ones.  Still, it’s always safest to ask lots of questions, and be an informed active participant in your own health care.   Sandra

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I am replying to a posting from Susan – you mentiomed something about a TB death as a possible result of taking remicade.  I have been sooooo sick lately- I have been  in/out of the hosital since the week before christmas. during all this , at one point there were hundreds of blood tests ordered and even a TB test. I didnt understand why he ordered it and forgot to ask him why until now when i read your posting. Has a connection been found between some of the arthritis medications and TB? At the risk of sounding like an idiot, what are the symptoms of TB and is there any other significant use of looking at the results of a TB tests other than to dx TB? I havent had the TB test done yet. Thanks Karen

Response:

snip

I have to say that in my experience if

they were caring individuals before medical school, they are generally still as caring after.  If they tended to be jerks before medical school, likewise that didn’t change much either.  < Sandra, you are right on target.  Same thing with with a chronic illness.  If one is a jerk (or insert your descriptor) before diagnosis, one can surely continue to be a jerk after diagnosis.  Although I have a nursing friend who said she did not have the proper ego to become a doctor! to our health kelly

Response:

SWISS MISS  / aka: Karen, not trying to freak you out… but yes there has been one reported death in London you can see a feed thru REUTER’S NEWS( Jan 8th 2001 or go to alt.support Crohns-Colitis there you will see Remicade linked to TB… Karen you are truly freaking out for nothing… If YOU had TB which I truly; doubt you would already be dead. It is a very severe bronchial disease; in which your lung tissue gets scarred and between that pnuemonia, fluids fillng up in the lungs , high;high fevers/sweat and then you die… in part why it spread so bad in Europe is there saniitation system ; even though it is 2001 …these folks are stilli quite a bit behind the times… WE CAN AVOID THINGS WHICH WE KNOW ARE TRULY BAD FOR US; BUT WHAT ARE YOU GOING TO START TO DO LIVE IN A PLASTIC BUBBLE… THE PLASTIC BUBBLE WOULD BE HARMFUL TO US…In YES! the "plastic would be harmful; because both vinyl and plastic creates an "offing-gas" which creates carciogens from what is know as thallows… That which is formed from vinyl and plastic when sunlight heats it… Don’t sweat te small stuff; "live life"… Take Care! Susan                                  E@YOU!                P.S. I might also add that most of those with TB HAD IT WITHIN THERE 1ST OR 2ND DOSING

Response:

<<my guess is that at least in part – they spent (or Mommy/Daddy did) several years worth of tuition to become god-like while we are just "average people" with average brains and without the benefit of long classes with monotone professors – therefore we are trampling on their egos by understanding things either they *don’t* understand or they do but don’t want to share with us.

I can’t speak for everyone, but most physicians I know, including my husband, put themselves through college and medical school.  Granted some do have big egos.  There are also those who don’t spend enough time listening to their patients.  I’ve certainly met a few like this.  I’ve also met a lot of very caring physicians who took what I had to say very seriously.   Knowing many physicans from before they entered medical school till now with more than 10 years in private practice, I have to say that in my experience if they were caring individuals before medical school, they are generally still as caring after.  If they tended to be jerks before medical school, likewise that didn’t change much either.   I think physicians are people like anyone else, and their personalities as varied as those in any other profession.  There are few professions though from whom so much is expected and where a single mistake can lead to total bankruptcy, humiliation and a million other problems.   I’m not trying to excuse rude or unprofessional behavior, of course. Just injecting another viewpoint. Sandra

Response:

On 20 Jan 2001 05:22:21 GMT, scroyle…@aol.com (SCroyle909)  wrote:

I can’t speak for everyone, but most physicians I know, including my husband, put themselves through college and medical school.  

Both of my former bosses came from very well-to-do families who supplied their funding.  However, they were very caring doctors.  One gave up her practice for research because of the horrible cost of malpractice insurance – leaving her husband to practice and do research.   I was generalizing regarding only those docs who do not give their patients any credit for having brains of their own.  and I’m sure part of the defensiveness those same docs have could also extend from having put themselves through all those years of training and feeling like "we" (the ignorant patient) are stepping on their educated toes. I have been fortunate in that I’ve found very good docs who *will* spend much time with their patients (of course, this makes waiting rooms crowded and grumpy but for the calibre of doctor one gets out of the wait – it is usually well worth it.).

Knowing many physicans from before they entered medical school till now with more than 10 years in private practice, I have to say that in my experience if they were caring individuals before medical school, they are generally still as caring after.  If they tended to be jerks before medical school, likewise that didn’t change much either.  

<nodding

I’ve watched that process myself – though I was surprised by

a former coworker who really was a jerk outwardly – constantly interrupting conversations with my boss as if he were more important because he was a "medical student", etc.  But when he started residency his entire tone had changed.  He was the one that encouraged me to continue fighting for proper rheumatological care.. young and idealistic?  I don’t think so.  I think his new marriage, the work with patients and realizing how much better a doctor he could be by caring just clicked into gear for him.  But he’s probably the exception that proves the rule.  My former boss treated little ones – and though she wasn’t so great with adults – she could charm little kids into relaxing examinations.

I think physicians are people like anyone else, and their personalities as varied as those in any other profession.  There are few professions though from whom so much is expected and where a single mistake can lead to total bankruptcy, humiliation and a million other problems.  

Absolutely.  I have often thought I would love to be a doctor, I basically like people and medicine is fascinating to me.  The major thing that holds me back is that I know I could make an error in diagnosis, treatment, etc. and at the least make someone’s life difficult.  I couldn’t hold myself to that standard without losing my mind to be honest.

I’m not trying to excuse rude or unprofessional behavior, of course. Just injecting another viewpoint.

And I think it’s important that we do so.  We get so frustrated with the doctors that *don’t* care or that are too busy to keep up with the latest data or are sick of fighting HMOs etc. that we forget about the really good docs out there that have tried to help us.  I know I do. I’m reminded of them when my daugther sees her GP – he’s wonderful. And my new urologist (or at least her nurse practitioner) is very patient and caring. When I sat blubbering in the exam room on Tuesday she just said "that’s okay – this is your time…" and let me get myself under control. I could never have done that with the male uro. I was seeing – he is an excellent doctor but distant and abrupt – leading me to clam up instead of voicing just how miserable I am. okay – enough rambling.  I hope everyone reads your input on this Sandra because we do need to be reminded that these folks are not gods – some may think they are, and some of us may resent them as thinking they are.  I have recently seen a post-er on hamline who was told some of the most *wrong* things about lupus I’d ever heard.  This is a rheumy so all I can figure is that he is not keeping up with the times.  I guess when I wrote the above post I was still seething over that.  Told her that without skin involvement she couldn’t possibly have lupus.  Told her that she didn’t need eye checkups while on plaquenil and that this was just the opthalmologists way of making money off of her.  When she asked if a new med would have side effects he told her he wouldn’t give  her a medication if it had side effects! So that had me set on edge already and prepared to pounce.  :) thank you for a more evenhanded opinion. take care, *********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

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I found *solid* sleep invaluable to coping with FM pain as well as the fatigue of lupus and FMS.  I was on trazadone for a year or so but it made my b.p. so low that I began having multiple fainting spells per day.  Now I just have them now and then and take Ambien for sleep. most docs say "that is for short term use only" but I’ve been on ambien for 3 years with no ill effects and continued success.  I am *dependent* on it – without it I do not sleep.  But I rarely need to nap anymore and for a couple of years I had to have at least a 2hr nap per day even with normal sleep patterns (and while on Trazadone). there are several ways both natural and medical to help you get sufficient sleep and I do think it is very important in combating this problem. On Wed, 10 Jan 2001 11:37:25 -0500 (EST), Janes…@webtv.net (Jane Daily)  wrote:

I have had lupus now for about ten years, but in the last year I have been dealing with *Fibromyalja* this puppy is not fun, I hurt all other especially my hands and back and hips !I want to get better,,,,,,,,,can someone help me?  My Doctor has put me on *paxil* 20 mg. a day ,to help with the stress in my llfe. I just started that today.  I was talking 30 mg this summer. I just stop taking it the last of December.  I got alot more pain after I went off it………..I thought it was my mattress that was giving me back pain…….lol  I want to feel better ……..can anyone out there give me some ideas????  If I take something to help me sleep good, will that help alittle ?  The dr, said I’m sleeping *but* not a good sleep……….ok The Janester

*********************************** KCat – I am not a medical professional.  The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm   ("`-”-/").___..–”"`-._   (`6_ 6  )   `-.  (     ).`-.__.’`)    (_Y_.)’  ._   )  `._ `. “-..-”   _..`–’_..-_/  /–’_.’ ,’ (()),-”  (()),’    (((.-’

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hi! Are you taking vioxx or celebrex? Those are 2 meds that are prescribed for the joint pain associated with FMS, SLE, RA, etc. I take vioxx -when I am not in such a horrible flare from the SLE and RSD as i have been, it does seem to help. Are you taking any kind of muscle relaxer? I think everyone on here takes something different- I have tried flexeril, baclofen and zanaflex-I am taking zanaflex now and it does help to take the edge off.. Are you taking anything to help you sleep? The firt thing I try is benadryl, if that doesnt seem to be doing the job, I take Ambien. I have been taking Ambien for almost a year now and it seems to be losing its effectiveness fr me- but of course everyone is different. There are a lot of sleep aids out there. Another bit of advice- try to stay warm- this time of the year is the worst! Take a hot bath before you go to bed- relax!!!!! ( I am not an expert n relaxation though-i have 3 kids,-2 of which are unruly adolescents, 2 naughty dogs, and have 65 men working for me-so needess to say, I dont do much relaxing!) I hope you find something that works for you! Karen

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If I take something to help me sleep good, will that help alittle ?

I have found that sleeping well has the biggest impact in decreasing the fibrommlgia part of my pain. I have tried a variety of things, some that worked better than others. Soma worked well for awhile but slowly becme less effective. Currently I am using klonopin. I sleep great but since it is so long acting, I have to be sure to take it at least 8-9 hourse before I need to get up or I am too groggy the next morning. It may take trying several things to see what works best for you.

Response:

I have had lupus now for about ten years, but in the last year I have been dealing with *Fibromyalja* this puppy is not fun, I hurt all other especially my hands and back and hips !I want to get better,,,,,,,,,can someone help me?  My Doctor has put me on *paxil* 20 mg. a day ,to help with the stress in my llfe. I just started that today.  I was talking 30 mg this summer. I just stop taking it the last of December.  I got alot more pain after I went off it………..I thought it was my mattress that was giving me back pain…….lol  I want to feel better ……..can anyone out there give me some ideas????  If I take something to help me sleep good, will that help alittle ?  The dr, said I’m sleeping *but* not a good sleep……….ok  The Janester

Response:

Hi Jane, Yes, have your doctor prescribe something to help you get into REM sleep. The lack of good, sound sleep for at least 6 hours a night contributes greatly to your pain.  I’m on 50 mg. Elavil and 150 mg Trazodone at night. I sleep like a rock!  As far as the Fibro pain, I’m not on any pain meds right now.  For my back and hip pains I use Soma (muscle relaxant) and Extra Strength Tylenol and I am very fortunate to have a hot tub where I can soak the aches away when needed.  I am on Daypro (anti-inflammatory) for my hands and other joints. You might also see if your doctor will send you to a physical therapist for heat massage therapy.  It’s done wonders for me…. — Fran    <__~               /   Handmaiden to HRH Lemonade Grandmother to Ducky, Future Horsewoman Extraordinaire "Jane Daily" <Janes…@webtv.net

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news:28900-3A5C8FC5-27@storefull-262.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -

I have had lupus now for about ten years, but in the last year I have been dealing with *Fibromyalja* this puppy is not fun, I hurt all other especially my hands and back and hips !I want to get better,,,,,,,,,can someone help me?  My Doctor has put me on *paxil* 20 mg. a day ,to help with the stress in my llfe. I just started that today.  I was talking 30 mg this summer. I just stop taking it the last of December.  I got alot more pain after I went off it………..I thought it was my mattress that was giving me back pain…….lol  I want to feel better ……..can anyone out there give me some ideas????  If I take something to help me sleep good, will that help alittle ?  The dr, said I’m sleeping *but* not a good sleep……….ok  The Janester

Response:

Crohns fatigue

Question:

Margie, I should have made it clearer about taking aspirin for fatigue.  It was prescribed for a heart murmur due to a faulty valve.  So I assume thinning the blood is a little easier on the heart when it comes to digestion.   After I wrote the post, I realized the reason for the aspirin and I don’t think it would be for everybody.  It should be taken only on the advice of a doctor.  I think my fatigue is caused for this reason. (plus the crohns for which the main attack is on the heart for me.) My error. Gail

Response:

Bonnie, No, I never had Rheumatic fever.  I hate to tell you at what age the doctor first told me of a heart murmur.  And for some reason he knew he was the first to tell me.  It could simply be due to age, or some years before, I remember having a very bad sore throat but took antibiotics almost immediately.  Never followed up on the throat culture.  So I never knew  if it was a (can’t think of the word for the sore throat that can cause Rheumatic fever) Gail

Response:

Yes, I had strep throat, and I didn’t have any heart problems either. I had it when President Eisenhower had his heart attack and I wrote him a letter telling him that I had Romantic Fever.  LOL My mom told me how I spelled it when I got older. She sent the letter as I wrote it.  :-) love, Bonnie

– Hide quoted text — Show quoted text – I forgot to say,  Bonnie, not all Rheumatic Fever causes heart problems. My niece had Rheumatic fever also, but seems to be well in the heart department. Strep throat is what I couldn’t think of. Gail

Response:

The doctor told me to take 1/2 Ecotrin a day.  I take l Bayers everyday, with a little milk, which seem to lessen the fatigue slightly.

I hate to ask this but…how can aspirin help with fatigue?     Margie

Response:

Sue, they don’t get more oxygen into one, but rather they purify the air, make it fresher, take out the staleness & kill bad bacteria. It’s then theoretically easier to breathe because one wants to breathe fresh air. Prehaps subconsciously one holds one’s breath or takes in less air when the air is stale, sort of how you hold your breath when entering a smelly loo. Also, aftre a thunderous rainstorm, some people like to go outside to "smell the fresh air". So, there seems to be some undefined link. Bryan

Response:

Gail, Did you have Rheumatic Fever when you were younger?  I did the summer between my 5th and 6th year of school.  I was wondering if that is where the heart murmur is from.  Seems I recall that some posters here have had it. love, Bonnie

– Hide quoted text — Show quoted text – Margie, I should have made it clearer about taking aspirin for fatigue.  It was prescribed for a heart murmur due to a faulty valve.  So I assume thinning the blood is a little easier on the heart when it comes to digestion.   After I wrote the post, I realized the reason for the aspirin and I don’t think it would be for everybody.  It should be taken only on the advice of a doctor.  I think my fatigue is caused for this reason. (plus the crohns for which the main attack is on the heart for me.) My error. Gail

Response:

Gail, one of the reasons I don’t like to eat breakfast is because I am ready to go back to bed after I am finished eating no matter how small or large the breakfast.  If I want to get anything done, I have to do it and then eat around 2pm or so.  I just run around and forget to eat sometimes. love, Bonnie

Response:

Hi Bryan, How exactly do the negative-ion generators get more oxygen into you? – Hide quoted text — Show quoted text -Unfortunately, if you’re on prednisone, that also causes tiredness (chronic fatigue) due to its adrenal drain effect. I’ve heard SPECULATION that getting additional oxygen into the body’s cells may really help with the fatigue. Perhaps you can research, or someone here (like Ken) can provide meaningful input, into one or more of the following therapies and their possibly beneficial effects on CD/UC-induced Chronic Fatigue: 1) HYPERBARIC OXYGEN treatment; 2) MAGNESIUM PEROXIDE tablets; 3) DEEP & CORRECT BREATHING exercises; 4) MEDITATION / YOGA; 5) NEGATIVE-ION GENERATORS, which make the room fresh like just after a thunderous shower! Bryan

Response:

I don’t know yet if I have Crohn’s, but I have been tired for soooo long. I didn’t tell the doc because I didn’t think it was related – I know I’m not anaemic. susan And I don’t know of any suggestions for you – Hide quoted text — Show quoted text -except to be sure you’re not anemic.  If you are, see my post re anemia. Marianne

Response:

Did it make the room "fresher", like after a good thunder & shower? Bryan

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i agree with the fact that fatigue is one of the hardest parts of this illness.  i have tried taking an echinacea supplement for about a week at a time, 4 capsules a day to try to boost my immune system.  i thought that this may help witht the fatigue.  i didn’t have any noticable improvement, and it is suggested that you not take echinacea for more that two weeks consecutively.   -a

Response:

As for everyone … symptoms and treatments differ… when i took ensure to help me  get thru long periods of class without food… i shortly developed polyps.. i am not sure that the ensure was responsible but i am not willing to try it again.. i am also highly allergic to milk and seem to react to most synthetic food stuffs. just a thot.. tiffany – Hide quoted text — Show quoted text – Hi Vic     Something that works for me is drinking Boost or Boost Plus in the morning. I finally got back to my weight range a couple of weeks ago and slcked on drinking boost. I noticed a decrease in energy on the days I didn’t drink it in the morning. I have started drinking Boost Plus again in the morning and this seems to hepl me out. Cheers….. Chad My major crohns symptoms include incredible fatigue — tired eye lids, tired fingers, sore thigh muscles… not many digestive symptoms, ie diarhea, urgency, etc… Am I alone?  Anyone else have these kinda symptoms?  Please let me know!!! Vic

Response:

Hi Vic     Something that works for me is drinking Boost or Boost Plus in the morning. I finally got back to my weight range a couple of weeks ago and slcked on drinking boost. I noticed a decrease in energy on the days I didn’t drink it in the morning. I have started drinking Boost Plus again in the morning and this seems to hepl me out. Cheers….. Chad – Hide quoted text — Show quoted text – My major crohns symptoms include incredible fatigue — tired eye lids, tired fingers, sore thigh muscles… not many digestive symptoms, ie diarhea, urgency, etc… Am I alone?  Anyone else have these kinda symptoms?  Please let me know!!! Vic

Response:

You are not alone…. I am the same way….had cd since 86 and now have thyroid problems also…. you might have that checked….that will sure make you have no energy, tired, and sore muscles also. Good luck, VJ —

– Hide quoted text — Show quoted text – My major crohns symptoms include incredible fatigue — tired eye lids, tired fingers, sore thigh muscles… not many digestive symptoms, ie diarhea, urgency, etc… Am I alone?  Anyone else have these kinda symptoms?  Please let me know!!! Vic

Response:

Nope – you are not alone! I have gotten the diarrhea under control (thank you God for Questran) and now my biggest complaint (besides my family not picking up after themselves) is fatigue and joint pain. If I could have finger replacements I would do it! Rebecca :-) – Hide quoted text — Show quoted text – My major crohns symptoms include incredible fatigue — tired eye lids, tired fingers, sore thigh muscles… not many digestive symptoms, ie diarhea, urgency, etc… Am I alone?  Anyone else have these kinda symptoms?  Please let me know!!! Vic

Response:

That is very interesting Gail because I always have trouble in the morning right after I take a shower. I have some energy when I wake up and by the time I am finished with my breakfast and shower I am exhausted. Perhaps it is the fact that I eat before my shower and not the act of showering that is making me tired. I will test this theory. . . Rebecca :-) – Hide quoted text — Show quoted text – On fatigue, is it posible it happens after eating and the digestive system cannot handle the process. I notice I can go a whole day without fatigue if I don’t eat, but the moment I have even a light meal, I cannot move with a tiredness that I think if I lay down, I will never get up. The doctor told me to take 1/2 Ecotrin a day.  I take l Bayers everyday, with a little milk, which seem to lessen the fatigue slightly. Sincerely Gail

Response:

Unfortunately, if you’re on prednisone, that also causes tiredness (chronic fatigue) due to its adrenal drain effect. I’ve heard SPECULATION that getting additional oxygen into the body’s cells may really help with the fatigue. Perhaps you can research, or someone here (like Ken) can provide meaningful input, into one or more of the following therapies and their possibly beneficial effects on CD/UC-induced Chronic Fatigue: 1) HYPERBARIC OXYGEN treatment; 2) MAGNESIUM PEROXIDE tablets; 3) DEEP & CORRECT BREATHING exercises; 4) MEDITATION / YOGA; 5) NEGATIVE-ION GENERATORS, which make the room fresh like just after a thunderous shower! Bryan

Response:

5) NEGATIVE-ION GENERATORS, which make the room fresh like just after a thunderous shower!

If anyone is interested I have one for sale.  Bought it for allergies, didn’t help us at all. Eileen

Response:

Bryan: I am no expert, but I have been taking a meditation/Tai Chi class for about 6 months. I think that both TaiChi and meditation have helped me to relax and re-focus my energy in a positive way. Why does it work? Who knows except that both have been  around for a LONG time and so there must be some merit to them. We all know stress makes us worse and the meditation and TaiChi have really helped my stress level. Hope you are both doing better today. Care givers need support too! Rebecca :-) – Hide quoted text — Show quoted text – Unfortunately, if you’re on prednisone, that also causes tiredness (chronic fatigue) due to its adrenal drain effect. I’ve heard SPECULATION that getting additional oxygen into the body’s cells may really help with the fatigue. Perhaps you can research, or someone here (like Ken) can provide meaningful input, into one or more of the following therapies and their possibly beneficial effects on CD/UC-induced Chronic Fatigue: 1) HYPERBARIC OXYGEN treatment; 2) MAGNESIUM PEROXIDE tablets; 3) DEEP & CORRECT BREATHING exercises; 4) MEDITATION / YOGA; 5) NEGATIVE-ION GENERATORS, which make the room fresh like just after a thunderous shower! Bryan

Response:

Sometimes I am so tired that I do not think I could walk from one side of the room to the other.  Rest helps a tiny bit but not as much as I would like. Your symptoms sound like they came right out of the book of symptoms of IBD. You have lots of company who are in the same boat.  Send the group an email whenever you need some help. Good luck.

Response:

My major crohns symptoms include incredible fatigue — tired eye lids, tired fingers, sore thigh muscles… not many digestive symptoms, ie diarhea, urgency, etc… Am I alone?  Anyone else have these kinda symptoms?  Please let me know!!! Vic

Dear Vic — No, you’re certainly not alone.  I’ve had CD for 15 years now…it has been active the majority of the time, I’ve had two bowel resections, etc. .. but my biggest complaint and the hardest part of the disease for me to cope with has always been the fatigue…  And I don’t know of any suggestions for you except to be sure you’re not anemic.  If you are, see my post re anemia. Marianne

Response:

On fatigue, is it posible it happens after eating and the digestive system cannot handle the process. I notice I can go a whole day without fatigue if I don’t eat, but the moment I have even a light meal, I cannot move with a tiredness that I think if I lay down, I will never get up. The doctor told me to take 1/2 Ecotrin a day.  I take l Bayers everyday, with a little milk, which seem to lessen the fatigue slightly. Sincerely Gail

Response:

Not me; I wake up tired and stay that way.  Unfortunately!

| On fatigue, is it posible it happens after eating and the digestive system | cannot handle the process. | I notice I can go a whole day without fatigue if I don’t eat, but the moment I | have even a light meal, I cannot move with a tiredness that I think if I lay | down, I will never get up. | The doctor told me to take 1/2 Ecotrin a day.  I take l Bayers everyday, with a | little milk, which seem to lessen the fatigue slightly. | | Sincerely Gail

Response:

My major crohns symptoms include incredible fatigue — tired eye lids, tired fingers, sore thigh muscles… not many digestive symptoms, ie diarhea, urgency, etc… Am I alone?  Anyone else have these kinda symptoms?  Please let me know!!! Vic

Response:

| My major crohns symptoms include incredible fatigue — tired eye lids, tired | fingers, sore thigh muscles… not many digestive symptoms, ie diarhea, | urgency, etc… | | Am I alone?  Anyone else have these kinda symptoms?  Please let me know!!! | | Vic All of the above!  Join the club; it’s not exclusive at all!  Not much fun but what can ya do???

Response:

Max Imuran dose?

Question:

Hi All, I’m on Imuran 100 mg  a day and from what I remember the maximum dosage depended on your body weight,  the normal dose for preventing organ rejection is 5 mg/kg of body weight/day, but for other conditions it is 2-2.5 mg/kg of body weight/day, so it will depend on your body weight as to how much you will be taking. Hoped this has helped William.

– Hide quoted text — Show quoted text -What is the maximum dosage for Imuran?  I’m on 150mg/day right now, and to make sure I can STAY off the prednisone (I’ll be tapering from 5mg/day soon) I wonder if going to 200mg would be a problem?  (Of course, I’ll be discussing this with my GI as well)  So what have the highest doses been here? — Brian Drain http://members.aol.com/preyemuhs – Currently down — ASW Home: http://www.webdesigns1.com/asw

Response:

For the metric impaired that would be .91 to 1.14 mg/lb or roughly 1 mg/lb

Thank you, thank you, thank you.  I am metrically impaired!  You answered my question!  Thanks again! Margie  :-) <~~who felt too stupid to ask!

Response:

Hi All, I’m on Imuran 100 mg  a day and from what I remember the maximum dosage depended on your body weight,  the normal dose for preventing organ rejection is 5 mg/kg of body weight/day, but for other conditions it is 2-2.5 mg/kg of body weight/day, so it will depend on your body weight as to how much you will be taking. Hoped this has helped

For the metric impaired that would be .91 to 1.14 mg/lb or roughly 1 mg/lb

Response:

Thanks Sam, Good luck at the Physiotherapist. I did do a course of Entocort (which is the same thing as Budesonide), but it didn’t seem to do anything whatsoever.  On the bright side, it didn’t have any side effects that I noticed, one of the few meds that I haven’t had some type of side effect from. Yeah, the abcesses, four of them altogether, I believe (the last one was the size of a tennis ball….ICK!) have been, er…very interesting.  Until they appeared, my Crohn’s symptoms were limited to big pain, cramping, constant D and the occassional blockage.  When I first got the first abcess, I didn’t think that it was at all related to my Crohn’s, ’cause it sure didn’t feel the same.  It is bizarre, the various forms that this disease can take. As for the methotrexate, I am totally thankful that I haven’t lost any hair, as that is purported to be one of the side effects, my hair is down to my waist, and although, I am not a particularly vain person, it would hurt me greatly to lose it. *HUGS* Ann – Hide quoted text — Show quoted text – I think that ‘accident’ isn’t really appropriate for the carnage that happened here – I’ll send you some photos… I’m off to see the physio again at 11:30 – she’s a little concerned about the state of my neck currently… Have you tried any of the other anti-inflammatories (like entocort or budesonide)? Sounds like that abcess has given you worlds of entertainment, I sincerely hope that you get your methotrexate sorted out and it works, but even surgery would be preferable to pain. I’m in a similar situation – if the methotrexate hadn’t been effective then I’d be looking at a short hospital holiday. Good luck… Sam : Sam, : At least the headaches aren’t from the meds!  You need to be careful about : those car accidents though.  *HUGS* : I haven’t been on Pred for about two years, but I was on 6-MP in the mean : time.  I was able to get off of the Pred when I had my abcess in my : abdominal wall drained.  It turned out that the Pred was actually making the : abcess worse, and it was masking it the whole time.  The Pred helped my : Crohn’s symptoms, but the masking effect was too dangerous with the abcess : thing. : I have been in a constant flare for almost the last three years, and unless : they start to allow remicade in Canada, the methotrexate is my last hope, : before surgery.  Right now the surgery is looking good.  (I would have to : have the portion of my transcending colon, that has the fistula that goes to : the abcess, removed, and then resected) : *HUGS* : Ann : I was stuck on 15mg/day prednisolone before I started methotrexate – tried : a : few times to get below this but straight back into a flare when I did. : With methotrexate I am now nearly a month pred free and still in : remission – : indeed, this is the healthiest (as far as Crohns symptoms are concerned) : I’ve : been for over 2 years. : : Bloody headaches are annoying me at the moment, but then, I know what’s : causing that and I’ve probably got to claim responsibility for them, so I : can’t really complain.  What do you expect when you nearly kill yourself : in a car crash and completely stuff up your neck? : : Sam : : : : Thanks Sam,  I will question my Doc about this.  I know that I feel half : : dead most of the time, but I certainly don’t want this drug to kill me! : : : Just one question though, has the methotrexate reduced your Crohn’s : : symptoms?  In what way? : : : *HUGS* : : : Ann : : : : Ah, I’m sorry, but months between tests when you’re on methotrexate : : strikes : : me as a little dangerous.  I was having weekly tests for about 5 : months, : : onto : : fortnightly tests now (one on Friday) and it’s not likely that that : will : : change in the immediate future.  Methotrexate can have very serious : : effects : : (like sudden death) so it really needs to be monitored.  I think I : read : : somewhere that even when you’re stable on it you still need at least : : monthly : : tests done. : : : : Good luck, hope you can get this sorted out… : : : : Sam : : : : : : : Yeah, we have talked about it, but he is hoping that it will start : to : : help : : : me. My blood tests haven’t been too regular to be honest.  I had one : : about a : : : month and a half ago, and I will have another on Sept 13. : : : : : *HUGS* : : : : : Ann : : : : message : : : Are you having regular blood tests?  I get the tiredness, no : nausea : : : (although : : : this is listed as a knon side effect I think) and I’m usually okay : : within : : : 36-48 hours.  Sounds like it might be having a little bit more of : an : : : effect : : : on you than it should… : : : Have you discussed the effects with your doctor? : : : : : : Sam : : : : : : : : : : Sam, : : : : : : : I am also on 15mg/week.  It makes me really tired for the first : few : : days : : : as : : : : well.  I take it on Monday night, I take it with gravol, because : it : : : : nauseates me, and I basically go right to bed.  After I take it, : I : : : usually : : : : sleep for at least 14 hours, and then I have a low grade fever : for : : the : : : next : : : : five or six days.  I have also been catching everything that is : : going : : : : around.  I have been on it for three months, and I am still : going : : : : approximately 20 times a day.  Is it just not working for me? : : : : : : : *HUGS* : : : : : : : Ann : : : : : : : message : : : : Ann, : : : : : : : : How much methotrexate are you taking? I’m on 15mg/week at the : : moment, : : : and : : : : I don’t think my immune system has suffered greatly, but I’m : : : definitely in : : : : a ‘bowel-happy’ state at this time. : : : : : : : : Sam : : : : : : : : : : : : : Sam, : : : : : : : : : I am curious too, 6-MP which is similar to Imuran gave me : : : debilitating : : : : : migraines, so now I am on Methotrexate, and have a fever for : : five or : : : six : : : : : days a week, and have caught two colds, and had a bladder : : infection, : : : in : : : : the : : : : : last couple of months.  I don’t like any immunosuppressant : : drugs, : : : and I : : : : am : : : : : really frustrated. : : : : : : : : : *HUGS* : : : : : : : : : Ann : : : : : : : : : : : : : Sam – why would you rather have Imuran than Methotrexate? : I : : got : : : : violently : : : : : ill on Imuran too – and the next drug the doc wants to try : is : : : Meth. : : : : : : : : : : Any advice/suggestions/stories appreciated. : : : : : : : : : : Rebecca :-) : : : : : wrote in : : article : : : : : From what I understand, they will increase your dose : until : : (a) : : : : you’re in : : : : : "remission" or (b) your immune system is slightly : depressed. : : : Since : : : : the : : : : : drug can take months to have any effect then this can be : a : : long : : : : process. : : : : : For the record, I was on 100mg, was to increase dosage : but : : had a : : : : couple : : : : : of : : : : : nasty reactions – vomiting and liver problems, so I had : to : : stop : : : : taking : : : : : it. : : : : : I’d rather have Imuran than methotrexate any day. : : : : : : : : : : Sam : : : : : : : : : : : : : : : : What is the maximum dosage for Imuran?  I’m on : 150mg/day : : right : : : : now, : : : : : and : : : : : to make : : : : : : sure I can STAY off the prednisone (I’ll be tapering : from : : : 5mg/day : : : : : soon) : : : : : I : : : : : : wonder if going to 200mg would be a problem?  (Of : course, : : I’ll : : : be : : : : : discussing : : : : : : this with my GI as well)  So what have the

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Response:

I think that ‘accident’ isn’t really appropriate for the carnage that happened here – I’ll send you some photos… I’m off to see the physio again at 11:30 – she’s a little concerned about the state of my neck currently… Have you tried any of the other anti-inflammatories (like entocort or budesonide)? Sounds like that abcess has given you worlds of entertainment, I sincerely hope that you get your methotrexate sorted out and it works, but even surgery would be preferable to pain. I’m in a similar situation – if the methotrexate hadn’t been effective then I’d be looking at a short hospital holiday. Good luck… Sam

: Sam, : At least the headaches aren’t from the meds!  You need to be careful about : those car accidents though.  *HUGS* : I haven’t been on Pred for about two years, but I was on 6-MP in the mean : time.  I was able to get off of the Pred when I had my abcess in my : abdominal wall drained.  It turned out that the Pred was actually making the : abcess worse, and it was masking it the whole time.  The Pred helped my : Crohn’s symptoms, but the masking effect was too dangerous with the abcess : thing. : I have been in a constant flare for almost the last three years, and unless : they start to allow remicade in Canada, the methotrexate is my last hope, : before surgery.  Right now the surgery is looking good.  (I would have to : have the portion of my transcending colon, that has the fistula that goes to : the abcess, removed, and then resected) : *HUGS* : Ann : I was stuck on 15mg/day prednisolone before I started methotrexate – tried : a : few times to get below this but straight back into a flare when I did. : With methotrexate I am now nearly a month pred free and still in : remission – : indeed, this is the healthiest (as far as Crohns symptoms are concerned) : I’ve : been for over 2 years. : : Bloody headaches are annoying me at the moment, but then, I know what’s : causing that and I’ve probably got to claim responsibility for them, so I : can’t really complain.  What do you expect when you nearly kill yourself : in a car crash and completely stuff up your neck? : : Sam : : : : Thanks Sam,  I will question my Doc about this.  I know that I feel half : : dead most of the time, but I certainly don’t want this drug to kill me! : : : Just one question though, has the methotrexate reduced your Crohn’s : : symptoms?  In what way? : : : *HUGS* : : : Ann : : : : Ah, I’m sorry, but months between tests when you’re on methotrexate : : strikes : : me as a little dangerous.  I was having weekly tests for about 5 : months, : : onto : : fortnightly tests now (one on Friday) and it’s not likely that that : will : : change in the immediate future.  Methotrexate can have very serious : : effects : : (like sudden death) so it really needs to be monitored.  I think I : read : : somewhere that even when you’re stable on it you still need at least : : monthly : : tests done. : : : : Good luck, hope you can get this sorted out… : : : : Sam : : : : : : : Yeah, we have talked about it, but he is hoping that it will start : to : : help : : : me. My blood tests haven’t been too regular to be honest.  I had one : : about a : : : month and a half ago, and I will have another on Sept 13. : : : : : *HUGS* : : : : : Ann : : : : : : : Are you having regular blood tests?  I get the tiredness, no : nausea : : : (although : : : this is listed as a knon side effect I think) and I’m usually okay : : within : : : 36-48 hours.  Sounds like it might be having a little bit more of : an : : : effect : : : on you than it should… : : : Have you discussed the effects with your doctor? : : : : : : Sam : : : : : : : : : : Sam, : : : : : : : I am also on 15mg/week.  It makes me really tired for the first : few : : days : : : as : : : : well.  I take it on Monday night, I take it with gravol, because : it : : : : nauseates me, and I basically go right to bed.  After I take it, : I : : : usually : : : : sleep for at least 14 hours, and then I have a low grade fever : for : : the : : : next : : : : five or six days.  I have also been catching everything that is : : going : : : : around.  I have been on it for three months, and I am still : going : : : : approximately 20 times a day.  Is it just not working for me? : : : : : : : *HUGS* : : : : : : : Ann : : : : : : : message : : : : Ann, : : : : : : : : How much methotrexate are you taking? I’m on 15mg/week at the : : moment, : : : and : : : : I don’t think my immune system has suffered greatly, but I’m : : : definitely in : : : : a ‘bowel-happy’ state at this time. : : : : : : : : Sam : : : : : : : : : : : : : Sam, : : : : : : : : : I am curious too, 6-MP which is similar to Imuran gave me : : : debilitating : : : : : migraines, so now I am on Methotrexate, and have a fever for : : five or : : : six : : : : : days a week, and have caught two colds, and had a bladder : : infection, : : : in : : : : the : : : : : last couple of months.  I don’t like any immunosuppressant : : drugs, : : : and I : : : : am : : : : : really frustrated. : : : : : : : : : *HUGS* : : : : : : : : : Ann : : : : : : : : : : : : : Sam – why would you rather have Imuran than Methotrexate? : I : : got : : : : violently : : : : : ill on Imuran too – and the next drug the doc wants to try : is : : : Meth. : : : : : : : : : : Any advice/suggestions/stories appreciated. : : : : : : : : : : Rebecca :-) : : : : : : : article : : : : : From what I understand, they will increase your dose : until : : (a) : : : : you’re in : : : : : "remission" or (b) your immune system is slightly : depressed. : : : Since : : : : the : : : : : drug can take months to have any effect then this can be : a : : long : : : : process. : : : : : For the record, I was on 100mg, was to increase dosage : but : : had a : : : : couple : : : : : of : : : : : nasty reactions – vomiting and liver problems, so I had : to : : stop : : : : taking : : : : : it. : : : : : I’d rather have Imuran than methotrexate any day. : : : : : : : : : : Sam : : : : : : : : : : : : : : : : What is the maximum dosage for Imuran?  I’m on : 150mg/day : : right : : : : now, : : : : : and : : : : : to make : : : : : : sure I can STAY off the prednisone (I’ll be tapering : from : : : 5mg/day : : : : : soon) : : : : : I : : : : : : wonder if going to 200mg would be a problem?  (Of : course, : : I’ll : : : be : : : : : discussing : : : : : : this with my GI as well)  So what have the highest : doses : : been : : : : here? : : : : : : — : : : : : : Brian Drain : : : : : : http://members.aol.com/preyemuhs – Currently down : : : : : : — : : : : : : ASW Home: http://www.webdesigns1.com/asw : : : : : : : : : : : : : : : : : : : : : : : : : : : : : :

Response:

Sam, At least the headaches aren’t from the meds!  You need to be careful about those car accidents though.  *HUGS* I haven’t been on Pred for about two years, but I was on 6-MP in the mean time.  I was able to get off of the Pred when I had my abcess in my abdominal wall drained.  It turned out that the Pred was actually making the abcess worse, and it was masking it the whole time.  The Pred helped my Crohn’s symptoms, but the masking effect was too dangerous with the abcess thing. I have been in a constant flare for almost the last three years, and unless they start to allow remicade in Canada, the methotrexate is my last hope, before surgery.  Right now the surgery is looking good.  (I would have to have the portion of my transcending colon, that has the fistula that goes to the abcess, removed, and then resected) *HUGS* Ann – Hide quoted text — Show quoted text – I was stuck on 15mg/day prednisolone before I started methotrexate – tried a few times to get below this but straight back into a flare when I did. With methotrexate I am now nearly a month pred free and still in remission – indeed, this is the healthiest (as far as Crohns symptoms are concerned) I’ve been for over 2 years. Bloody headaches are annoying me at the moment, but then, I know what’s causing that and I’ve probably got to claim responsibility for them, so I can’t really complain.  What do you expect when you nearly kill yourself in a car crash and completely stuff up your neck? Sam : Thanks Sam,  I will question my Doc about this.  I know that I feel half : dead most of the time, but I certainly don’t want this drug to kill me! : Just one question though, has the methotrexate reduced your Crohn’s : symptoms?  In what way? : *HUGS* : Ann : Ah, I’m sorry, but months between tests when you’re on methotrexate : strikes : me as a little dangerous.  I was having weekly tests for about 5 months, : onto : fortnightly tests now (one on Friday) and it’s not likely that that will : change in the immediate future.  Methotrexate can have very serious : effects : (like sudden death) so it really needs to be monitored.  I think I read : somewhere that even when you’re stable on it you still need at least : monthly : tests done. : : Good luck, hope you can get this sorted out… : : Sam : : : : Yeah, we have talked about it, but he is hoping that it will start to : help : : me. My blood tests haven’t been too regular to be honest.  I had one : about a : : month and a half ago, and I will have another on Sept 13. : : : *HUGS* : : : Ann : : : : Are you having regular blood tests?  I get the tiredness, no nausea : : (although : : this is listed as a knon side effect I think) and I’m usually okay : within : : 36-48 hours.  Sounds like it might be having a little bit more of an : : effect : : on you than it should… : : Have you discussed the effects with your doctor? : : : : Sam : : : : : : : Sam, : : : : : I am also on 15mg/week.  It makes me really tired for the first few : days : : as : : : well.  I take it on Monday night, I take it with gravol, because it : : : nauseates me, and I basically go right to bed.  After I take it, I : : usually : : : sleep for at least 14 hours, and then I have a low grade fever for : the : : next : : : five or six days.  I have also been catching everything that is : going : : : around.  I have been on it for three months, and I am still going : : : approximately 20 times a day.  Is it just not working for me? : : : : : *HUGS* : : : : : Ann : : : : message : : : Ann, : : : : : : How much methotrexate are you taking? I’m on 15mg/week at the : moment, : : and : : : I don’t think my immune system has suffered greatly, but I’m : : definitely in : : : a ‘bowel-happy’ state at this time. : : : : : : Sam : : : : : : : : : : Sam, : : : : : : : I am curious too, 6-MP which is similar to Imuran gave me : : debilitating : : : : migraines, so now I am on Methotrexate, and have a fever for : five or : : six : : : : days a week, and have caught two colds, and had a bladder : infection, : : in : : : the : : : : last couple of months.  I don’t like any immunosuppressant : drugs, : : and I : : : am : : : : really frustrated. : : : : : : : *HUGS* : : : : : : : Ann : : : : : : : : : : Sam – why would you rather have Imuran than Methotrexate? I : got : : : violently : : : : ill on Imuran too – and the next drug the doc wants to try is : : Meth. : : : : : : : : Any advice/suggestions/stories appreciated. : : : : : : : : Rebecca :-) : : : : : article : : : : From what I understand, they will increase your dose until : (a) : : : you’re in : : : : "remission" or (b) your immune system is slightly depressed. : : Since : : : the : : : : drug can take months to have any effect then this can be a : long : : : process. : : : : For the record, I was on 100mg, was to increase dosage but : had a : : : couple : : : : of : : : : nasty reactions – vomiting and liver problems, so I had to : stop : : : taking : : : : it. : : : : I’d rather have Imuran than methotrexate any day. : : : : : : : : Sam : : : : : : : : : : : : : What is the maximum dosage for Imuran?  I’m on 150mg/day : right : : : now, : : : : and : : : : to make : : : : : sure I can STAY off the prednisone (I’ll be tapering from : : 5mg/day : : : : soon) : : : : I : : : : : wonder if going to 200mg would be a problem?  (Of course, : I’ll : : be : : : : discussing : : : : : this with my GI as well)  So what have the highest doses : been : : : here? : : : : : — : : : : : Brian Drain : : : : : http://members.aol.com/preyemuhs – Currently down : : : : : — : : : : : ASW Home: http://www.webdesigns1.com/asw : : : : : : : : : : : : : : : : : : : :

Response:

I was stuck on 15mg/day prednisolone before I started methotrexate – tried a few times to get below this but straight back into a flare when I did. With methotrexate I am now nearly a month pred free and still in remission – indeed, this is the healthiest (as far as Crohns symptoms are concerned) I’ve been for over 2 years. Bloody headaches are annoying me at the moment, but then, I know what’s causing that and I’ve probably got to claim responsibility for them, so I can’t really complain.  What do you expect when you nearly kill yourself in a car crash and completely stuff up your neck? Sam

: Thanks Sam,  I will question my Doc about this.  I know that I feel half : dead most of the time, but I certainly don’t want this drug to kill me! : Just one question though, has the methotrexate reduced your Crohn’s : symptoms?  In what way? : *HUGS* : Ann : Ah, I’m sorry, but months between tests when you’re on methotrexate : strikes : me as a little dangerous.  I was having weekly tests for about 5 months, : onto : fortnightly tests now (one on Friday) and it’s not likely that that will : change in the immediate future.  Methotrexate can have very serious : effects : (like sudden death) so it really needs to be monitored.  I think I read : somewhere that even when you’re stable on it you still need at least : monthly : tests done. : : Good luck, hope you can get this sorted out… : : Sam : : : : Yeah, we have talked about it, but he is hoping that it will start to : help : : me. My blood tests haven’t been too regular to be honest.  I had one : about a : : month and a half ago, and I will have another on Sept 13. : : : *HUGS* : : : Ann : : : : Are you having regular blood tests?  I get the tiredness, no nausea : : (although : : this is listed as a knon side effect I think) and I’m usually okay : within : : 36-48 hours.  Sounds like it might be having a little bit more of an : : effect : : on you than it should… : : Have you discussed the effects with your doctor? : : : : Sam : : : : : : : Sam, : : : : : I am also on 15mg/week.  It makes me really tired for the first few : days : : as : : : well.  I take it on Monday night, I take it with gravol, because it : : : nauseates me, and I basically go right to bed.  After I take it, I : : usually : : : sleep for at least 14 hours, and then I have a low grade fever for : the : : next : : : five or six days.  I have also been catching everything that is : going : : : around.  I have been on it for three months, and I am still going : : : approximately 20 times a day.  Is it just not working for me? : : : : : *HUGS* : : : : : Ann : : : : : : : Ann, : : : : : : How much methotrexate are you taking? I’m on 15mg/week at the : moment, : : and : : : I don’t think my immune system has suffered greatly, but I’m : : definitely in : : : a ‘bowel-happy’ state at this time. : : : : : : Sam : : : : : : : : : : Sam, : : : : : : : I am curious too, 6-MP which is similar to Imuran gave me : : debilitating : : : : migraines, so now I am on Methotrexate, and have a fever for : five or : : six : : : : days a week, and have caught two colds, and had a bladder : infection, : : in : : : the : : : : last couple of months.  I don’t like any immunosuppressant : drugs, : : and I : : : am : : : : really frustrated. : : : : : : : *HUGS* : : : : : : : Ann : : : : : : : : : : Sam – why would you rather have Imuran than Methotrexate? I : got : : : violently : : : : ill on Imuran too – and the next drug the doc wants to try is : : Meth. : : : : : : : : Any advice/suggestions/stories appreciated. : : : : : : : : Rebecca :-) : : : : : article : : : : From what I understand, they will increase your dose until : (a) : : : you’re in : : : : "remission" or (b) your immune system is slightly depressed. : : Since : : : the : : : : drug can take months to have any effect then this can be a : long : : : process. : : : : For the record, I was on 100mg, was to increase dosage but : had a : : : couple : : : : of : : : : nasty reactions – vomiting and liver problems, so I had to : stop : : : taking : : : : it. : : : : I’d rather have Imuran than methotrexate any day. : : : : : : : : Sam : : : : : : : : : : : : : What is the maximum dosage for Imuran?  I’m on 150mg/day : right : : : now, : : : : and : : : : to make : : : : : sure I can STAY off the prednisone (I’ll be tapering from : : 5mg/day : : : : soon) : : : : I : : : : : wonder if going to 200mg would be a problem?  (Of course, : I’ll : : be : : : : discussing : : : : : this with my GI as well)  So what have the highest doses : been : : : here? : : : : : — : : : : : Brian Drain : : : : : http://members.aol.com/preyemuhs – Currently down : : : : : — : : : : : ASW Home: http://www.webdesigns1.com/asw : : : : : : : : : : : : : : : : : : : :

Response:

Thanks Sam,  I will question my Doc about this.  I know that I feel half dead most of the time, but I certainly don’t want this drug to kill me! Just one question though, has the methotrexate reduced your Crohn’s symptoms?  In what way? *HUGS* Ann – Hide quoted text — Show quoted text – Ah, I’m sorry, but months between tests when you’re on methotrexate strikes me as a little dangerous.  I was having weekly tests for about 5 months, onto fortnightly tests now (one on Friday) and it’s not likely that that will change in the immediate future.  Methotrexate can have very serious effects (like sudden death) so it really needs to be monitored.  I think I read somewhere that even when you’re stable on it you still need at least monthly tests done. Good luck, hope you can get this sorted out… Sam : Yeah, we have talked about it, but he is hoping that it will start to help : me. My blood tests haven’t been too regular to be honest.  I had one about a : month and a half ago, and I will have another on Sept 13. : *HUGS* : Ann : Are you having regular blood tests?  I get the tiredness, no nausea : (although : this is listed as a knon side effect I think) and I’m usually okay within : 36-48 hours.  Sounds like it might be having a little bit more of an : effect : on you than it should… : Have you discussed the effects with your doctor? : : Sam : : : : Sam, : : : I am also on 15mg/week.  It makes me really tired for the first few days : as : : well.  I take it on Monday night, I take it with gravol, because it : : nauseates me, and I basically go right to bed.  After I take it, I : usually : : sleep for at least 14 hours, and then I have a low grade fever for the : next : : five or six days.  I have also been catching everything that is going : : around.  I have been on it for three months, and I am still going : : approximately 20 times a day.  Is it just not working for me? : : : *HUGS* : : : Ann : : : : Ann, : : : : How much methotrexate are you taking? I’m on 15mg/week at the moment, : and : : I don’t think my immune system has suffered greatly, but I’m : definitely in : : a ‘bowel-happy’ state at this time. : : : : Sam : : : : : : : Sam, : : : : : I am curious too, 6-MP which is similar to Imuran gave me : debilitating : : : migraines, so now I am on Methotrexate, and have a fever for five or : six : : : days a week, and have caught two colds, and had a bladder infection, : in : : the : : : last couple of months.  I don’t like any immunosuppressant drugs, : and I : : am : : : really frustrated. : : : : : *HUGS* : : : : : Ann : : : : : : : Sam – why would you rather have Imuran than Methotrexate? I got : : violently : : : ill on Imuran too – and the next drug the doc wants to try is : Meth. : : : : : : Any advice/suggestions/stories appreciated. : : : : : : Rebecca :-) : : : article : : : From what I understand, they will increase your dose until (a) : : you’re in : : : "remission" or (b) your immune system is slightly depressed. : Since : : the : : : drug can take months to have any effect then this can be a long : : process. : : : For the record, I was on 100mg, was to increase dosage but had a : : couple : : : of : : : nasty reactions – vomiting and liver problems, so I had to stop : : taking : : : it. : : : I’d rather have Imuran than methotrexate any day. : : : : : : Sam : : : : : : : : : : What is the maximum dosage for Imuran?  I’m on 150mg/day right : : now, : : : and : : : to make : : : : sure I can STAY off the prednisone (I’ll be tapering from : 5mg/day : : : soon) : : : I : : : : wonder if going to 200mg would be a problem?  (Of course, I’ll : be : : : discussing : : : : this with my GI as well)  So what have the highest doses been : : here? : : : : — : : : : Brian Drain : : : : http://members.aol.com/preyemuhs – Currently down : : : : — : : : : ASW Home: http://www.webdesigns1.com/asw : : : : : : : : : : : :

Response:

Ah, I’m sorry, but months between tests when you’re on methotrexate strikes me as a little dangerous.  I was having weekly tests for about 5 months, onto fortnightly tests now (one on Friday) and it’s not likely that that will change in the immediate future.  Methotrexate can have very serious effects (like sudden death) so it really needs to be monitored.  I think I read somewhere that even when you’re stable on it you still need at least monthly tests done. Good luck, hope you can get this sorted out… Sam

: Yeah, we have talked about it, but he is hoping that it will start to help : me. My blood tests haven’t been too regular to be honest.  I had one about a : month and a half ago, and I will have another on Sept 13. : *HUGS* : Ann : Are you having regular blood tests?  I get the tiredness, no nausea : (although : this is listed as a knon side effect I think) and I’m usually okay within : 36-48 hours.  Sounds like it might be having a little bit more of an : effect : on you than it should… : Have you discussed the effects with your doctor? : : Sam : : : : Sam, : : : I am also on 15mg/week.  It makes me really tired for the first few days : as : : well.  I take it on Monday night, I take it with gravol, because it : : nauseates me, and I basically go right to bed.  After I take it, I : usually : : sleep for at least 14 hours, and then I have a low grade fever for the : next : : five or six days.  I have also been catching everything that is going : : around.  I have been on it for three months, and I am still going : : approximately 20 times a day.  Is it just not working for me? : : : *HUGS* : : : Ann : : : : Ann, : : : : How much methotrexate are you taking? I’m on 15mg/week at the moment, : and : : I don’t think my immune system has suffered greatly, but I’m : definitely in : : a ‘bowel-happy’ state at this time. : : : : Sam : : : : : : : Sam, : : : : : I am curious too, 6-MP which is similar to Imuran gave me : debilitating : : : migraines, so now I am on Methotrexate, and have a fever for five or : six : : : days a week, and have caught two colds, and had a bladder infection, : in : : the : : : last couple of months.  I don’t like any immunosuppressant drugs, : and I : : am : : : really frustrated. : : : : : *HUGS* : : : : : Ann : : : : : : : Sam – why would you rather have Imuran than Methotrexate? I got : : violently : : : ill on Imuran too – and the next drug the doc wants to try is : Meth. : : : : : : Any advice/suggestions/stories appreciated. : : : : : : Rebecca :-) : : : : : : From what I understand, they will increase your dose until (a) : : you’re in : : : "remission" or (b) your immune system is slightly depressed. : Since : : the : : : drug can take months to have any effect then this can be a long : : process. : : : For the record, I was on 100mg, was to increase dosage but had a : : couple : : : of : : : nasty reactions – vomiting and liver problems, so I had to stop : : taking : : : it. : : : I’d rather have Imuran than methotrexate any day. : : : : : : Sam : : : : : : : : : : What is the maximum dosage for Imuran?  I’m on 150mg/day right : : now, : : : and : : : to make : : : : sure I can STAY off the prednisone (I’ll be tapering from : 5mg/day : : : soon) : : : I : : : : wonder if going to 200mg would be a problem?  (Of course, I’ll : be : : : discussing : : : : this with my GI as well)  So what have the highest doses been : : here? : : : : — : : : : Brian Drain : : : : http://members.aol.com/preyemuhs – Currently down : : : : — : : : : ASW Home: http://www.webdesigns1.com/asw : : : : : : : : : : : :

Response:

Yeah, we have talked about it, but he is hoping that it will start to help me. My blood tests haven’t been too regular to be honest.  I had one about a month and a half ago, and I will have another on Sept 13. *HUGS* Ann – Hide quoted text — Show quoted text – Are you having regular blood tests?  I get the tiredness, no nausea (although this is listed as a knon side effect I think) and I’m usually okay within 36-48 hours.  Sounds like it might be having a little bit more of an effect on you than it should… Have you discussed the effects with your doctor? Sam : Sam, : I am also on 15mg/week.  It makes me really tired for the first few days as : well.  I take it on Monday night, I take it with gravol, because it : nauseates me, and I basically go right to bed.  After I take it, I usually : sleep for at least 14 hours, and then I have a low grade fever for the next : five or six days.  I have also been catching everything that is going : around.  I have been on it for three months, and I am still going : approximately 20 times a day.  Is it just not working for me? : *HUGS* : Ann : Ann, : : How much methotrexate are you taking? I’m on 15mg/week at the moment, and : I don’t think my immune system has suffered greatly, but I’m definitely in : a ‘bowel-happy’ state at this time. : : Sam : : : : Sam, : : : I am curious too, 6-MP which is similar to Imuran gave me debilitating : : migraines, so now I am on Methotrexate, and have a fever for five or six : : days a week, and have caught two colds, and had a bladder infection, in : the : : last couple of months.  I don’t like any immunosuppressant drugs, and I : am : : really frustrated. : : : *HUGS* : : : Ann : : : : Sam – why would you rather have Imuran than Methotrexate? I got : violently : : ill on Imuran too – and the next drug the doc wants to try is Meth. : : : : Any advice/suggestions/stories appreciated. : : : : Rebecca :-) : : : : From what I understand, they will increase your dose until (a) : you’re in : : "remission" or (b) your immune system is slightly depressed. Since : the : : drug can take months to have any effect then this can be a long : process. : : For the record, I was on 100mg, was to increase dosage but had a : couple : : of : : nasty reactions – vomiting and liver problems, so I had to stop : taking : : it. : : I’d rather have Imuran than methotrexate any day. : : : : Sam : : : : : : : What is the maximum dosage for Imuran?  I’m on 150mg/day right : now, : : and : : to make : : : sure I can STAY off the prednisone (I’ll be tapering from 5mg/day : : soon) : : I : : : wonder if going to 200mg would be a problem?  (Of course, I’ll be : : discussing : : : this with my GI as well)  So what have the highest doses been : here? : : : — : : : Brian Drain : : : http://members.aol.com/preyemuhs – Currently down : : : — : : : ASW Home: http://www.webdesigns1.com/asw : : : : : :

Response:

Are you having regular blood tests?  I get the tiredness, no nausea (although this is listed as a knon side effect I think) and I’m usually okay within 36-48 hours.  Sounds like it might be having a little bit more of an effect on you than it should… Have you discussed the effects with your doctor? Sam

: Sam, : I am also on 15mg/week.  It makes me really tired for the first few days as : well.  I take it on Monday night, I take it with gravol, because it : nauseates me, and I basically go right to bed.  After I take it, I usually : sleep for at least 14 hours, and then I have a low grade fever for the next : five or six days.  I have also been catching everything that is going : around.  I have been on it for three months, and I am still going : approximately 20 times a day.  Is it just not working for me? : *HUGS* : Ann : Ann, : : How much methotrexate are you taking? I’m on 15mg/week at the moment, and : I don’t think my immune system has suffered greatly, but I’m definitely in : a ‘bowel-happy’ state at this time. : : Sam : : : : Sam, : : : I am curious too, 6-MP which is similar to Imuran gave me debilitating : : migraines, so now I am on Methotrexate, and have a fever for five or six : : days a week, and have caught two colds, and had a bladder infection, in : the : : last couple of months.  I don’t like any immunosuppressant drugs, and I : am : : really frustrated. : : : *HUGS* : : : Ann : : : : Sam – why would you rather have Imuran than Methotrexate? I got : violently : : ill on Imuran too – and the next drug the doc wants to try is Meth. : : : : Any advice/suggestions/stories appreciated. : : : : Rebecca :-) : : : : From what I understand, they will increase your dose until (a) : you’re in : : "remission" or (b) your immune system is slightly depressed.  Since : the : : drug can take months to have any effect then this can be a long : process. : : For the record, I was on 100mg, was to increase dosage but had a : couple : : of : : nasty reactions – vomiting and liver problems, so I had to stop : taking : : it. : : I’d rather have Imuran than methotrexate any day. : : : : Sam : : : : : : : What is the maximum dosage for Imuran?  I’m on 150mg/day right : now, : : and : : to make : : : sure I can STAY off the prednisone (I’ll be tapering from 5mg/day : : soon) : : I : : : wonder if going to 200mg would be a problem?  (Of course, I’ll be : : discussing : : : this with my GI as well)  So what have the highest doses been : here? : : : — : : : Brian Drain : : : http://members.aol.com/preyemuhs – Currently down : : : — : : : ASW Home: http://www.webdesigns1.com/asw : : : : : :

Response:

Sam, I am also on 15mg/week.  It makes me really tired for the first few days as well.  I take it on Monday night, I take it with gravol, because it nauseates me, and I basically go right to bed.  After I take it, I usually sleep for at least 14 hours, and then I have a low grade fever for the next five or six days.  I have also been catching everything that is going around.  I have been on it for three months, and I am still going approximately 20 times a day.  Is it just not working for me? *HUGS* Ann – Hide quoted text — Show quoted text – Ann, How much methotrexate are you taking? I’m on 15mg/week at the moment, and I don’t think my immune system has suffered greatly, but I’m definitely in a ‘bowel-happy’ state at this time. Sam : Sam, : I am curious too, 6-MP which is similar to Imuran gave me debilitating : migraines, so now I am on Methotrexate, and have a fever for five or six : days a week, and have caught two colds, and had a bladder infection, in the : last couple of months.  I don’t like any immunosuppressant drugs, and I am : really frustrated. : *HUGS* : Ann : Sam – why would you rather have Imuran than Methotrexate? I got violently : ill on Imuran too – and the next drug the doc wants to try is Meth. : : Any advice/suggestions/stories appreciated. : : Rebecca :-) : : From what I understand, they will increase your dose until (a) you’re in : "remission" or (b) your immune system is slightly depressed.  Since the : drug can take months to have any effect then this can be a long process. : For the record, I was on 100mg, was to increase dosage but had a couple : of : nasty reactions – vomiting and liver problems, so I had to stop taking : it. : I’d rather have Imuran than methotrexate any day. : : Sam : : : : What is the maximum dosage for Imuran?  I’m on 150mg/day right now, : and : to make : : sure I can STAY off the prednisone (I’ll be tapering from 5mg/day : soon) : I : : wonder if going to 200mg would be a problem?  (Of course, I’ll be : discussing : : this with my GI as well)  So what have the highest doses been here? : : — : : Brian Drain : : http://members.aol.com/preyemuhs – Currently down : : — : : ASW Home: http://www.webdesigns1.com/asw : :

Response:

Ann, How much methotrexate are you taking? I’m on 15mg/week at the moment, and I don’t think my immune system has suffered greatly, but I’m definitely in a ‘bowel-happy’ state at this time. Sam

: Sam, : I am curious too, 6-MP which is similar to Imuran gave me debilitating : migraines, so now I am on Methotrexate, and have a fever for five or six : days a week, and have caught two colds, and had a bladder infection, in the : last couple of months.  I don’t like any immunosuppressant drugs, and I am : really frustrated. : *HUGS* : Ann : Sam – why would you rather have Imuran than Methotrexate? I got violently : ill on Imuran too – and the next drug the doc wants to try is Meth. : : Any advice/suggestions/stories appreciated. : : Rebecca :-) : : From what I understand, they will increase your dose until (a) you’re in : "remission" or (b) your immune system is slightly depressed.  Since the : drug can take months to have any effect then this can be a long process. : For the record, I was on 100mg, was to increase dosage but had a couple : of : nasty reactions – vomiting and liver problems, so I had to stop taking : it. : I’d rather have Imuran than methotrexate any day. : : Sam : : : : What is the maximum dosage for Imuran?  I’m on 150mg/day right now, : and : to make : : sure I can STAY off the prednisone (I’ll be tapering from 5mg/day : soon) : I : : wonder if going to 200mg would be a problem?  (Of course, I’ll be : discussing : : this with my GI as well)  So what have the highest doses been here? : : — : : Brian Drain : : http://members.aol.com/preyemuhs – Currently down : : — : : ASW Home: http://www.webdesigns1.com/asw : :

Response:

Well, let’s see – Imuran (apart from the nausea and liver problems which made it totally unsuitable for me) gave me no trouble whatsoever for an entire month – it took that long for me to develop any reaction to it. As for methotrexate – well, you’ve got to be impressed with any drug that lists "sudden death" as a possible side effect. For me, the effect has varied with time. I started on 7.5mg/week, taken on a Saturday. This turned out to be a really good thing, because it just happened to completely knock me senseless for about 36 hours the first few doses.  I wouldn’t have been able to walk a straight line if my life depended on it, I was popping Panadeine (equivalent to Tylenol 3 I think) like there was no tomorrow for the headaches that were probably closer to migraines, and I couldn’t concentrate on anything.  Lots of fun. Then I got used to it, I was on 7.5mg for about 8 weeks in total. Then the doctor says that I need to go to 15mg/week.  I’m thinking "here we go again" but this time there was no problem, apart from some pretty severe fatigue, that lasts for about 36 hours.  Now I get the occasional headache, and I think I’ve figured out how to overcome the fatigue part – go and run around on a hockey field like an idiot for a couple of hours after you’ve taken your weekly dose and you will expect to be tired anyway. I simply find that the methotrexate has more side effects than Imuran did (when I could still handle it), and if I could take azathioprine or 6-mercaptopurine then I would. Sam

: Sam – why would you rather have Imuran than Methotrexate? I got violently : ill on Imuran too – and the next drug the doc wants to try is Meth. : Any advice/suggestions/stories appreciated. : Rebecca :-) : From what I understand, they will increase your dose until (a) you’re in : "remission" or (b) your immune system is slightly depressed.  Since the : drug can take months to have any effect then this can be a long process. : For the record, I was on 100mg, was to increase dosage but had a couple : of : nasty reactions – vomiting and liver problems, so I had to stop taking : it. : I’d rather have Imuran than methotrexate any day. : : Sam : : : : What is the maximum dosage for Imuran?  I’m on 150mg/day right now, and : to make : : sure I can STAY off the prednisone (I’ll be tapering from 5mg/day soon) : I : : wonder if going to 200mg would be a problem?  (Of course, I’ll be : discussing : : this with my GI as well)  So what have the highest doses been here? : : — : : Brian Drain : : http://members.aol.com/preyemuhs – Currently down : : — : : ASW Home: http://www.webdesigns1.com/asw : :

Response:

Sam, I am curious too, 6-MP which is similar to Imuran gave me debilitating migraines, so now I am on Methotrexate, and have a fever for five or six days a week, and have caught two colds, and had a bladder infection, in the last couple of months.  I don’t like any immunosuppressant drugs, and I am really frustrated. *HUGS* Ann

– Hide quoted text — Show quoted text – Sam – why would you rather have Imuran than Methotrexate? I got violently ill on Imuran too – and the next drug the doc wants to try is Meth. Any advice/suggestions/stories appreciated. Rebecca :-) From what I understand, they will increase your dose until (a) you’re in "remission" or (b) your immune system is slightly depressed.  Since the drug can take months to have any effect then this can be a long process. For the record, I was on 100mg, was to increase dosage but had a couple of nasty reactions – vomiting and liver problems, so I had to stop taking it. I’d rather have Imuran than methotrexate any day. Sam : What is the maximum dosage for Imuran?  I’m on 150mg/day right now, and to make : sure I can STAY off the prednisone (I’ll be tapering from 5mg/day soon) I : wonder if going to 200mg would be a problem?  (Of course, I’ll be discussing : this with my GI as well)  So what have the highest doses been here? : — : Brian Drain : http://members.aol.com/preyemuhs – Currently down : — : ASW Home: http://www.webdesigns1.com/asw

Response:

Sam – why would you rather have Imuran than Methotrexate? I got violently ill on Imuran too – and the next drug the doc wants to try is Meth. Any advice/suggestions/stories appreciated. Rebecca :-) – Hide quoted text — Show quoted text – From what I understand, they will increase your dose until (a) you’re in "remission" or (b) your immune system is slightly depressed.  Since the drug can take months to have any effect then this can be a long process. For the record, I was on 100mg, was to increase dosage but had a couple of nasty reactions – vomiting and liver problems, so I had to stop taking it. I’d rather have Imuran than methotrexate any day. Sam : What is the maximum dosage for Imuran?  I’m on 150mg/day right now, and to make : sure I can STAY off the prednisone (I’ll be tapering from 5mg/day soon) I : wonder if going to 200mg would be a problem?  (Of course, I’ll be discussing : this with my GI as well)  So what have the highest doses been here? : — : Brian Drain : http://members.aol.com/preyemuhs – Currently down : — : ASW Home: http://www.webdesigns1.com/asw

Response:

What is the maximum dosage for Imuran?

I have no idea what the MAXIMUM dosage would be, but I have been taking 250mg/day for a few years now with wonderful results.  I am so happy for you that you will be able to be off the prednisone.  As you know, this disease affects each of us differently, and, unfortunately, I will  never be completely off the prednisone.  However, I have gone down from 80mg/day to currently 20mg with the hopes of holding at 10.  I wish you all the best.  Just be sure to follow up on all your blood work while on Imuran.  It is so important. Especially if the medication works so well!  Don’t be afraid.  You will probably feel no ill effects if they increase your dosage.  You will only feel better.  Stay well. Margie  :-)

Response:

  I have been on 250mg a day of Imuran for several years now. I have also been off the pred. for about as long. I don’t know what the max dose is but my white count has been steady between 8 and 10. I thought it would have gone down farther being on such a high dose. — Charles ICQ# 7814843 http://www2.whidbey.net/cswain/

Response:

What is the maximum dosage for Imuran?  I’m on 150mg/day right now, and to make sure I can STAY off the prednisone (I’ll be tapering from 5mg/day soon) I wonder if going to 200mg would be a problem?  (Of course, I’ll be discussing this with my GI as well)  So what have the highest doses been here? — Brian Drain http://members.aol.com/preyemuhs – Currently down — ASW Home: http://www.webdesigns1.com/asw

Response:

From what I understand, they will increase your dose until (a) you’re in "remission" or (b) your immune system is slightly depressed.  Since the drug can take months to have any effect then this can be a long process. For the record, I was on 100mg, was to increase dosage but had a couple of nasty reactions – vomiting and liver problems, so I had to stop taking it. I’d rather have Imuran than methotrexate any day. Sam

: What is the maximum dosage for Imuran?  I’m on 150mg/day right now, and to make : sure I can STAY off the prednisone (I’ll be tapering from 5mg/day soon) I : wonder if going to 200mg would be a problem?  (Of course, I’ll be discussing : this with my GI as well)  So what have the highest doses been here? : — : Brian Drain : http://members.aol.com/preyemuhs – Currently down : — : ASW Home: http://www.webdesigns1.com/asw

Response:

I was on 150mg, and it wreaked havoc on my white blood count.  I’m on 125 right now and the counts are low but still acceptable.  I think I remember reading a post from someone here that they were on 250 or 300 and I was duly impressed.   IMHO, it doesn’t matter how much *you* are on. If it works, more power to you.  Just don’t sacrifice anything else for it. Chris

Response:

Drinking the Water

Question:

Connie- LOL!   Wouldn’t that be something.  Your 15 minutes of fame?? Tracy

Response:

Connie – Could you drag the truck while building that PIII you mentioned in another thread? Now that’s something I’d like to see! Pretty tricky… LOL thanks for the chuckle, I surely needed it! flipper

Response:

If my a** were so smart I wouldn’t have IBD!!!!! Rebecca :-) – Hide quoted text — Show quoted text – Smart ass   : )        Luv,          Emi No – I’ve never been invited to your grandmother’s home. <G Rebecca :-) I seem to have problems when I drink strange water…like at the beach or at my grandmother’s well fed home…anyone else have this problem????

Response:

Now, children be nice. Billy P Brown

Response:

No not smart as-, because neithe have I been invited.  I think at least a viable number of us should drink before a good consensus can be taken. Love with hugs & kisses Susan

Response:

you guys are having so much fun I hate to give a serious answer, but for 22 years or so I have only drank bottled water.  Always had worse diarrhea after drinking water that wasn’t bottled.  Drinking the bottled water has at least eliminated one source of trouble, plenty others left. I told someone that my sphincter muscle is so strong from trying to get to the bathroom that I could probably go on TV Guinness book of records and drag a truck with a chain with my ass for about 20 feet. Some claim to fame huh???  LOL Regards, Connie

– Hide quoted text — Show quoted text – I have a real bad time with strange water, mostly water that is treated with some kind of salt brine and chlorine. It took a long time to figure out that the water I was drinking in the town where I worked outside. Was killing me. And that was near the Long Island Sound, Hmmm that LI water thing again, — Bob AKA blsri www.bobcomp.com I seem to have problems when I drink strange water…like at the beach or at my grandmother’s well fed home…anyone else have this problem????

Response:

I have a real bad time with strange water, mostly water that is treated with some kind of salt brine and chlorine. It took a long time to figure out that the water I was drinking in the town where I worked outside. Was killing me. And that was near the Long Island Sound, Hmmm that LI water thing again, — Bob AKA blsri www.bobcomp.com

– Hide quoted text — Show quoted text – I seem to have problems when I drink strange water…like at the beach or at my grandmother’s well fed home…anyone else have this problem????

Response:

No – I’ve never been invited to your grandmother’s home. <G Rebecca :-) – Hide quoted text — Show quoted text – I seem to have problems when I drink strange water…like at the beach or at my grandmother’s well fed home…anyone else have this problem????

Response:

Maryjo

Response:

I would prefer to be blitzed outta pain but I know if I got blitzed i would pay for it later  by bowing to the porcelin god : )  Emi – Hide quoted text — Show quoted text – Maryjo

Response:

Smart ass   : )        Luv,          Emi – Hide quoted text — Show quoted text – No – I’ve never been invited to your grandmother’s home. <G Rebecca :-) I seem to have problems when I drink strange water…like at the beach or at my grandmother’s well fed home…anyone else have this problem????

Response:

THe way i see it we have smart asses and we go with our gut when we make decisions……    ; ) – Hide quoted text — Show quoted text – If my a** were so smart I wouldn’t have IBD!!!!! Rebecca :-) Smart ass   : )        Luv,          Emi No – I’ve never been invited to your grandmother’s home. <G Rebecca :-) I seem to have problems when I drink strange water…like at the beach or at my grandmother’s well fed home…anyone else have this problem????

Response:

I seem to have problems when I drink strange water…like at the beach or at my grandmother’s well fed home…anyone else have this problem????

Response:

does the well contain LONG ISLAND WATER ???? Maryjo

Response:

No, why???    If it did I would make Long Island Iced tea and then I would be in severe pain but not give a rip cuz I would be blitzed outta my mind  ; ) – Hide quoted text — Show quoted text – does the well contain LONG ISLAND WATER ???? Maryjo

Response:

I seem to have problems when I drink strange water…like at the beach or at my grandmother’s well fed home…anyone else have this problem????

I had crohns symptoms while I was living in Waterloo, Ontario in CANADA.  It was well known that the water there is extremely hard.  I briefly heard a DJ on a local radio station "the water in Waterloo causes diarrhea!". I never came across a verifiable reference, but I don’t think the DJ was talking about bacteria.  It might be magnesium or some other mineral in the water.  There is also the question of whether it just irritated my crohns inflammed insides or really made the crohns progress. After moving to NJ, USA, my symptoms went away for a few years but then came back so bad the doctors X-rayed me, finally diagnosed crohns and did surgery. Doug Wiedemann

Response:

Alternative Medicine and UC

Question:

I have had UC for 4 years with a severe flare up recently which was not controlled with prednisone. I am interested in trying alternative medicine and was wondering if anyone else had ever tried this approach to control colitis or crohns symptoms.

Be careful. There are of lots of bogus ideas and therapies out there.

Response:

I have had UC for 4 years with a severe flare up recently which was not controlled with prednisone. I am interested in trying alternative medicine and was wondering if anyone else had ever tried this approach to control colitis or crohns symptoms. thanks.

So what are you doing now? How bad is it? Can you eat and work? I’m interested because I’m in the same boat and the Dr. says the next step is hospitalization and if that fails we think about removing the colon? Please respond to the NG. My email address is fake for personal reasons.

Response:

I have had UC for 4 years with a severe flare up recently which was not controlled with prednisone. I am interested in trying alternative medicine and was wondering if anyone else had ever tried this approach to control colitis or crohns symptoms. thanks. So what are you doing now? How bad is it? Can you eat and work? I’m interested because I’m in the same boat and the Dr. says the next step is hospitalization and if that fails we think about removing the colon? Please respond to the NG. My email address is fake for personal reasons.

Yes, I can eat and don’t work (am a stay-at-home mom). My "only" problem is chronic diarrhea — going to the bathroom 10-12 times/day. Other than that I don’t feel too bad but can’t keep on like this for much longer.

Response:

So what are you doing now? How bad is it? Can you eat and work? I’m interested because I’m in the same boat and the Dr. says the next step is hospitalization and if that fails we think about removing the colon? Please respond to the NG. My email address is fake for personal reasons. Yes, I can eat and don’t work (am a stay-at-home mom). My "only" problem is chronic diarrhea — going to the bathroom 10-12 times/day. Other than that I don’t feel too bad but can’t keep on like this for much longer.

Try taking a bunch of calcium daily (like at least 1,000mg, more like 1,500mg), calcium can help with the diarrhea.  Also try immodium if you haven’t already.   —

Response:

I have had UC for 4 years with a severe flare up recently which was not controlled with prednisone. I am interested in trying alternative medicine and was wondering if anyone else had ever tried this approach to control colitis or crohns symptoms. thanks.

Response:

Can HRT/ the menopause trigger onset of Crohns?

Question:

Within four months of the menopause/ starting Hormone Replacement Therapy I developed IBD (diagnosis unclear, possibly Crohns). Has this happened to anyone else? Any connection known or suspected? Please let me know – I’ve been assured that there’s no connection known, so have continued the HRT (and continued to have Crohns symptoms) for the past 3 years. Joan

Response:

Joan, You may have hit upon something.  I was diagnosed with ulcerative gastritis (gastritis rather than colitis due to being lower in the large intestine) a very short time after starting Hormone Replacement Therapy.  It never occurred to me that there might be a connection–will ask my GI if any posibility Thanks, Jane

Response:

Crohns affecting sex

Question:

#1 i also have noticed that sexual relations are painfull since my crohns has advanced. #2 dont worry about the relationship ending,  you wukk sinedat meet someone that it will not matter to.  if a man loves you it will not matter to him whether or not you are able to have relations whenever he wants too. you ask how i know well i am married i have been diagnosed with crohns since aug. 91.  My husband has stood by me no matter what so dont worry, date and enjoy yourself when the relationship is right you will know it and he will not care that you cannot always meet his needs. if you need to talk

Response:

oops – did that again…… I have 2 good friends who also have crohns as I do.  We joke about sex and crohns frequently but here is what we’ve found….When I’m having a flare – my interest in sex diminishes – but not my husbands :*)….One friend  reports her and her husband went 6 months without during a flare.  The other states she continues to have sex but not very often. so there does seem to be an abvious effect which I feel is often related to eating.  If I don’t eat – I enjoy sex more.  Since this is not a good solution, I have found a couple ways to improve the odds….. I try to "schedule" sex during the day more often.  I don’t have as many crohns symptoms to deal with as I do in the afternoon/evening.   Another option is eating a later lunch and schedule supper AFTER the deed!!! Or – go for the alternatives to intercourse …… I’ve found that my husband can be just as happy looking over the top of my head as he is when he looks into my eyes!!!!!  (its ok to smile at that one!!!!) I’ve come to believe that the important thing to remember is that even tho we are ill, our partners are not and can still experiance the same sex drive as when we are well.  So just as I need compromises to acccommodate my health, I am happy to find ways to accommodate HIS needs. I may not always feel well, and my belly bloats uncomfortably, but I can certainly still move my hand:), and bobbing your head doesn’t make you feel ALL that much worse than you already may ;) , I also seem to get the damn yeast infections more frequently than others may, so this also effects  my ability to actually have intercourse. But I will still get into the lacy/frilly thing even if its just to appease his visual desire. And sometimes I find out that even tho I thought I COULDn’t or WASN’T in the mood, something happens along the way and suddenly I’M the one who benefited!!!! But – as a disclaimer, I also must add…..it DOES take an understanding partner  -

Response:

- Hide quoted text — Show quoted text – I am 21 years old and was diagnosed with Crohns about a year and a half ago, I have recently split with my boyfriend who was with me before my diagnosis. Since I was diagnosed with Crohns, I have found it hard to live a normal sex life, finding that I get very bad abdominal pains whilst having sex.  My boyfriend couldn’t handle being in a long term serious relationship with hardly any sex,  which is why the relationship ended a couple of months ago. I have recently started seeing someone new, but am worried that the same thing will happen again. Has anyone else ever suffered problems whilst having sex, and has anyone had their partner leave them because of this and has anyone found that that it does actually get better, I’m too scared to get envolved in another relationship, and have my partner tell me that he understands, and he’ll stick by me, only then to turn around and say that they cant handle it. It hurts. I don’t want to get hurt again, just because of my disease. Michelle

Response:

Yup, I have to agree. Best Friends first then the fun comes later.  :)  My boyfriend and I are best friends.  Sometimes we are more friends than lovers. But when we do happen to have a little fun "WATCH OUT".  HaHa  :)  :)  Gee, am I glad to have such a wonderful friend.  :) When I am having a flare up, he is the most supporting person in the world to me.  He takes care of me and does what he can to help.  But when I am feeling good, we make up for lost time.  :) Regards, Wanda – Hide quoted text — Show quoted text – You need to be dating a better quality of person. Sex should be icing on the cake, not the cake itself. Dan

Response:

Hi Blanche, it is the side-effects of medicine like prednison or the pain and menthal health which effects the libido. When you have the partner who acts correctly it is okay. But any partner who loves you will act correctly!! – Hide quoted text — Show quoted text – on this same topic, has anyone else experienced a total lack of libido? I’m not sure if it’s the meds or the disease….. – Blanche F.

Response:

Thank You thank You Thank YOu Thank YOu. Who many different ways can I say it. I was constantly depressed about two years after I was diagnosed and after 3 surgerys. It wasn’t until five years ago after a real bad almost fatal surgery( some surgeons graduated from the BOTTOM of their class) that my new internal medicine doc put me on antidepressants for chronic pain did I finally start to feel human again. It also helps a tone with my now serious chronic pain for adhesions, unfortunately after having peritenitis you can get adhesions even worse then usual. I am glad to see that other people are finding that they don’t always match  up with here first or so on GI doctor. BTW I was on amytriptaline for a long time and it made my mouth very dry I am now on a different one I am sorry  I don

Life Insurance problem w/ CD

Question:

Hi- I have UC for 9 years now BCIR.  My grandmother also had IBD, so far my son shows no signs and I pray NEVER does.

Response:

My daughter was diagnosed at 3 months of age at John’s Hopkins, My wife has it, My wife’s sister has it.  Their father has it.  Cedar Sinai out in LA has identified three suspect genes as part as part of the human gene mapping project. – Hide quoted text — Show quoted text – Sue, I don’t think your results are accurate. As far as I’ve read in the 2months I’ve been enjoying this Newsgroup, I’m seeing something like 80%+ IBD symptoms showing in contributors children. Lots and lots of recent posts in this group about expectant mothers and new mothers. So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type? Lets do our own little survey, could be very educational for all…. Grundman

Response:

- Hide quoted text — Show quoted text – So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type? Lets do our own little survey, could be very educational for all…. No signs yet, thank G-d. BTW nobody else in my family has any kind of IBD. Be well, Hadass (posted & mailed) — National Research Council of Canada Phone: (204) 984 – 4535 Institute for Biodiagnostics        Fax:   (204) 984 – 7036 435 Ellice Avenue, Winnipeg,MB,R3B 1Y6 http://www.ibd.nrc.ca/~eviatar Obligatory disclaimer: NRC wouldn’t dream of saying a thing like that.

  To whom it may concern:  I was diagnosed with crohns at 25, my sister was diagnosed at 18 and my dad has uc-I had two children and one who is now 4 presented with crohns symptoms at 2WEEKS OF AGE. She was scoped at Johns Hopkins at 3 mos and the pathologist thought she was someone who had crohns for 20 yrs-she was inflammed from throat to butt. From their study they have concluded when their is a familial link-that each generation gets is worse then the one before. Also they believe now she has a crohns type unique only to her. Good Luck to everyone who lives with this lousy disease.

Response:

I have one son, age 10, who was diagnosed with Crohns at age 4…… – Hide quoted text — Show quoted text – So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type? One child 7 years old  NO. But Once in a while I worry that some day she might. — Paul Roue 105 W. 2nd Ave N. Aurora MN 55705 NALC Member Br. 5213 Hoyt Lakes, MN 55750 NRA Life-Member "If you cannot answer a man’s argument, do not panic. You can always call him names."                                 Oscar wilde

Response:

A: If you have Crohn’s Disease, there is a 5% chance that one of your first-degree relatives (parent, child, sibling) will develop either Ulcerative Colitis (UC) or Crohn’s Disease (CD) in their lifetime. The chance that a first-degree relative of yours w ould develop IBD (either Ulcerative Colitis or Crohn’s Disease) is lower (less than 2%) if you have Ulcerative Colitis. These percentages are slightly higher in Jewish families and in those families where multiple members are already affected by IBD."

Thanks, Sue, that’s very comforting to know! We are Jewish, but OTOH I have UC, so let’s hope we beat the percentages … Be well, Hadass (posted & e-mailed) — National Research Council of Canada Phone: (204) 984 – 4535 Institute for Biodiagnostics        Fax:   (204) 984 – 7036 435 Ellice Avenue, Winnipeg,MB,R3B 1Y6 http://www.ibd.nrc.ca/~eviatar   Obligatory disclaimer: NRC wouldn’t dream of saying a thing like that.

Response:

– Sue, I don’t think your results are accurate. As far as I’ve read in the – 2months I’ve been enjoying this Newsgroup, I’m seeing something like – 80%+ IBD symptoms showing in contributors children. Lots and lots of – recent posts in this group about expectant mothers and new mothers. – – So lets see, mommies and daddies who suffer from any IBD, please a quick – response on if your children are showing or have IBD’s of any type? – – Lets do our own little survey, could be very educational for all…. I’ve had Crohn’s disease for 50 years, most of it undiagnosed as such. No one in my ancestry has any form of IBD, and neither does my daughter.   Charles

Response:

Sue, I don’t think your results are accurate. As far as I’ve read in the 2months I’ve been enjoying this Newsgroup, I’m seeing something like 80%+ IBD symptoms showing in contributors children. Lots and lots of recent posts in this group about expectant mothers and new mothers. So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type? Lets do our own little survey, could be very educational for all…. Grundman

     People on this NG my not represent the majority of IBD sufferers.  You can’t always base your conclusions on what you know.  We may not be a random sample. to reply remove nospam from address

Response:

I have IBD and so does my sister.  We’re pretty sure our father had it, too. Four of my five children show a tendancy toward cramps and diarrhea, three of them enough that it has affected their lifestyles–though one of these seems to have outgrown it.  Two of my children presently take over the counter Imodium daily and have for over a year.  I have discussed this with my doctor and it was his suggestion not to put them through diagnostic tests at this time and to use the Imodium.  The younger of these two was also diagnosed with giarrdhia (sp.?) four years ago and was treated with Flagyl twice at that time.   Kathy

Response:

So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type?

One child 7 years old  NO. But Once in a while I worry that some day she might. — Paul Roue 105 W. 2nd Ave N. Aurora MN 55705 NALC Member Br. 5213 Hoyt Lakes, MN 55750 NRA Life-Member "If you cannot answer a man’s argument, do not panic.  You can always call him names."                                  Oscar wilde

Response:

In article , Grundman says… So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type? Lets do our own little survey, could be very educational for all…. Grundman

Pam and I haven’t noticed any symptoms of IBD in our three children and we have been watching. However, she has a half brother who has CD and a half sister being treated for UC. Neither her full brother or sister have ever had any problems, tho. Bryce

Response:

Ok I get it.  Their making a distinction between that which is wholly genetic  and that which is multifactorial (genetic and environment, etc). Perhaps it is the medical folks that divide it up that way.  Sometimes the hard science people don’t make the same distinctions. The whole spectrum of genetic factors is a little grayer than one or the other. (for example some dominant genes, one in which you only need one copy of the gene, may not be fully penetrant, i.e. the genes effect works 80% of the time instead of 100%).  Then you get into diseases that are affected by numerous genes like heart disease seems to be and it can be a mess trying to sort it all out. I know the best way to get what % is purely genetic and what % is environmental are twin studies.  (compare prevelance in identical, fraternal, and regular siblings).  I don’t know if that’s been done with IBD’s or not.

Response:

Grundman, Here’s what the University of Chicago IBD Clinical Research Center has to say about this as quoted from their Winter 1997 IBD News Digest.  As U.Chicago is one of the top research centers in the US on IBD, I tend to believe their stats. "Q: I have been recently diagnosed with Crohn’s Disease, and my husband and I are planning a family. What is the risk that I will "pass this on" to my children? A: If you have Crohn’s Disease, there is a 5% chance that one of your first-degree relatives (parent, child, sibling) will develop either Ulcerative Colitis (UC) or Crohn’s Disease (CD) in their lifetime. The chance that a first-degree relative of yours w ould develop IBD (either Ulcerative Colitis or Crohn’s Disease) is lower (less than 2%) if you have Ulcerative Colitis. These percentages are slightly higher in Jewish families and in those families where multiple members are already affected by IBD." – Hide quoted text — Show quoted text -Sue, I don’t think your results are accurate. As far as I’ve read in the 2months I’ve been enjoying this Newsgroup, I’m seeing something like 80%+ IBD symptoms showing in contributors children. Lots and lots of recent posts in this group about expectant mothers and new mothers. So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type? Lets do our own little survey, could be very educational for all…. Grundman

Response:

– Hide quoted text — Show quoted text – Crohn’s is considered familial, not hereditary.  One of the reasons for this distinction, I think the major reason, is that a very low percentage of children who have parents with IBD actually develop IBD themselves. What is the distinction?  I haven’t ever heard that one as a geneticist, so I’d like to know what you mean. There are any number of examples in genetics where the children do not exhibit the traits of one or more of their parents.  The most stricking of which is parents which have two people who are little people having a normal sized child.  (and they are little due to a genetic problem that effects the skeleton)

That distinction is in all the literature, so I’m really surprised you haven’t heard of it.  The way CCFA explains it, there is "an absence of typical patterns of distribution in the family", and "the laws of Mendelian inheritance as we know them do not seem to apply to these illnesses".  The reason for this is thought to be that IBD, rather than being strictly genetic in origin, will turn out to be a combination of a genetic tendency(s) and environmental factor(s).  I would gather in your example that Mendelain inheritance rules apply, ie. that the parents have normal genes for the skeleton that get passed on to their children, much in the way that 2 people with AO blood can have a type 0 child?

Response:

I also recently was told that having CD would cost me much more money when getting life insurance.  I was told it was due to the other complications that it causes, like bleeding, affects of meds on organs, etc. I was quite upset with this.  I am being treated as if I am terminal for having an illness that is not terminal.  I was also told that I could go about applying for insurance without disclosing my CD and hope I don’t die within the usual 2 year period after the policy is written.  After two years they don’t investigate a death. Janet – Hide quoted text — Show quoted text – Crohn’s is considered familial, not hereditary.  One of the reasons for this distinction, I think the major reason, is that a very low percentage of children who have parents with IBD actually develop IBD themselves. I’ve recently applied for a new life insurance policy and never thought my having Crohn’s would have an impact on it.  My agent just called me to tell me that they will insure me but at a much higher rate because Crohn’s disease affects my "mortality rate".  They also will not insure my 2 year old son because they say it is hereditary. I have done a large amount of reading in the 9 years since I’ve been diagnosed with Crohn’s and I don’t agree with what they’re saying.  I’ve never read anything about it affecting my mortality and I’ve always heard that they don’t know the cause or if it is indeed hereditary. Does anyone have any similar experiences?  If so, how have you resolved them?  Thanks in advance. Karen in NJ

Response:

I was told that Crohns isn’t "heriditary" also…..I wasn’t convinced when my only child was diagnosed at age 4…… I had already purchased life insurance on him before that so I  still have coverage, but recently I had an opportunity to increase the amount of coverage and I had to update his medical history….Well they sent me my check back and refused to increase his coverage because of his diagnosis. They did let me keep the amount of – Hide quoted text — Show quoted text – Crohn’s is considered familial, not hereditary.  One of the reasons for this distinction, I think the major reason, is that a very low percentage of children who have parents with IBD actually develop IBD themselves. I’ve recently applied for a new life insurance policy and never thought my having Crohn’s would have an impact on it.  My agent just called me to tell me that they will insure me but at a much higher rate because Crohn’s disease affects my "mortality rate".  They also will not insure my 2 year old son because they say it is hereditary. I have done a large amount of reading in the 9 years since I’ve been diagnosed with Crohn’s and I don’t agree with what they’re saying.  I’ve never read anything about it affecting my mortality and I’ve always heard that they don’t know the cause or if it is indeed hereditary. Does anyone have any similar experiences?  If so, how have you resolved them?  Thanks in advance. Karen in NJ

Response:

So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type?

I have Crohn’s.  My children are now 26 and 23 and no symptoms at all. Paul

Response:

Knock on wood – my daughter is as healthy as an ox. Much healthier than I was in my childhood. She’s 8 though and my CD didn’t show up until I was in my 30’s.

Good point, Lyn. My UC crept on me in my mid-twenties. If my son has a somewhat healthier lifestyle than I did at that age (I lived on coffee and cigarettes, heaven help me) he may well escape anyway. Be well, Hadass (posted & e-mailed) — National Research Council of Canada Phone: (204) 984 – 4535 Institute for Biodiagnostics        Fax:   (204) 984 – 7036 435 Ellice Avenue, Winnipeg,MB,R3B 1Y6 http://www.ibd.nrc.ca/~eviatar   Obligatory disclaimer: NRC wouldn’t dream of saying a thing like that.

Response:

Crohn’s is considered familial, not hereditary.  One of the reasons for this distinction, I think the major reason, is that a very low percentage of children who have parents with IBD actually develop

IBD themselves. What is the distinction?  I haven’t ever heard that one as a geneticist, so I’d like to know what you mean. There are any number of examples in genetics where the children do not exhibit the traits of one or more of their parents.  The most stricking of which is parents which have two people who are little people having a normal sized child.  (and they are little due to a genetic problem that effects the skeleton)

Response:

As far as I’ve read in the 2months I’ve been enjoying this Newsgroup, I’m seeing something like 80%+ IBD symptoms showing in contributors children. Lots and lots of recent posts in this group about expectant mothers and new mothers.

So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type?

What you may not realize is that some of the contributors with children do not have IBD – but are reading the group because their children have IBD.  Of the specific contributor’s children I can think of with IBD (mine included), that is the case.  Parents DON’T have IBD – kids DO. So, the fact that 80%+ of the posts about contributor’s kids indicate symptoms only indicates that parents of kids with IBD look for information and support – just like individuals with IBD look for information and support.  It doesn’t necessarily mean that the parents have IBD themselves. Nancy Non-commercial HOTMAIL, JUNO, or MSN users can contact me at above.

Response:

Knock on wood – my daughter is as healthy as an ox. Much healthier than I was in my childhood. She’s 8 though and my CD didn’t show up until I was in my 30’s. — Lyn Wall To reply by e-mail: Remove the "xxx" from the reply address. – Hide quoted text — Show quoted text – Sue, I don’t think your results are accurate. As far as I’ve read in the 2months I’ve been enjoying this Newsgroup, I’m seeing something like 80%+ IBD symptoms showing in contributors children. Lots and lots of recent posts in this group about expectant mothers and new mothers. So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type? Lets do our own little survey, could be very educational for all…. Grundman

Response:

Sue, I don’t think your results are accurate. As far as I’ve read in the 2months I’ve been enjoying this Newsgroup, I’m seeing something like 80%+ IBD symptoms showing in contributors children. Lots and lots of recent posts in this group about expectant mothers and new mothers. So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type? Lets do our own little survey, could be very educational for all…. Grundman

Response:

So lets see, mommies and daddies who suffer from any IBD, please a quick response on if your children are showing or have IBD’s of any type? Lets do our own little survey, could be very educational for all….

No signs yet, thank G-d. BTW nobody else in my family has any kind of IBD. Be well, Hadass (posted & mailed) — National Research Council of Canada Phone: (204) 984 – 4535 Institute for Biodiagnostics        Fax:   (204) 984 – 7036 435 Ellice Avenue, Winnipeg,MB,R3B 1Y6 http://www.ibd.nrc.ca/~eviatar   Obligatory disclaimer: NRC wouldn’t dream of saying a thing like that.

Response:

Crohn’s is considered familial, not hereditary.  One of the reasons for this distinction, I think the major reason, is that a very low percentage of children who have parents with IBD actually develop IBD themselves. – Hide quoted text — Show quoted text -I’ve recently applied for a new life insurance policy and never thought my having Crohn’s would have an impact on it.  My agent just called me to tell me that they will insure me but at a much higher rate because Crohn’s disease affects my "mortality rate".  They also will not insure my 2 year old son because they say it is hereditary. I have done a large amount of reading in the 9 years since I’ve been diagnosed with Crohn’s and I don’t agree with what they’re saying.  I’ve never read anything about it affecting my mortality and I’ve always heard that they don’t know the cause or if it is indeed hereditary. Does anyone have any similar experiences?  If so, how have you resolved them?  Thanks in advance. Karen in NJ

Response:

I’ve recently applied for a new life insurance policy and never thought my having Crohn’s would have an impact on it.  My agent just called me to tell me that they will insure me but at a much higher rate because Crohn’s disease affects my "mortality rate".  They also will not insure my 2 year old son because they say it is hereditary. I have done a large amount of reading in the 9 years since I’ve been diagnosed with Crohn’s and I don’t agree with what they’re saying.  I’ve never read anything about it affecting my mortality and I’ve always heard that they don’t know the cause or if it is indeed hereditary. Does anyone have any similar experiences?  If so, how have you resolved them?  Thanks in advance. Karen in NJ

Response:

Hi there…. I’m a 55 year old male, diagnosed with Crohn’s in 1994, and am on social security disability. Recently, I was able to obtain $100,000 in term insurance (standard rate) through Valley Forge Life Insurance.  My premium is $822 per year (level for 10 years), excejpt for the first year where the premium is $710. Many companies would only insure me if I would pay upwards to 6 times the standard rate, but had no problems with Valley Forge. – Hide quoted text — Show quoted text – I’ve recently applied for a new life insurance policy and never thought my having Crohn’s would have an impact on it.  My agent just called me to tell me that they will insure me but at a much higher rate because Crohn’s disease affects my "mortality rate".  They also will not insure my 2 year old son because they say it is hereditary. I have done a large amount of reading in the 9 years since I’ve been diagnosed with Crohn’s and I don’t agree with what they’re saying.  I’ve never read anything about it affecting my mortality and I’ve always heard that they don’t know the cause or if it is indeed hereditary. Does anyone have any similar experiences?  If so, how have you resolved them?  Thanks in advance. Karen in NJ

Response: