Posts belonging to Category 'Colitis Flare'

I give up

Question:

Hi Sunshyn– I’m sorry for what you’re going through.  :(  I just want to give you one little word of encouragement regarding the colitis flareup…I don’t know much about colitis, but I do know that it’s common to have bowel troubles immediately following abdominal surgery. After my first (and only) lap in 1997, I had a really bad attack about once a week–intense cramping, diarrhea, pain so bad I wanted to throw up.  This happened for four weeks in a row, and I started to get concerned.  So I did a little research, and in that process I discovered that many people have problems like this after abdominal surgeries.  That made me feel so much better!  Sure enough, the regular attacks went away after a few weeks. In addition, I also found out that the colon is controlled by the nervous system.  You probably know that!  But still, it explained a whole lot to me–why my bowel symptoms would act up when I was anxious or upset, or had had a lot of coffee (caffeine stimulating the nervous system).  So it’s likely that your struggles in your relationship are contributing to your bowel troubles.  (Talk about your catch-22.  :P) I’ll keep you in my prayers.  I don’t even know you, but I know that you’re not worthy of the poor treatment you received at the hands of your SO. Take care– ~Jackie

– Hide quoted text — Show quoted text – I was barely recovered from my lap when a colitis flare up (my first very bad one) started getting really awful. The GI I decided to try rescheduled my emergency appointment for tomorrow. I found out that my SO has been in the planning stages of a relationship with a woman whom he knows I distrust. Today, he chose to go with her rather than to try to make it work with me. It turns out that he’d given up on us ever getting our physical relationship back so I guess I really shouldn’t have bothered going through with the lap. — -Sunshyn   "I’m not shy. I’m studying my prey."

Response:

Yeah, what Mary and Carey said….add a what Sherry said to that!!!  

And Kim W I too was with someone for one of my surgeries. He brought me home from the clinic and went to get my pain meds and didn’t come back for 3 days. After grieving for it all I began to live life for me. I met my wonderful DH and he married me knowing full well what the future might hold and sure enough not long after marriage I had another surgery. He has been wonderful. So there is someone for you. It hurts now but in the long run you’ll be better off. Years down the road you’ll look back and say "why did I even give it so much ofmy energy" Keep that energy for you and your healing. If you can swing it talk to a counselor just to help you through the tuff time right now. Kim W – Hide quoted text — Show quoted text –

Response:

Yeah, what Mary and Carey said….add a what Sherry said to that!!! Giving up is not an option!!!  That lap was to make you feel better, not just so he could have sex.  If a physical relationship was all he wanted, then you are much better off without him.   Believe it or not, there are men that don’t that actually care more about their SO’s health than they do sex.  I’ll admit, they are hard to find, but they are out there. Just concentrate on getting yourself healthy first.  Enjoy the time you have alone.  While I love my SO, I really liked living alone also.  Love seems to come when you least expect it in the strangest ways. It will come for you too! Sherry

Response:

Sunshyn, I agree with Carey.  While you might feel devastated right now, what has really happened is that you have an opportunity not only to get yourself better, but an opportunity to get a better, healthy relationship.  A man who would leave you for those reasons, does not really love you, he loved something else.  Consider yourself lucky that you can now search for someone who WILL support you ALL the time no matter what–or be happy on your own. Think about it this way–What would’ve happened to this relationship when the sex got old or you got old?  What would have happened to the relationship then? Love yourself first, work on healing yourself, and gain strength from those who ARE there for you in your hour of need. I will say a prayer for you…… Good Luck, Mary – Hide quoted text — Show quoted text – That lap was for YOU Sunshyne, not him.  What really matters is for you to feel better and to receive proper treatment, and not for his sake.  If he couldn’t wait and support you thru this horrible time, maybe you are better off without him.  I know that might sound harsh and I don’t mean to cause you more pain.  I just know that sometimes it’s better to let someone leave you, because there is someone who will love you endo and all waiting in the wings.  I wish this for you and I hope you feel better soon. Carey — John’s page:  MENDO – Men and Endometriosis: http://www.geocities.com/HotSprings/Spa/8449/ Carey’s Endo Window with Endo Sister’s Survival Kit: http://www.geocities.com/HotSprings/Spa/8509/ I was barely recovered from my lap when a colitis flare up (my first very bad one) started getting really awful. The GI I decided to try rescheduled my emergency appointment for tomorrow. I found out that my SO has been in the planning stages of a relationship with a woman whom he knows I distrust. Today, he chose to go with her rather than to try to make it work with me. It turns out that he’d given up on us ever getting our physical relationship back so I guess I really shouldn’t have bothered going through with the lap. — -Sunshyn   "I’m not shy. I’m studying my prey."

Response:

That lap was for YOU Sunshyne, not him.  What really matters is for you to feel better and to receive proper treatment, and not for his sake.  If he couldn’t wait and support you thru this horrible time, maybe you are better off without him.  I know that might sound harsh and I don’t mean to cause you more pain.  I just know that sometimes it’s better to let someone leave you, because there is someone who will love you endo and all waiting in the wings.  I wish this for you and I hope you feel better soon. Carey — John’s page:  MENDO – Men and Endometriosis: http://www.geocities.com/HotSprings/Spa/8449/ Carey’s Endo Window with Endo Sister’s Survival Kit: http://www.geocities.com/HotSprings/Spa/8509/

– Hide quoted text — Show quoted text – I was barely recovered from my lap when a colitis flare up (my first very bad one) started getting really awful. The GI I decided to try rescheduled my emergency appointment for tomorrow. I found out that my SO has been in the planning stages of a relationship with a woman whom he knows I distrust. Today, he chose to go with her rather than to try to make it work with me. It turns out that he’d given up on us ever getting our physical relationship back so I guess I really shouldn’t have bothered going through with the lap. — -Sunshyn   "I’m not shy. I’m studying my prey."

Response:

I was barely recovered from my lap when a colitis flare up (my first very bad one) started getting really awful. The GI I decided to try rescheduled my emergency appointment for tomorrow. I found out that my SO has been in the planning stages of a relationship with a woman whom he knows I distrust. Today, he chose to go with her rather than to try to make it work with me. It turns out that he’d given up on us ever getting our physical relationship back so I guess I really shouldn’t have bothered going through with the lap.   — -Sunshyn   "I’m not shy. I’m studying my prey."

Response:

We are behind you!  This time is for you, don’t let that good for nothin’ keep you from happiness and health.  This is your time to feel better and to find yourself a knight. Take care and let us know how you’re doing!!! Clare C. lisa simpson:  "what are you reading mr flanders?" ned flanders:  "everything but the opinion page.  i don’t need to be told what

Response:

What’s that saying," if you set it free and it comes back, it’s yours, but if it doesn’t it wasn’t yours in the first place"  I’ve been there and I thank god that he did leave because I found my soul mate afterwards. Remember YOU are the important one in this, not the SO…. Worry about yourself getting better and take life one day at a time. You deserve the best. so why settle for less!!!! Hugs,Celeste

Response:

bleeding gums

Question:

Hi All While playing with a new tug rope today I noticed traces of blood,is this normal bleeding during semi rough play?

Response:

When we give one of our dogs rawhide chews, she would sometimes have traces of blood on the chew.  I always figured it was similar to us flossing and sometimes bleeding from it.  But that is not an educated opinion, just what I thought. -Andy

– Hide quoted text — Show quoted text – Hi All While playing with a new tug rope today I noticed traces of blood,is this normal bleeding during semi rough play?

Response:

<<What meds are you taking? Perhaps the bleeding gums are a side effect? I am on cyclosporine and was told to take very good care of my teeth while onthis med because it can cause hyperplasia (which I believe causes the gums to swell and bleed). I am going to buy an electric toothbrush as my dentist suggested and have my teeth cleaned professionally a little more often. And flossing daily, of course. The problem will disappear once I come off the med. Lisa I just came off of Prednisone but I’m still taking Asacol & Colestid.  My gums are very tender, a little swollen, and bleed very easily. Thanks, Patsy : )

Response:

Is it prednisone?  Prednisone can do that. – Hide quoted text — Show quoted text -Since I’ve been on medication for the colitis,a little over 2 weeks, my gums have really started to bleed alot every time I brush my teeth.  I take good care of my teeth and would hate to start having trouble in this area.  Is this a part of the disease????? Patsy : )

Response:

Since I’ve been on medication for the colitis,a little over 2 weeks, my gums have really started to bleed alot every time I brush my teeth.  I take good care of my teeth and would hate to start having trouble in this area.  Is this a part of the disease????? Patsy : )

Response:

When you are in A Crohns/Colitis flare you lose alot of vitimans and minerals.  Are you taking a multivitiman?  Sounds to me like you are lacking in vitiman C. * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

Response:

<<When you are in A Crohns/Colitis flare you lose alot of vitimans and minerals.  Are you taking a multivitiman?  Sounds to me like you are lacking in vitiman C. I’m taking lots of supplements but not sure if they’re doing any good.  I’ll take extra C to see if this helps.  I’ve always been anemic and this flare is draining me even though I’m taking 2 Ferrosequels(Iron time-release) a day. Thought things were settling down but this afternoon is getting rough. : ( Thanks, Patsy : )

Response:

I had the same problem when I was first on imuran, well for the first 6months anyway.  Now than my colitis seems to be under control they don’t seem to bleed anymore.  Hope this helps a little. Teresa – Hide quoted text — Show quoted text – Since I’ve been on medication for the colitis,a little over 2 weeks, my gums have really started to bleed alot every time I brush my teeth.  I take good care of my teeth and would hate to start having trouble in this area.  Is this a part of the disease????? Patsy : )

Response:

What meds are you taking? Perhaps the bleeding gums are a side effect? I am on cyclosporine and was told to take very good care of my teeth while onthis med because it can cause hyperplasia (which I believe causes the gums to swell and bleed). I am going to buy an electric toothbrush as my dentist suggested and have my teeth cleaned professionally a little more often. And flossing daily, of course. The problem will disappear once I come off the med. Lisa

Response:

How is your Vitamin C intake?  Do you eat citrus foods, tomatoes, etc? You might want to take a vitamin supplement if you consume little of these foods.   Megadoses are not necessary.  Look for something with 100% of the RDA. Patsy

Response:

i eat many citrus fruits and plenty of vitamin C, and my gums have been bleeding more lately too.  i figure it has something to do with being sick, but i don’t know exactly why either. shannon

Response:

<<Does anyone notice that their gums bleed a lot?  I’m starting to wonder if it’s related to my UC. Yes.  My gums bleed a lot, and not only when I brush my teeth.  I’d like to think it’s more than just sloppy oral hygiene on my part.  Don’t medications like azulfidine and asacol thin the blood like aspirin, making one more prone to bleed? Bleeding gums is a form of inflammation, and maybe that’s also a connection.  I’m glad you asked the question.

Response:

Jennifer: If you are taking predisone that is possible the source of your bleeding gums.  This happened to me and I had to get several deep cleanings.  I have been off of predisone for about 1 year now and finally my gums are back to normal.  Be sure to go to the dentist before it gets way out of hand. Doreen

Response:

(StarDZ) writes: If you are taking predisone that is possible the source of your bleeding gums.  This happened to me and I had to get several deep cleanings.  I have been off of predisone for about 1 year now and finally my gums are back to normal.  Be sure to go to the dentist before it gets way out of hand.

It makes them swell like hell.  And bleed. Kathi

Response:

Does anyone notice that their gums bleed a lot?  I’m starting to wonder if it’s related to my UC. Thanks, Jenny Jennifer R. Antony                                 Department of Psychology                                               University of Washington, Box 351525               Seattle, WA 98195-1525                                               (206) 782-6158 (home phone)                                                 (206) 616-3150 (voicemail)

Response:

Hi All! I’m pleased to say I’m been smober since August of 1998 and have been a good influence on many of my smoking friends.  Almost all of my friends have quit smoking since I started the brigade. However, over the course of this time, we have all experienced the same side effect – bleeding gums.  One friend even experiences nose bleeds!  I could understand if this was happening during the first few weeks, but in some cases it’s been going on for periods of many months or years. Does anyone know why this is such a common effect yet I can’t find anything about this anywhere?  My dentist doesn’t even know why it happens…. but he knows it happens. Congratulations to all of you for doing such a good thing for yourselves and thanks for the help!! Jane

Response:

effect – bleeding gums.  One friend even experiences nose bleeds!  I

I can’t offer any information, other than to say that I’ve been experiencing minor nosebleeds for the last week or so, and yes, bleeding gums was a real problem when I had my teeth cleaned at the dentist yesterday! If you do find any information, I for one would appreciate it if you’d post it back here. Lemming — Curiosity *may* have killed Schrodinger’s cat.

Response:

Hi All! I’m pleased to say I’m been smober since August of 1998 and have been a good influence on many of my smoking friends.  Almost all of my friends have quit smoking since I started the brigade.

Cor. I’m slowly working on mine still though….. :) They all smoke less though….. No smoking in my house anymore. However, over the course of this time, we have all experienced the same side effect – bleeding gums.  One friend even experiences nose bleeds!  I could understand if this was happening during the first few weeks, but in some cases it’s been going on for periods of many months or years.

Three months, three weeks, five days, 17 hours, 53 minutes and 56 seconds. 3502 cigarettes not smoked, saving

UC and relaxation techniques

Question:

I have used breathing techniques successfully to get rid of headaches and to slow my bowels when I desperately need a bathroom and can’t get to one at the moment. I have used positive imagery like imagining I am at the beach to decrease stress while waiting for the doctor. I find the more I practise these techniques, the better they help me.  I am definately out of practise with chasing after a toddler.  I don’t have time to destress.-Lee

Response:

Libbydoo, This is probably none of my business, but I am curious as to why you would have run away from home when it sounds like your mom and dad are so very nice.  I am happy that you have good feelings to them, I don’t like to say I envy that, but if there is anything for me to envy, it would be that as I never knew my mother (died at any early age) and my father was 60 at my birth, so he was out of touch and so old (being foreign also) he had to put us in foster homes.. Gail

Response:

 I tell my students that they get extra points if they get so relaxed they drool on their pillows.  ;-) Now I remember I did the drool thing too.  Never achieved that state of relaxation since then.  It was progressive relaxation and before I was dxd with UC I used to do that if I woke up at night with pain.  It worked, now of course I take drugs :o ) Eileen

Response:

I have also tried some relaxation techniques… controled breathing along with some aroma therapy and some relaxing music…   I find that it makes me have a consciencousness about relaxing my body… there are days that I can feel the tension.. the kind you get from watching a scary movie… or being on a rollercoaster… if I do the breathing I can make that feeling go away Karen

Response:

They have relaxation tapes you can buy, or if you want to, make a tape yourself and play it while you are trying to sleep. Worked in psychology dept of university and got involved with a lot of their studies, one was biofeedback relaxation.  We all sat in very comfortable chairs and listened to the person conducting the study do the "relaxation voice".  All of a sudden my jaw went completely slack and I realized that even while resting I tensed up my jaw muscles and needed the relaxation technique to fully relax it. Eileen (sitting here with teeth clenched)

Response:

I’m sure you are right about the stress. I get much worse with one sort of stress( the uncontrolable when it’s out of my hands) but then again another typ of stress ( when I have a lot of stuff going on at the same time) makes my feel much better, almost normal!!! So I try to avoid this negative stress as much as I can, and when I can’t I practise simple relaxations from yoga. But truefully I can’t say if it helps or not because I havn’t been in remission since I got this f..ing disease 2 years ago. But I feel a little better when I do this things Love Mona – Hide quoted text — Show quoted text – Since I’ve been told I have either UC or CD about 6 months ago, I’ve been trying different relaxation/breathing techniques.  Although I can’t say for certain it’s doing any good for the IBD yet, it certainly makes me feel better overall.  MY questions:  Has anyone tried these breathing exercises for IBD and did it do any good?  And, if "they" say it can help UC, why do "they" say it can’t help CD? BTW, I firmly believe that stress brought this on even though everybody says it doesn’t cause IBD. Welcome your experiences/opinions.  Thanks SLO

Response:

Dear Ray, Several years ago I took biofeed for my UC.

Mad and upset !

Question:

What?  You didn’t like my bedpan idea? :-) — DAWN/Bonnie Hadass Eviatar wrote "Bonnie suggested Depends, and I agree. Just put on a diaper and go!" Be well, Hadass

I think diapers would be easier to deal with – just put them in a plastic bag and throw them out! Who wants to wash a bedpan when you are worried about your brother?? (OK, so it isn’t so environmentally sound, but she isn’t likely to go through ten bags of them – there are bathrooms in the hospital, after all!). Be well, Hadass — National Research Council of Canada Phone: (204) 984 – 6618 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:

Vicki, There is a medication called Tincture of Opium that works absolute wonders for me when I am having horrible diarrhea that won’t stop.  It is a narcotic based liquid so you must have a prescription from your doctor to get it.  All you have to do is put 5-10 drops in a small amount of water and it will stop you up all day.  It has been a Godsend for me in the past.  Good luck. Erin

Response:

I love the bed pan idea.  Once on a long bus trip, in which we werent allowed to use the bus potty (long story….drum and bugle corps) I just took along a big plastic container with a lid.  I had to use it once and it sucked trying to balance on that thing in the back of a bus bathroom let me tell you.  And when I emptied it out….boy that was a stink i will never forget.  Anyway,  I guess the point is..when there is a will there is a way.  Good luck.  You are in my prayers for your bro , Julie

Response:

The hospital is an hours drive from my house.. Now you know thats a long way when you have "no" control of bm’s. What do ya’ll do when you have a situation like this?  I am so angry I could just scream ! If anyone has any suggestions on how I could make the trip, please let me know… maybe someone has been in this predicament also and could give me some ideas so I can be down at hospital with my family.

Bonnie suggested Depends, and I agree. Just put on a diaper and go! There are bathrooms everywhere … Be well, Hadass — National Research Council of Canada Phone: (204) 984 – 6618 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:

What?  You didn’t like my bedpan idea? :-) — DAWN/Bonnie Hadass Eviatar wrote "Bonnie suggested Depends, and I agree. Just put on a diaper and go!" Be well, Hadass

Response:

vicki so sorry about your brother…i hope things will be ok.. i can honestly say i know what you are going through with this as for the ibd..i  have to agree with bonnie(lol) about everything i dont think her advice is dumb at all..but excellent.. i too…if i absolutely ..someones life   in danger…would go .. i have done that before..and would again… the only other thing to add to her advice tho IF you really dont feel up to it…maybe when u know he is ok you could then go  and be a help to your family..cos you will be the only one well rested… other than that addition…i 100% agree with her love and you are in my prayers annie

Response:

hi- i am so sorry about your brother-i have been in similiar situations-the best advice i have is to agree with the depends idea-and of course wipes-sometimes this disease can really make things complicated-try to hang in there-i’ll keep your family in my prayers- linda s

Response:

vicki, a cardboard shoe box works well as a disposable bed pan – but don’t forget the wipes.  i also take a change of clothes in my care no matter how far i’m driving.  has come in handy more times than i would like to count. hope your brother is doing better. caryn

Response:

So sorry to hear about your brother… he willl be in my prayers.  I think the depends/bedpan combo sounds great. Tucks now  makes larger portable wipe pads now too, but I think a couple rolls of Charmin and an extra semi-wetted roll in a freezer bag might go a long way. And that change of clothes/sweats. Good luck and hope it all works out ok… Flip

Response:

when we moved down here to florida from michigan we drove ….hubby in one car and me in the other…each of us had a child with us….i wouldnt eat on the trip cause i was so afraid that inbetween rest stops i would have to go as my colitis flare was preety bad at that time…i would eat only when we stopped for the night in a hotel……being with your family is important …..you can do it!!!!!

Response:

i agree with what star fire said….she is right.

Response:

Vicki: First off, I am sending prayers to your brother! Second, call your doctor and see how much Lonox (anti diarrhea) or other meds you can safely take to make the trip. He might even have a suggestion on a drug that will "plug you up" for a couple hours. I know that a couple of people here have gone on trips and taken something that helps. If that isn’t a option – do you know anyone with a mobile home (bathroom included) that would drive you there? I am not kidding on this one — Good luck – I know how you feel – I have missed SO many events because of the drive. Rebecca :-) If you can’t get to the hospital – make SURE someone calls you every hour (or more often) to tell you how he is doing. At least that way you don’t have to worry so much. This c/d is really ticking me off…. My brother had a car crash last night on slick highway and is in Hospital. He had to have surgery late last night, and here I am stuck at home, worrying, I cant go to the hospital and be with my family. The hospital is an hours drive from my house.. Now you know thats a long way when you have "no" control of bm’s.   What do ya’ll do when you have a situation like this?  I am so angry I could just scream ! If anyone has any suggestions on how I could make the trip, please let me know… maybe someone has been in this predicament also and could give me some ideas so I can be down at hospital with my family. Thanks, Vicki/Missouri —

Response:

This c/d is really ticking me off…. My brother had a car crash last night on slick highway and is in Hospital. He had to have surgery late last night, and here I am stuck at home, worrying, I cant go to the hospital and be with my family. The hospital is an hours drive from my house.. Now you know thats a long way when you have "no" control of bm’s.   What do ya’ll do when you have a situation like this?  I am so angry I could just scream ! If anyone has any suggestions on how I could make the trip, please let me know… maybe someone has been in this predicament also and could give me some ideas so I can be down at hospital with my family. Thanks, Vicki/Missouri —

Response:

Vicki, I am so sorry to hear about your brother.  Is he going to be alright?  Can you be with your family by phone? Now this may sound really really stupid, but I just have this kind of mind….If I  REALLY think that I need to do something I don’t let anything stand in the way unless it is way out of my control.  I personally would buy some baby wipes, a couple of 1 gallon bottles of water and a bedpan.  I would drive there sitting on the bedpan and use the water to rinse the bedpan out by the road side and the wipes to..well, wipe.  Please don’t laugh, well you can chuckle, but desperate measures are called for in desperate times.  I really can see myself doing that if I had to.  Well, now everyone knows how weird I am.  But I refuse to take no for an answer if I think there is no way I can do something.  I guess you could also try Depends for the trip.  If you don’t have a car, I don’t think the bedpan would work on a bus. — DAWN/Bonnie PS. If you all think this is really dumb then the other Bonnie wrote this. :-)     This c/d is really ticking me off….     My brother had a car crash last night on slick highway and is     in Hospital. He had to have surgery late last night, and here I am     stuck at home, worrying, I cant go to the hospital and be with my family.     The hospital is an hours drive from my house.. Now you know thats a long way     when you have "no" control of bm’s.     What do ya’ll do when you have a situation like this?  I am so angry I could just scream !     If anyone has any suggestions on how I could make the trip, please let me know… maybe someone has been in this predicament also and could give me some ideas so I can be down at hospital with my family.     Thanks,     Vicki/Missouri     —

Response:

Having the courage to go and do things that aren’t directly next to a rest room is a terrifying prospect. If you are going to be driving in an area that is a business district, then remember each business has at least one rest room! Remember normal people need them too! If you are driving through a woodland take tp with you, and a large heavy doody ziplock bag just in case there are no trees! And have faith you can overcome! Jack Ps. Or trade your car in for a camper with facilities. Ps.Ps. Good luck Vicki wrote, <<This c/d is really ticking me off…. My brother had a car crash last night on slick highway and is in Hospital. He had to have surgery late last night, and here I am stuck at home, worrying, I cant go to the hospital and be with my = family. The hospital is an hours drive from my house.. Now you know thats a long = way when you have "no" control of bm’s. =20 What do ya’ll do when you have a situation like this?  I am so angry I = could just scream ! If anyone has any suggestions on how I could make the trip, please let = me know… maybe someone has been in this predicament also and could = give me some ideas so I can be down at hospital with my family. Thanks, Vicki/Missouri=20

Response:

Joint problems

Question:

I asked my gastroenterologist about 6-mp and pregnancy when I first started the medication.  The official guidelines put out by the drug company recommend "therapeutic abortion" if conception occurs while you’re taking 6-mp.  However, according to my GI, a number of women have gone ahead with 6-mp pregnancies and things have turned out ok.  He said that he certainly wouldn’t regard it as a reason to terminate a wanted pregnancy, and that for me, when I choose to become pregnant, staying on 6-mp is probably the right choice. Good luck — I hope you have a beautiful baby. — Chris — For Paris travel tips, see http://www.geocities.com/Paris/5852/

Response:

the joints that you just described are exactly where is hurts with me. Now is there something that can improve this? Juicing, exercise (well I know that seems to make it worse) or anything? I hope so… Jennie in California

Response:

Terri, I have always been advised that because of my Crohn’s Disease, I should see a Gyn Dr. that specializes with "high risk patients" which would include us ladies with Crohn’s. ( I was looking to get pregnant, but just found out that I can’t..long story).  I used to work in a hospital, and was told by a "High Risk Gyn Dr." himself, that that statement is true. It couldn’t hurt to get a second opinion by such a Dr. Call your local hospital and ask for a Dr. of that calibur that is on staff for a referral. It sure couldn’t hurt!! Maybe your Gastro Dr. might have a Dr. like that to refer you too as well. Take care and I hope that both you and your baby continue to do OK..I’ll say a few prayers. Philnhet

Response:

I had two pregnacies with crohns.  The second was the worse.  I was on lots of drugs I think prednisone was the worse but ya know what they say it saved my sons life.  he was 8 weeks early, he was healthy 4 lbs. The prednisone developed his lungs.  Now Im 6 weeks pregnant again but was on 6mp when I conceived I have stopped the drug.  The effects the drug will have on this baby are soooo contradicting.  MY gyn thinks I should terminate this pregnancy Im soooo confused

My advice would be to get the opinion of a couple of other doctors, and make sure they are docs that have dealt with pregnancies that have occured during treatment with 6mp, maybe oncologists.  They will be able to give you a lot better information than an OB who may never have encountered this.  I’m not surprised your OB is trying to talk you into abortion, as he (or she) probably considers that a way to *erase* the possibility of liability later on in the event your child has a problem.   Jan…  

Response:

I had two pregnacies with crohns.  The second was the worse.  I was on lots of drugs I think prednisone was the worse but ya know what they say it saved my sons life.  he was 8 weeks early, he was healthy 4 lbs. The prednisone developed his lungs.  Now Im 6 weeks pregnant again but was on 6mp when I conceived I have stopped the drug.  The effects the drug will have on this baby are soooo contradicting.  MY gyn thinks I should terminate this pregnancy Im soooo confused

     I would  get double and triple opinions before I did anything as harsh as terminating a pregnancy. It may just be that that doctor hasn’t dealt with this type of situation before. I would see another doctor. Or if you totally trust your doctor then maybe ask him/her to consult with doctors that have knowledge of  pregnancy and Crohns.     If the effects of the drug are going to have a risk, or effect the baby’s health then I would research and find out exactly what the risks are. That way with a little back up information your decision on what to do may be a little easier to make, a hard decision as it is already is. Terri S **Sometimes the only sense we have is a sense of humor.   :) Take out "Nospam" and

Response:

I had two pregnacies with crohns.  The second was the worse.  I was on lots of drugs I think prednisone was the worse but ya know what they say it saved my sons life.  he was 8 weeks early, he was healthy 4 lbs. The prednisone developed his lungs.  Now Im 6 weeks pregnant again but was on 6mp when I conceived I have stopped the drug.  The effects the drug will have on this baby are soooo contradicting.  MY gyn thinks I should terminate this pregnancy Im soooo confused

Response:

I have severe ‘tennis elbow’ in both elbows due to Crohn’s. Physio, trans dermal stimulation and ultrasound worked wonders for me!

I went to my GI today, and my X-rays came back negative, all 13 of them! They took pictures of both shoulders, both knees, and both elbows. So I said,

what

Response:

Joint Problems get most of us and at times we just don’t feel like getting out of bed.  My worst was a period of 6 months of inflamation that had me using drugs and physical therapy.  It eventually became obvious that short of stringing me to the ceiling my legs were not going to heal unless we put casts on both of them.  For six weeks I wore casts so the immune system could do it’s job.  It worked, but what a goose I looked like. Short of that, my favorite treatment uses no drugs and no machines.  It’s just simple deep tissue massage therapy that gets the blood flowing and allows your body to work on itself. Sue in Utah

Response:

- Hide quoted text — Show quoted text – I went to my GI today, and my X-rays came back negative, all 13 of them! They took pictures of both shoulders, both knees, and both elbows. So I said, what does this mean? And my doc jokingly said, "You’re making it up" and that it "May or may not be related to Crohns." And to "take some Naprosyn and see ya in 3 months." Avascular necrosis, a side effect of prednisone, doesn’t always show up on x-rays. I have AVN in my knees and ankles from 6 months of prednisone use. I suggest you see an ortho Dr., not a GI, regarding your joint pain. AVN strikes hips, knees, ankles, shoulders, elbows and wrists. Hips are the most common site. It took an MRI to diagnois my AVN. — Barbara Skoglund (I)

Hi!! That is interesting..since Fibromyalgia hits all those spots…I complained of terrible aching…in my arms, hips, knees, ankles, wrists, shoulders..etc…I couldn’t pinpoint the joint of whole arm…I would tell my internal medicine guy about the aching and he just shrugged and handed me NSAIDS..which did nothing…concentrate on where the pain is…is it in the joints or the whole arm, shoulder, etc?????  please see a specialist!!!!  Love, Mary Ann B

Response:

- Hide quoted text — Show quoted text – I went to my GI today, and my X-rays came back negative, all 13 of them! They took pictures of both shoulders, both knees, and both elbows. So I said, what does this mean? And my doc jokingly said, "You’re making it up" and that it "May or may not be related to Crohns." And to "take some Naprosyn and see ya in 3 months." This sucks! I can’t find anything on the web about this, only mentioned here and there, but nothing much about what it feels like, how is it treated, does it go away, or anything. So my doc is wanting me off the Vicodin, but it is the only thing that helps! I will try his lame Naprosyn just so I can tell him it don’t do anything for me. I tryed it once or twice before, but it did nothing. So now what? I was so inspired to write this morbid poem: (Go ahead, sing it out loud and clap, to "Oh My Darling, Clementine) Suze — enteropathic arthritis is real and painful and sucks horribly, trust me, I know! But it generally does NOT show up in X-rays or bloodwork. Doesn’t mean it hurts any less, damn it! We should be so lucky! Go back to the doc and tell him you need to see a Rheumatologist. Tell him you’re tired of everyone in the world who has IBD being told at one point or the other that they’re "making it up." Tell him that NSAID’s are not the smartest treatment around for people with IBD, but if he wants to use them, he should check out the ones that are generally safer to the GI tract like Relafen and Arthrotec. I could get really rude, sorry, I guess I’m just hypersensitive right now over the "you don’t look sick," "Isn’t that a nervous problem?" "oh, that’s all in your head," type reactions that we too frequently get with this disease. Take care, dear — love ya! steve preferred e-mail address: without the "SPAM," of course! HOME: http://www.digdat.com/~psyche0/index.html ASCC: http://www.geocities.com/HotSprings/Falls/3298/

Hi!!! Please see a rheumatologist and have him check you for fibromyalgia…you are describing the "trigger points"…FM is a very painful syndrome that doens’t show up on x-rays….only a rheumatologist is knowledgable enough to diagnose it…I am living on oxycontin…a narcotic for pain control….it could also be arthritis related to crohns…please see a rheumatology specialist….Good luck!!!  Mary Ann B

Response:

What a cute poem!  You’re very creative.  I know how you’re feeling; latly, it’s been my back that has been acting up.  Of course, all this cold weather makes the joints hurt more too.   Hope you start feeling better! Paty

Response:

- Hide quoted text — Show quoted text – I went to my GI today, and my X-rays came back negative, all 13 of them! They took pictures of both shoulders, both knees, and both elbows. So I said, what does this mean? And my doc jokingly said, "You’re making it up" and that it "May or may not be related to Crohns." And to "take some Naprosyn and see ya in 3 months." This sucks! I can’t find anything on the web about this, only mentioned here and there, but nothing much about what it feels like, how is it treated, does it go away, or anything. So my doc is wanting me off the Vicodin, but it is the only thing that helps! I will try his lame Naprosyn just so I can tell him it don’t do anything for me. I tryed it once or twice before, but it did nothing. So now what? I was so inspired to write this morbid poem: (Go ahead, sing it out loud and clap, to "Oh My Darling, Clementine)

Suze — enteropathic arthritis is real and painful and sucks horribly, trust me, I know! But it generally does NOT show up in X-rays or bloodwork. Doesn’t mean it hurts any less, damn it! We should be so lucky! Go back to the doc and tell him you need to see a Rheumatologist. Tell him you’re tired of everyone in the world who has IBD being told at one point or the other that they’re "making it up." Tell him that NSAID’s are not the smartest treatment around for people with IBD, but if he wants to use them, he should check out the ones that are generally safer to the GI tract like Relafen and Arthrotec. I could get really rude, sorry, I guess I’m just hypersensitive right now over the "you don’t look sick," "Isn’t that a nervous problem?" "oh, that’s all in your head," type reactions that we too frequently get with this disease. Take care, dear — love ya! steve preferred e-mail address: without the "SPAM," of course! HOME: http://www.digdat.com/~psyche0/index.html ASCC: http://www.geocities.com/HotSprings/Falls/3298/

Response:

I went to my GI today, and my X-rays came back negative, all 13 of them! They took pictures of both shoulders, both knees, and both elbows. So I said, what does this mean? And my doc jokingly said, "You’re making it up" and that it "May or may not be related to Crohns." And to "take some Naprosyn and see ya in 3 months."

Avascular necrosis, a side effect of prednisone, doesn’t always show up on x-rays. I have AVN in my knees and ankles from 6 months of prednisone use. I suggest you see an ortho Dr., not a GI, regarding your joint pain. AVN strikes hips, knees, ankles, shoulders, elbows and wrists. Hips are the most common site. It took an MRI to diagnois my AVN. — Barbara Skoglund (I)

Response:

Hi, Just a thought.  Do you still have your gallbladdar???  I had terrible shoulder pain for about a year, and finally my doctor did an ultrasound on my gallbladdar, and sure enough I had to have it removed.  No more shoulder pain.  I know this sounds crazy and I mean crazy.  I thought my doctor had lost his mind, but sure enough it worked.  After the removal of my gallbladdar, no more shoulder pain.   Just a thought…a crazy thought, but none the less I would have it checked out.  What do you have to loose????? Love, Peanut – Hide quoted text — Show quoted text – I went to my GI today, and my X-rays came back negative, all 13 of them! They took pictures of both shoulders, both knees, and both elbows. So I said, what does this mean? And my doc jokingly said, "You’re making it up" and that it "May or may not be related to Crohns." And to "take some Naprosyn and see ya in 3 months." This sucks! I can’t find anything on the web about this, only mentioned here and there, but nothing much about what it feels like, how is it treated, does it go away, or anything. So my doc is wanting me off the Vicodin, but it is the only thing that helps! I will try his lame Naprosyn just so I can tell him it don’t do anything for me. I tryed it once or twice before, but it did nothing. So now what? I was so inspired to write this morbid poem: (Go ahead, sing it out loud and clap, to "Oh My Darling, Clementine) Oh My Shoulder In my arm joint, below my shoulder The aching makes me want to whine Like a baby, a little baby Oh my shoulder, it makes me cry. Oh my shoulder, oh my shoulder Oh my shoulder, much misery Forever hurting, no stop of torture You make me suffer, what agony Then the pain pills, almost all gone And my doctor says I can

Suicide

Question:

When I was 14 or 15 years old I volunteered at the local hospital as a candy striper. One of the duties I was given was to copy and coalate an ostomy manual. This was in the days before auto feed and auto staple functions on copy machines. Anyway, it was a slow project and as an avid reader I read the manual as I went along. I was sickened. How could anyone choose to live like that? Wasn’t death better than this? I was 19 when I was diagnosed with UC. I read all I could and firmly decided that I would kill myself when I got sick enough to need an ostomy. I was 30 when they had to remove my colon. While I was willing to accept a temporary ileostomy, I was adamant that I would kill myself if it was permanant. When my Dr. couldn’t make me a j-pouch he gave me a straight ileoanal anastimosis. He knew how I felt. One would assume from my tale that it was the thought of having an ostomy that made me depressed and suicidal. It wasn’t. I was depressed and lonely first. When I was 13 my dad retired from the Army and we shifted to civililan life. I felt like an alien. I didn’t have any friends, and all my neighbors and classmates grew up together. Newcomers weren’t welcome. At 19 I had just finished my freshman year in college and as usual had a difficult time fitting in. I was very lonely and depressed. At 30 I was unhappy with my job, far from my family, and engaged to a man I didn’t love. My colitis flare was so bad I couldn’t eat or drink and I was actually too sick for them to operate. Everytime I’ve thought of suicide and "blamed" the thought of having an ostomy, I was depressed to begin with. The thoughts of having an ostomy were just a convenient excuse I could use. I believed all the myths and misconceptions I’d heard about ostomy life. " Who could blame me for being depressed and suicidal? What rational person would be willing to wear a stinky, bulging, bag of shit? No one would ever want to be my friend, let alone my lover? Right?" It was only when I got my head together, when I started feeling good about myself, when I got out of the big black pit, when that big black dog stopped nipping at my heels. That was when I was strong enough and frankly mature enough to decide to LIVE life to the fullest and have my ileostomy installed. It was the best health — both mental and physical — decision I ever made. Barbara Skoglund (I) Barbara.A.Skoglun…@tc.umn.edu ———–== Posted via Deja News, The Discussion Network ==———- http://www.dejanews.com/       Search, Read, Discuss, or Start Your Own    

Response:

Barbara:Thanks so much for sharing that.I was diagnosed with crohns at 21,my last year of college,it had been the best time in my life,till I got crohns,things really fell apart.Ive been through 14 major surgeries,12 to repair retal/vaginal fistula,all failed.I had agreed to a temporary illeostomy,but swore I would rather die than have a permanent one.Finally ,my surgeon refused to keep operating,he wanted me to agree to a permanent ostomy,and remove my rectum,and colon,it took along time,but I finally couodnt take being incontinent anymore,so I agreed.Suicide,really couldnt be an option,at anytime as I have a 14 year old daughter,and am a single mom.Im still sick,not well enough to work,but Im still better off with ostomy,im no longer incontinent!!I and i know others who would really like to read your story,would you mind posting this on another board?If so here the addy:www.insidetheweb.com/mbs.cgi/mb69273,its the Ostomy/IBD board.Come visit,we are a very friendly board.

Response:

You wrote….

I have a colostomy that I can’t deal with!

        Keep in mind, when you first had that "original equipment", you didn’t handle IT too well either at first.  You had it around for 2 to 3 years before you had an idea of having it work when YOU wanted it to.  Check with moms and pops of kids in that age range if you don’t have a very good independent memory of back then (who does?).  New equipment deserves the same "break in" time, doesn’t it?           There’s also a lot of "it" out there, whatever "it " is for YOU, and "it"’s being as patient as "it" can be until you get there.  I’d hate to check out without knowing what "it" is. :< :< :< :< :< :< :< :< :< :< :< :< :< :< :< Carol J. J.           Beavercreek, Ohio gnjc…@cfanet.com

Response:

It was my impression when I first read this post that it was written by either the "troll" or his new counterpart.  I dont believe that this "cry for help" is legitimate. Rene – Hide quoted text — Show quoted text -T & D wrote in message <70a6ma$…@bgtnsc01.worldnet.att.net

… Maybe it’s just my suspicious mind but something about this original posting just doesn’t sit quite right with me… David Tony Cassie wrote in message <709nc7$3c…@newnews.global.net.uk… Jeff wrote in message <3628fc24.8497…@news.albany.net… On Fri, 16 Oct 1998 16:57:30 -0500, "world3" <wor…@flash.net wrote: Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!!

Response:

- Hide quoted text — Show quoted text -

On Fri, 16 Oct 1998 16:57:30 -0500, "world3" <wor…@flash.net wrote: Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!! I’d use carbon monoxide.  Just park your car in a small garage and leave it running. Actually, I was dead serious -pun intended.  She asked for advice, which I gave her.  Suicide is sometime a genuine option for people.  I fully support a person’s right to live or die.  She/he didn’t ask for support, she/he ask for a good way to end her his pain.  I gave it to her him.   Who was more supportive?  Me, or you hand holding, sniveling, selfish people who want her to continue living with things she cannot?

Hello Jeff It is hard for me to know if you are serious in your postings, without seeing your face and hearing the inflection in your voice, the bare words of what you say are distasteful to me, and I suspect, to others here as well. There are five newsgroups devoted to suicide and its methods on my server., perhaps your advice should be directed there. Are you an ostomist? were you totally ok with this new situation from the start, did the nurse in hospital just give you a box of pouches and say’ read the instructions, get on with it’ or did she, as I suspect, give you support and advice on the different methods employed by people with ostomies. The ostomy nurse has vast knowledge on the subject. we in this group have experience in living with an ostomy, we are pleased to pass this information on in order to help others. I ask you, have you never felt down about your ostomy, have you never asked anyone for advice, and more to the point , if a member of your family turned to a stranger in despair, would you be pleased for them to get the advice you offer here? I do not think of myself as a ‘hand holding, snivelling, selfish person’. as you so delightfully describe me. I manage my colostomy well and manage to run a business. but there are others who have not come to terms with their new life yet, and need a supportive hand. thats what we are here for. support. Enjoy your health Tony

Response:

That was my first impression, too! David Nick & Rene Marinelli wrote in message … – Hide quoted text — Show quoted text -

It was my impression when I first read this post that it was written by

either

the "troll" or his new counterpart.  I dont believe that this "cry for

help" is

legitimate. Rene T & D wrote in message <70a6ma$…@bgtnsc01.worldnet.att.net… Maybe it’s just my suspicious mind but something about this original

posting

just doesn’t sit quite right with me… David Tony Cassie wrote in message <709nc7$3c…@newnews.global.net.uk… Jeff wrote in message <3628fc24.8497…@news.albany.net… On Fri, 16 Oct 1998 16:57:30 -0500, "world3" <wor…@flash.net wrote: Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!!

Response:

In article <36292b39.3575…@news.albany.net

,

  jroulier@[nospam]albany.net (Jeff) wrote:

Actually, I was dead serious -pun intended.  She asked for advice, which I gave her.  Suicide is sometime a genuine option for people.  I fully support a person’s right to live or die.  She/he didn’t ask for support, she/he ask for a good way to end her his pain.  I gave it to her him.   Who was more supportive?  Me, or you hand holding, sniveling, selfish people who want her to continue living with things she cannot?

You insensitive jerk!  If you knew anything about anything, you would know that most people know how to commit suicide.  It’s those that don’t know how to ask for help.  Usually when someone is asking for help on how to commit suicide, they are crying out for help in dealing with their life, not wanting to take it. We are not "selfish people who want her to continue living with things she cannot."  On the contrary, we are people who have BEEN THERE DONE THAT, and know how to deal with things to get on with life and live a quality life after ostomy.  After all, there are worse things in life to deal with, including insensitive bums.  It’s society that makes it difficult to live with an ostomy because they don’t think we’re "normal."  But on the contrary, we are more "normal" than those without ostomies as we care, we have very sensitive feelings, and we want to help people cope because there is LIFE after ostomy. If you don’t care and don’t have any compassion about you to help people deal and live, then go away.  It’s better to help them cope rather than help them dig a hole deeper.  After all, what is suicide?  The end.  Then what?  What about all the people who care for that person deeply?  What about their lives? Crystal ———–== Posted via Deja News, The Discussion Network ==———- http://www.dejanews.com/       Search, Read, Discuss, or Start Your Own    

Response:

In article <36292b39.3575…@news.albany.net

, jroulier@[nospam]albany.net (Jeff) wrote:

There is no such thing as "Good Advice" when you are telling someone HOW TO DIE! Having staved off that forbidding event not once BUT, THREE times in my life, the only advice I can condone is POSITIVE advice. Death helps noone! Anyone who activily attempts to advise another person on how to ened their life is ALMOST the lowest form of life I can think of! I can understand the view of the potential "victim" in almost each case, however assisting that person is the same as standing on the street and calling to potential jumper to JUMP! If a person makes so bold a statement as to publicly ask for help in killing themselves it is at the same time a plea for someone to talk with them and offer other choices! To help them NOT kill themselves! I would be more than willing to talk with anyone who has this thought on killing themselves, I would happily sit and chat, or even just listen and provide a scratching post to anyone who believes that this is their only choice, There are other choices! I for one would like to help anyone discover those "other choices". Finally to those of you who believe that suicide is a "good" choice" I just have this to say, You haven’t lost a close friend or family member in this manner, IT STINKS! I expect that atleast one or two of you will have some comeback to this post, if you have already posted with your idiotic advice about how wonderful it is to kill yourself. Why not keep your trap shut, you’ve had your say and it’s probably done more than enough damage! I can’t even bring myself to tell you to try out your own advice, for even you don’t deserve that advice! Life is short enough as it is!

Response:

Several friends (three, to be exact–that I know of) have killed themselves because of the pain of cancer, etc. with detailed advice and pills from their doctors. They were NOT new ostomates with a bit of depression–they were opposed to prolonging agony and living in pain or a vegetative state.  One asked me to help while I was in hospital having my ileostomy surgery, in fact. It was always painful for all involved…and not an outgrowth of depression. John

Response:

Dear Jeff,  Have you ever wanted to die or committ suicide?  I have.  In those times you see things only as "black and white", no shades of grey. It’s either live life like ”this" or die and be better off or what ever is your belief when you are dead.  the problem with that is things (except for Truth) are never black and white, there are greys, in other words there are choices that have not been considered because we are too depressed to be creative enough to see them for ourselves, or other people have not opened our eyes to see these options.  It is not a matter of us being selfish in have this person live with something they feel they cannot, it is a matter of showing alternatives so this person can have some hope and a ‘free will’ choice.  I know the depths of depression where the only excape seemed to be death but I was never good at my attempts no matter who cleverly i thought of doing it, they always failed.. If they had not failed I would be dead and not had the opportunity to help take care of my grandmother when she was dying, I would not be here to be supportive of my friends, to help them with their children or their just needing someone to talk to, I would not be here to sponser a child in the Dominican Republic through Compassion international so that she can have food and an education, and all the other things I do and am for others,  I would not have the Joy that I live with now if I had died.  The sun eventually shines!  There is help and there are people, even strangers who are willing to help and to love another enough not to give them what they ‘think’ they need but rather what they are really asking for, their heart’s desire to loved unconditionally and to have their needs met.  Bonnie – Hide quoted text — Show quoted text -

Actually, I was dead serious -pun intended.  She asked for advice, which I gave her.  Suicide is sometime a genuine option for people.  I fully support a person’s right to live or die.  She/he didn’t ask for support, she/he ask for a good way to end her his pain.  I gave it to her him.   Who was more supportive?  Me, or you hand holding, sniveling, selfish people who want her to continue living with things she cannot?

Response:

On Sat, 17 Oct 1998 10:16:19 +0100, "Tony Cassie" – Hide quoted text — Show quoted text -<cas…@globalnet.co.uk

wrote: Jeff wrote in message <3628fc24.8497…@news.albany.net… On Fri, 16 Oct 1998 16:57:30 -0500, "world3" <wor…@flash.net wrote: Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!! I’d use carbon monoxide.  Just park your car in a small garage and leave it running.  Pills are too dangerous.  They may not be complete, and you could end up in a coma or worse.  A shotgun in the mouth is definitely effective, but too messy.  You have to think of those that are going to find you.  If you don’t like any of those, get the book "Final Exit.  It has many good ways to do it.  Good luck.  I’d ask you how you made out, but if you’re sucessful, I’ll never know for sure. —————– Well Jeff, I hope you feel pleased with your offering regarding World3’s cry for help. This is a newsgroup for ostomy support, and thats what World3 asked for, support,  not smart arse quips and black humour. Perhaps you were trying reverse psychology on World3, perhaps not. Your words came across as hard, cruel and misplaced. and may even have caused World3 to feel more alienated and desperate. Let us assume that all postings here are genuine and give them kind and constructive support. Tony

Actually, I was dead serious -pun intended.  She asked for advice, which I gave her.  Suicide is sometime a genuine option for people.  I fully support a person’s right to live or die.  She/he didn’t ask for support, she/he ask for a good way to end her his pain.  I gave it to her him.   Who was more supportive?  Me, or you hand holding, sniveling, selfish people who want her to continue living with things she cannot?

Response:

To World3: Tell us some about yourself.  How long have you had your ostomy?  What kind of problems are you having with it?

Response:

Suspicions are not good to act upon in cases like this because they could be wrong.  Better to err with what is safe.  I’d rather feel like a fool instead of being a fool.  (I’m not calling you a fool, please don’t be offended) – Hide quoted text — Show quoted text -T & D wrote in message <70a6ma$…@bgtnsc01.worldnet.att.net

… Maybe it’s just my suspicious mind but something about this original

posting

just doesn’t sit quite right with me… David Tony Cassie wrote in message <709nc7$3c…@newnews.global.net.uk… Jeff wrote in message <3628fc24.8497…@news.albany.net… On Fri, 16 Oct 1998 16:57:30 -0500, "world3" <wor…@flash.net wrote: Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!! I’d use carbon monoxide.  Just park your car in a small garage and leave it running.  Pills are too dangerous.  They may not be complete, and you could end up in a coma or worse.  A shotgun in the mouth is definitely effective, but too messy.  You have to think of those that are going to find you.  If you don’t like any of those, get the book "Final Exit.  It has many good ways to do it.  Good luck.  I’d ask you how you made out, but if you’re sucessful, I’ll never know for sure. —————– Well Jeff, I hope you feel pleased with your offering regarding World3’s cry for help. This is a newsgroup for ostomy support, and thats what World3 asked for, support,  not smart arse quips and black humour. Perhaps you were trying reverse psychology on World3, perhaps not. Your words came across as hard, cruel and misplaced. and may even have caused World3 to feel more alienated and desperate. Let us assume that all postings here are genuine and give them kind and constructive support. Tony

Response:

On Fri, 16 Oct 1998 16:57:30 -0500, "world3" <wor…@flash.net

wrote: Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!!

I’d use carbon monoxide.  Just park your car in a small garage and leave it running.  Pills are too dangerous.  They may not be complete, and you could end up in a coma or worse.  A shotgun in the mouth is definitely effective, but too messy.  You have to think of those that are going to find you.  If you don’t like any of those, get the book "Final Exit.  It has many good ways to do it.  Good luck.  I’d ask you how you made out, but if you’re sucessful, I’ll never know for sure.

Response:

Now why would you want to go and take your life over your colostomy?  You should just be thankful that you are alive. There are so many people in this world that are a whole lot worse  off, that they would probably love to trade places with you and take your colostomy, to left you suffer with what they are dealing with.  Just be thankful to be alive.  I have an illeostomy and only have 20 inches of small bowel left.  I have to infuse TPN for the rest of my life, and I am now fighting the possibility of having Thyroid cancer. But I sure am not going to give up on myself.  When I got my illeostomy it gave me my life back.  Having Crohn’s disease is not a pleasant experience.  I wish it was just a colostomy to deal with.  Be happy go say some prayers and ask for some guidance.  I am sorry I am not putting you down but you need to seek out some professional help. Diana

Response:

I really hope this person is alright. Suicide is final/serious! It does not mean someone is a loser. Depression is  a medical condition. How can anyone make fun/be mean to  this person??? We who have IBD should be more kind. IBD is a disease too. I had to deal with depression after My ostomy surgery. You just have to hold on tight to life..  

Response:

Jeff wrote in message <3628fc24.8497…@news.albany.net

… On Fri, 16 Oct 1998 16:57:30 -0500, "world3" <wor…@flash.net wrote: Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!! I’d use carbon monoxide.  Just park your car in a small garage and leave it running.  Pills are too dangerous.  They may not be complete, and you could end up in a coma or worse.  A shotgun in the mouth is definitely effective, but too messy.  You have to think of those that are going to find you.  If you don’t like any of those, get the book "Final Exit.  It has many good ways to do it.  Good luck.  I’d ask you how you made out, but if you’re sucessful, I’ll never know for sure.

—————– Well Jeff, I hope you feel pleased with your offering regarding World3’s cry for help. This is a newsgroup for ostomy support, and thats what World3 asked for, support,  not smart arse quips and black humour. Perhaps you were trying reverse psychology on World3, perhaps not. Your words came across as hard, cruel and misplaced. and may even have caused World3 to feel more alienated and desperate. Let us assume that all postings here are genuine and give them kind and constructive support. Tony

Response:

Maybe it’s just my suspicious mind but something about this original posting just doesn’t sit quite right with me… David – Hide quoted text — Show quoted text -Tony Cassie wrote in message <709nc7$3c…@newnews.global.net.uk

… Jeff wrote in message <3628fc24.8497…@news.albany.net… On Fri, 16 Oct 1998 16:57:30 -0500, "world3" <wor…@flash.net wrote: Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!! I’d use carbon monoxide.  Just park your car in a small garage and leave it running.  Pills are too dangerous.  They may not be complete, and you could end up in a coma or worse.  A shotgun in the mouth is definitely effective, but too messy.  You have to think of those that are going to find you.  If you don’t like any of those, get the book "Final Exit.  It has many good ways to do it.  Good luck.  I’d ask you how you made out, but if you’re sucessful, I’ll never know for sure. —————– Well Jeff, I hope you feel pleased with your offering regarding World3’s

cry

for help. This is a newsgroup for ostomy support, and thats what World3 asked for, support,  not smart arse quips and black humour. Perhaps you were trying reverse psychology on World3, perhaps not. Your words came across as hard, cruel and misplaced. and may even have caused World3 to feel more alienated and desperate. Let us assume that all postings here are genuine and give them kind and constructive support. Tony

Response:

World3 wrote:

I have a colostomy that I can’t deal with!

Just what exactly can’t you deal with? Your colostomy can’t be that big of a deal as to end your life. How long have you had it? If you haven’t had it long, give it a chance before you pass judgement. The fact that you posted here indicates you would like some help with your ostomy and not suicide. I am sure there are thousands of Web sites detailing a variety of was to snuff yourself. You have come to the right place for support. Mike http://www.geocities.com/Heartland/Pointe/2887/

Response:

I am serious—I do not want to live like this!!!!

Just what is bothering you?  There about a million people in the U,S, with holes in their bellys.  Most of us live as productive members of society. What makes you think you can’t? In this newsgroup you can get help and guidance  - we’ve been there and done it; even been through the stage you appear to be experiencing now.

Response:

On Fri, 16 Oct 1998 16:57:30 -0500, "world3" <wor…@flash.net

wrote: Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!!

********* Sounds like you were a loser from the start. An ostomy it not the end of your life, it’s a new begining, deal with it like we all do. DS.

Response:

Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!!

Response:

Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!!

Quiter!!!!!!! Earl (U)

Response:

Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!!

Yes I know a Great way to go!!   Go to your Doctors and tell him you are suicidal over the ostomy!!  I am sure he will get you the help you need! Paula

Response:

Quiter!!!!!!! Earl (U)

Earl, I think some of have been at this point and start to lose patience.  It is hard to believe that it gets better until it does.  Trust me World3, it always does get better, hang in there!! Paula

Response:

Earl, check your E-mail for a message from me.  feel free to E-Mail me. Bonnie – Hide quoted text — Show quoted text -Earl wrote in message …

Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!! Quiter!!!!!!! Earl (U)

Response:

World3, can I ask if your colostomy is recent, or have you had it a long time? I’ve had so many surgeries I’m afraid to ask what more can happen. Seems like a lot of ostomates got better after getting a bag so they have a quality of life some of the rest of us don’t have. Can you write back about it?  Post a message again or email me, or anyone on the list?  Maybe someone some where knows about your exact situation from their own experience. – Hide quoted text — Show quoted text -world3 wrote in message <708fha$2d…@excalibur.flash.net

… Anyone know of a good way to go? I have a colostomy that I can’t deal with! Any suggestions? I am serious—I do not want to live like this!!!!

Response:

Panic Attacks/ Anxiety anyone?

Question:

kevin,   what is ocd? i was just thinking that maybe those of us who are a little high strung or get stressed easily  it somehow weakens our natural defenses inside our bodies and leaves us open for a number of things including digestive problems. i don’t know i’m just thinking too much i guess. from, Michelle

Response:

I was diagnosed with OCD/Anxiety attacks and Severe Mood swings when I was 24…  I have been takin Anafranil ever since.. I dont have any more symptoms… But now.. Years later.. I get this Crohns crap…  I dont think there is any connection… Butt… Kevin In Dallas.

Response:

Wow! I just went thru an episode with panic attacks and wondered if there was any connection to my CD.  My doctors haven’t said yes or no to the connection, but reading your post and the threads makes me think that there is something to it. Briefly, I have had CD for about 22 years with some remissions mixed in from time to time.  About 1 year ago I changed jobs and the stress started to build and so did my flare ups.  Four months ago, I ended up in the ER very dizzy and ready to pass out.  While going thru and waiting in the ER for the tests to come back, I was very anxious, couldn’t lay still and my heart was pounding.  I mentioned this to the nurse and she just fluffed it off.  The tests came back and they determined that I had dehydrated myself (bad diahrea), and admitted me into the hospital.  For the next 48 hours, I was given IV’s consisting of a lot of fluids, antibiotics and some drugs to relax me.  When I was discharged, I didn’t feel all that good but went home anyways.   I immediately went back to work which was a big mistake.  I wasn’t feeling good, the work load was huge and I was scared that I was losing my ability to cope.  Then it hit.  I received an flaming e-mail from my boss that pushed me over the edge.   Since receiving that e-mail, I had about 4 panic attacks with the same symptoms that you described.  I went back to the doctor and she prescribed Zoloft for the panic attacks and set me up with a therapist. Since then, I’ve been well controlled after taking 8 weeks off from work (with no pay).  I have returned to work but I still have moments when I feel the panic building, but with the Zoloft and the training I received from the therapist, I’m able to relax and let it pass.  It looks like I will be on the Zoloft for at least a year or more. To me, the panic attacks started when I allowed myself to dehydrate and become very weak both physically and mentally.  It’s a "catch 22". Stress brings on the CD, the CD brings on the panic, and the panic brings on more stress.  I suggest strongly that you get the panic attacks under control quickly before it becomes a part of your life, and that should help your CD symptoms as well. Good Luck, Glenn – Hide quoted text — Show quoted text – My mother called today. im sure you guys know how that went. although she means well she still is convinced that i have UC because i worry too much.  Well, i told her " you would worry too if you were bleeding from your butt."  shes probably half right , though, accept i could never figure out what causes what. Sometimes i have these anxiety attacks when i feel like i can’t breathe and my heart races. & then of course i gotta poop. but i don’t know if my whole poop problem is caused by stress put upon my body from these panic episodes. Does this sound familiar to anyone out there  ???? Michelle

Response:

I too get panic attacks ….. and it can be out of the clear blue sky.  There are times I wake up in the middle of the night with them and can’t get back to sleep.   I don’t have to run to the potty with them though. Sometimes i have these anxiety attacks when i feel like i can’t breathe and my heart races. & then of course i gotta poop. but i don’t know if my whole poop problem is caused by stress put upon my body from these panic episodes. Does this sound familiar to anyone out there  ???? Michelle

Cheers & Hugs, Robin http://www.geocities.com/Heartland/Estates/7945/ You shouldn’t have to pay for you love with your bones and your flesh, you know hell is for children.                                                   -Pat Benatar

Response:

My mother called today. im sure you guys know how that went. although she means well she still is convinced that i have UC because i worry too much.  Well, i told her " you would worry too if you were bleeding from your butt."  shes probably half right , though, accept i could never figure out what causes what. Sometimes i have these anxiety attacks when i feel like i can’t breathe and my heart races. & then of course i gotta poop. but i don’t know if my whole poop problem is caused by stress put upon my body from these panic episodes. Does this sound familiar to anyone out there  ???? Michelle

Yes, it sounds a bit familiar.  My "interpretation" of the event might be different.  I think the feelings of panic are related to being sick. When you never know when you are suddenly going to have to go to the bathroom (and you suspect it is going to be painful) and that you might not make it to the bathroom in time (with all the embarassment that causes) and that you are losing a lot of blood, I think maybe it is a physical response to a real stressor rather than an inability to handle "stress" well.  I teach teenagers (30-40 at a time) and I don’t have a problem handling the stress that involves.  So, to sum it up, I don’t think that stress leads to colitis flare ups — I think colitis flare ups naturally causes stress (as would other serious illnesses). Kind of long-winded but I have also experienced being told similar things as to what you describe your mother saying.

Response:

This is very familiar to me.  I have been in the hospital 4 times due to flare-ups.  3 out of the 4 were during midterms and finals.  I don’t think it is a coincidence.  While I don’t believe that stress caused my uc, I do think that when I worry and stress it makes the symptoms worse.  When I am stressed out I also am not taking care of myself in the best of ways – not eating right, etc.  All of this I think contributes to making my condition worse.  I could be wrong – who knows for sure.  Just wanted you to know my experience. Nicole My mother called today. im sure you guys know how that went. although she means well she still is convinced that i have UC because i worry too much.  Well, i told her " you would worry too if you were bleeding from your butt."  shes probably half right , though, accept i could never figure out what causes what. Sometimes i have these anxiety attacks when i feel like i can’t breathe and my heart races. & then of course i gotta poop. but i don’t know if my whole poop problem is caused by stress put upon my body from these panic episodes. Does this sound familiar to anyone out there  ???? Michelle

– Jimmy Fingers, free book "Finger Magic" at http://members.tripod.com/~imagique/magic.html My mother called today. im sure you guys know how that went. although she means well she still is convinced that i have UC because i worry too much.  Well, i told her " you would worry too if you were bleeding from your butt."  shes probably half right , though, accept i could never figure out what causes what. Sometimes i have these anxiety attacks when i feel like i can’t breathe and my heart races. & then of course i gotta poop. but i don’t know if my whole poop problem is caused by stress put upon my body from these panic episodes. Does this sound familiar to anyone out there  ???? Michelle

– Jimmy Fingers, free book "Finger Magic" at http://members.tripod.com/~imagique/magic.html

Response:

My mother called today. im sure you guys know how that went. although she means well she still is convinced that i have UC because i worry too much.  Well, i told her " you would worry too if you were bleeding from your butt."  shes probably half right , though, accept i could never figure out what causes what. Sometimes i have these anxiety attacks when i feel like i can’t breathe and my heart races. & then of course i gotta poop. but i don’t know if my whole poop problem is caused by stress put upon my body from these panic episodes. Does this sound familiar to anyone out there  ???? Michelle

Interestingly enough, I do not have any bowel symptoms during a panic attack — unless my bowel is already acting up. I know that physical stress and anxiety can make my symptoms worse — note that I said, "can." They don’t always act the same way. But I think the biggest problem that you have with panic attacks and anxiety is in quality of life. Let’s face it, it’s no fun living in fear — and the severity of your panic attacks sounds pretty bad, too. If you’re not on any medication for it, I recommend you talk with your doctor. There are a number of good anti-anxiety agents available now including Xanax and Buspar (this latter one is not even slightly addictive, but it is also less effective). I can’t promise you that getting the panic attacks under control will help the UC symptoms, but it will make you feel better overall. steve

Response:

My mother called today. im sure you guys know how that went. although she means well she still is convinced that i have UC because i worry too much.  Well, i told her " you would worry too if you were bleeding from your butt."  shes probably half right , though, accept i could never figure out what causes what. Sometimes i have these anxiety attacks when i feel like i can’t breathe and my heart races. & then of course i gotta poop. but i don’t know if my whole poop problem is caused by stress put upon my body from these panic episodes. Does this sound familiar to anyone out there  ???? Michelle

Response:

terrible gas cramps

Question:

I’ve had those gas pains you describe. I found that drinking clear fluids, as plain as bottled water and making the diet as simple as possible helped. I noticed that some of the foods I eat tended to make more of the gas. For me the fluids keep things going through and not staying put and building up gas. Perhaps being more aware of what foods are causing you more gas would help. Bill

Response:

I’ve had those gas pains you describe. I found that drinking clear fluids, as plain as bottled water and making the diet as simple as possible helped. I noticed that some of the foods I eat tended to make more of the gas. For me the fluids keep things going through and not staying put and building up gas. Perhaps being more aware of what foods are causing you more gas would help. Bill

I couldn’t see the first part of this thread as it had expired, but I’ve experienced similar symptoms. And it usually is food related. A lot of foods tend to create more gas than others. I’ve tried to remember what I’ve eaten right before I get these double-me-over-in-pain cramps, and avoid or moderate them in the future. Dairy products are definitely a big one. All are usually followed by a mad dash (as mad a one as you can make in excruciating pain) to the bathroom. Just watch what you eat and remember it even if you have to write it down. Ed

Response:

Try as others have said to keep track of what you eat and how you feel. I find that phazyme (an anti-gas pill) can be helpful.  These are over the counter pills, if not that brand I am sure you will find something similar. Try a day with just liquids, juice, water and clear or non-chunky soups (tomato etc).  This might help get things back to a comfortable level while not depriving you of too much nutrients. You might also try a stool softener.  Those can be tricky, increasing your water intake would be the first way to try.  Try to get out and walk for a bit Even if it is in the yard or the apartment block.  The exercise helps get things moving properly. Sandra Gordon University of Saskatchewan

Response:

Yes, I have had the same symptoms, but only when my CD is really bad. My poop also looks like fish food, or small curly 1/2 things, eww. I just had surgery and they resected it  and I do not have much pain now, but my poop is still funny looking and I have lots of gas and bloating. Hope this helps! :) — HappyJoy http://www.geocities.com/SiliconValley/5168

I was wondering if anyone else with Crohns experiences terrible pain in their gut that feels like pressure constantly? Is there anything to take for it? I am on 60mg of Prednisone since I just left the hospital with my first major flare, I have only had this disease a year. I don’t know if the Prednisone is doing it or maybe the fact that I am eating again and not used to it. Any suggestions on what to try would be really appreciated. I think I may have to undergo another colonoscopy and ct scan because they think there is something causing the pain. I am still very sore and having 25 bms a day. Nothing much ever comes out,. kinda looks like fish food, sorry for the graphics. Please help if you have has any experience with this. I think I may have a narrowing or maybe an obstruction because when I do actually have a bm with any substance…it feels like I could easily pass out from the pain.  I have never felt this awful and would like to thank everyone in advance.  I read the posts every night and fond them very helpful. What a great group!! Thanks! Pam (29yrs old, 1 1/2  year CD sufferer)

Response:

Pam – Thanks for the description of "fish food". I know EXACTLY what you are talking about and I never knew how to describe it to my doctor. Fish food is perfect!!! You made my day.  Hope you are feeling better and take it easy. You will feel better! Rebecca – Hide quoted text — Show quoted text – the pain. I am still very sore and having 25 bms a day. Nothing much ever comes out,. kinda looks like fish food, sorry for the graphics. Please help if you have has any experience with this. I think I may have a narrowing or maybe an

Response:

I find icing my stomach helps relieve the pain and helps pass the gas. I am suffering through a Ulcerative Colitis flare up right now. – Hide quoted text — Show quoted text – I was wondering if anyone else with Crohns experiences terrible pain in their gut that feels like pressure constantly? Is there anything to take for it? I am on 60mg of Prednisone since I just left the hospital with my first major flare, I have only had this disease a year. I don’t know if the Prednisone is doing it or maybe the fact that I am eating again and not used to it. Any suggestions on what to try would be really appreciated. I think I may have to undergo another colonoscopy and ct scan because they think there is something causing the pain. I am still very sore and having 25 bms a day. Nothing much ever comes out,. kinda looks like fish food, sorry for the graphics. Please help if you have has any experience with this. I think I may have a narrowing or maybe an obstruction because when I do actually have a bm with any substance…it feels like I could easily pass out from the pain.  I have never felt this awful and would like to thank everyone in advance.  I read the posts every night and fond them very helpful. What a great group!! Thanks! Pam (29yrs old, 1 1/2  year CD sufferer)

Response:

I was wondering if anyone else with Crohns experiences terrible pain in their gut that feels like pressure constantly? Is there anything to take for it? I am on 60mg of Prednisone since I just left the hospital with my first major flare, I have only had this disease a year. I don’t know if the Prednisone is doing it or maybe the fact that I am eating again and not used to it. Any suggestions on what to try would be really appreciated. I think I may have to undergo another colonoscopy and ct scan because they think there is something causing the pain. I am still very sore and having 25 bms a day. Nothing much ever comes out,. kinda looks like fish food, sorry for the graphics. Please help if you have has any experience with this. I think I may have a narrowing or maybe an obstruction because when I do actually have a bm with any substance…it feels like I could easily pass out from the pain.  I have never felt this awful and would like to thank everyone in advance.  I read the posts every night and fond them very helpful. What a great group!! Thanks! Pam (29yrs old, 1 1/2  year CD sufferer)

Response:

It’s probably just a gas build up, but also I notice your on a heavy dose of Prednislone, and that gives to a bloated looking stomach, sort of called Steriods fluids" and does cause pain under rib cage, I get it know even being off Steriods for two months. Hope this helps. Phil – Hide quoted text — Show quoted text – I was wondering if anyone else with Crohns experiences terrible pain in their gut that feels like pressure constantly? Is there anything to take for it? I am on 60mg of Prednisone since I just left the hospital with my first major flare, I have only had this disease a year. I don’t know if the Prednisone is doing it or maybe the fact that I am eating again and not used to it. Any suggestions on what to try would be really appreciated. I think I may have to undergo another colonoscopy and ct scan because they think there is something causing the pain. I am still very sore and having 25 bms a day. Nothing much ever comes out,. kinda looks like fish food, sorry for the graphics. Please help if you have has any experience with this. I think I may have a narrowing or maybe an obstruction because when I do actually have a bm with any substance…it feels like I could easily pass out from the pain.  I have never felt this awful and would like to thank everyone in advance.  I read the posts every night and fond them very helpful. What a great group!! Thanks! Pam (29yrs old, 1 1/2  year CD sufferer)

Response:

I WON'T TAKE PRED NO MORE NO MORE

Question:

Kim – Good Job!!  I know how hard it can be to stick to a drug that makes you "sick".  I am one that has been hit hard by prednisone side effects too.  I had to stick with it till we found something for my asthma that works better.  I am now experiencing adrenal insuffiency as I taper slowly off the medication but every 2 weeks I get to drop 1/2mg and I know some day I will be off it completely (unless the colitis flares again : () In the meantime, for anyone experiencing psych effects from steroid use, there is hope.  I found a doctor who felt that psych problems caused by steroids should be treated.  I am currently on Wellbutrin and Depakote and feel GREAT!! Another thing to keep in mind, trycyclic antidepressants like Elavil (amytriptoline) can make prednisone induced psych problems WORSE – not better. Speak to your doctor about this if it is a concern. Been missing this board!! Konnie

Response:

O yes, I also have moodswings! And hate it, also the extra weight! Now I am switching from pred. to budesonide. It takes 4 weeks. One day I take pred. and the other I take budesonide. It is incredicle but: the days I take Budesonide I do not suffer from moodswings at all! Good luck, Jolanda – Hide quoted text — Show quoted text – I’ve been reading posts here for at least a couple weeks, and I’m hearing so much about Prednisone and mood swings.  Does everyone have them while taking the drug? I always feel energized and focused on prednisone, at least initially. It’s a postive feeling, not a negative one. I’d take prednisone all the time for that feeling, if it weren’t for the long-term side effects. —

Response:

Isaid no to 6mp one week before laber day 1997.Iwas diagnosed with crohns in1995 and took 6mp. 6mp made me feel like Iwas stoned all the time.After my condition went into remission I became astrict vegan.You should read Presciption for NutritionalHealing by Balch M.D. andBalchC.N.C.,along with books by Andrew weil M.D Diet and supliments are everything to yuor health and well being.

VEGANISM IS THE ONLY WAY TO STAY MED FREE.

Response:

I too can take pred without mood swings but hate taking it.  If tou want to try this, before there was pred (yes, it’s fairly recent), they encouraged the natural  production of extra cortisone by inducing fevers.  Without it I couldn’t walk or go to work during a flare, but good luck.

Response:

I found that taking an anti-depressant with steroid helped tremendously.  There was no weight gain, and I did not experience any of the severe mood swings associated with Prednisone.  I did stop taking the Azulfidine, which resulted in a flair-up that caused me to be on the steroid for an entire year to no avail.  I ended up losing my colon anyway, but have not found that my other organs were adversely affected.

Response:

After reading Doc Weil’s "Spontanious Healing", I decided to give Traditional Chinese Medecine a shot.  This involved herbs, medical message(accupressure), vitamin supplements and what seemed at the time to be some rather drastic dietary changes.  I had been on pred and cortenemas for about a year, with only slight control of symptoms.  After3 weeks of TCM I was off steroids, bleeding had stopped and my other symptoms had begun to improve.  I have been in remission for 9 months now.  I still go for message treatments every 2 weeks. I practice meditation and relaxation and have permantly altered my diet to a much healthier one.  I feel better than I have in years.  The best advice I would give anyone is to read Dr.Weil’s books, and realize that MDs don’t know much about our disease. – Hide quoted text — Show quoted text -My question is: is there anyone else out there who just said no to these drugs, and how is it going?  Any alternative therapies?  Natural remedies?  

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– Hide quoted text — Show quoted text -Hello all.  I am so happy to find this site.  I have a very procedure and pill oriented GI, who tells me UC is not stress related, it doesn’t matter what I eat, and my quitting smoking four months before my diagnosis has nothing to do with my UC.  He just wants to scope me and give me pred.  Of course, pred makes me absolutely nutty.  My only thoughts on pred are "Who cares, what does it matter, and what can I do about it anyway?"  I’m sure I don’t have to tell you all about those dirty little steroids.  So, I won’t take them.  No more. Nope. Had it.  Since my doctor only tells me to take them, I’ve quit talking to my doctor.  I find the symptoms wax and wane without pred.  Sometimes its BMs as usual, sometimes its hamburger meet and a pink to red toilet bowl.  My question is: is there anyone else out there who just said no to these drugs, and how is it going?  Any alternative therapies?  Natural remedies?  Aside from running to the bathroom a lot more, am I really doing more damage to myself by NOT taking the pred than I would to my essential organs if I did take it?  Thanks for all your thoughts on this.

Hi there, I just thought I would give you my 2 cents worth. I also have CD, and have had it for over 15 years. In the beginning, I refused to take the pred. as it seemed to make me nauseated, and generally just feeling awful. I tried to take it, but I mostly just didn’t take it. I seemed to be doing fine with out it and the cd waxed and waned for a few years. All the tests showed that I had severe cd that involved all areas of my colon and small intestines. Nothing I have tried in the way of medicine worked, and all the GI would prescribe would be the steroids. And as much as I hated the drug, it was the only thing that would work. After all these years, and many problems with the cd and the side effects, I have resolved that I have to take this frickin drug for the rest of my life. This means that I also have to put up with the side effects, such as arthritis, osteoporosis, gaining 10 lbs a month, moon face, bruising easily etc etc……. But after perforating, and going through 7 resections, ileostomy, fistulas etc, I’m very glad that I’m still here, since there were 3 times that my children were told that I wouldn’t survive the night. I hate this disease, I hate the prednisone, but I don’t have a choice. I can’t seem to be able to wean off the drug, and the side effects suck. But I don’t have a choice, and I don’t want to die, so I now faithfully take all the meds that are prescribed and try to deal with the side effects, day by day. I have tried all kinds of drugs, and nothing seems to work, right now I’m giving myself an injection weekly of a potent immunosuppressive in hopes of reducing the prednisone as the side effects are really getting to me. So IMHO, please do what the dr says. It really is a marvelous drug, even though the side effects are the pits. I find myself that I am unable to tolerate large amounts of pred. 60 mg, makes me a raving lunatic, so the largest amount that I start off on is 40mg, but I can’t be on that too long. I seem to get enough of an effect on 25-30 mg and that is more tolerable, and I am stuck at 20, but I guess I can live on that for a while until the methotrexate kicks in. So maybe your dr. can give you a smaller dose to start on, so that the side effects are more tolerable. Also a 5 mg maintenance dose isn’t bad, but try to follow his instructions, and hang in there.  Kim F

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I had one GI (in another province) that said UC isn’t related to what you eat, and he never mentioned stress. The GI I have now says food and stress are related. I’m not sure, but it makes sense to me that it might be (especially foods) because (please correct me if I’m wrong – I’m no expert) I’d think the byproducts resulting from the breakdown of foods in the digestive system would be qualitatively different, depending on the food itself. Therefore, the waste products that reach the colon might actually be different. Regarding stress, there’s a surprising number of diseases – and the ones I;m aware of are inflammatory diseases (which includes UC)- that have stress as a causal factor. More specifically, stress might impact on the immune system. Also, I kept a food diary for 5 months and noticed definite patterns with a number of foods co-relating with diarreah, cramps, nausea, gas. I know I have UC. There’s a possibility I have irritable bowel syndrome too, but I’m looking at other possibilities too. Can someone tell me what disorders (or whatever) can be caused or aggravated by food/stress other than UC (including – what are the symptoms of an ulcer when it’s just starting)? Thanks. Kim – Hide quoted text — Show quoted text – Also, I have to agree with your doc.  Colitis has nothing to do with what you eat.  Colitis is in your colon and the only thing that reaches your colon are waste products.  Those are all pretty much identical once they reach the colon.  The food is all digested in the stomach and mostly in the small intestine.  I eat whatever I want and it never brings on a colitis flare.

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Sorry you’re having a bad time with Prednisone.  I’ve had UC for about 4 years and been through Sulfaslazine and Asacol until they quit working.  Then on to Pred.  On 40 mgs. daily I’m wired–insomnia but who cares, I’m energized!  Lightening reflexes, but clumsy beyond belief.  While cleaning the dining room table off at 2:00 AM I accidentally knocked a half full can of Pepsi into the air.  It spun once,  and I snatched it upright with one hand and replaced it without spilling a drop. My wife was amazed! Pred does seem to agravate my arthritis, so I took Relafen for a month as well.  My psoriasis, which was extensive, disappeared almost overnight.  My doctor doesn’t think much of a maintenance regimen that includes steroidal antiinflamatories and non-steroidal antiinflamatories, so I don’t get that anymore. My hay fever allergies have disappeared also.  Overall, so far, I think Pred. has been a plus for me.  I only take 10 mgs. every other day and my UC seems to be in remission.  I don’t like to take more than 20 mgs. per day, since I have to stop flying my airplane on that dosage.  Hate being stuck on the ground! Hope you find something that works for you. Don – Hide quoted text — Show quoted text -Hello all.  I am so happy to find this site.  I have a very procedure and pill oriented GI, who tells me UC is not stress related, it doesn’t matter what I eat, and my quitting smoking four months before my diagnosis has nothing to do with my UC.  He just wants to scope me and give me pred.  Of course, pred makes me absolutely nutty.  My only thoughts on pred are "Who cares, what does it matter, and what can I do about it anyway?"  I’m sure I don’t have to tell you all about those dirty little steroids.  So, I won’t take them.  No more.  Nope. Had it.  Since my doctor only tells me to take them, I’ve quit talking to my doctor.  I find the symptoms wax and wane without pred.  Sometimes its BMs as usual, sometimes its hamburger meet and a pink to red toilet bowl.  My question is: is there anyone else out there who just said no to these drugs, and how is it going?  Any alternative therapies?  Natural remedies?  Aside from running to the bathroom a lot more, am I really doing more damage to myself by NOT taking the pred than I would to my essential organs if I did take it?  Thanks for all your thoughts on this.

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I’ve been reading posts here for at least a couple weeks, and I’m hearing so much about Prednisone and mood swings.  Does everyone have them while taking the drug?

I always feel energized and focused on prednisone, at least initially. It’s a postive feeling, not a negative one. I’d take prednisone all the time for that feeling, if it weren’t for the long-term side effects. —

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I’m with you, Wayne.  I’ve been on 40mg pred for several months, and it’s the most energy I’ve ever had.  Also, my family will agree, the mood swings for me are minimal.  I don’t plan to be on it forever, but I’m thankful it’s available to those of us who truly need it.

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Happy Easter every one.     I too have gone off of prednisone by myself not by doc’s prescription, I was afraid of having to have a hip replacement, but I feel better that way now but have gone back to the way I was before any meds at all, but I feel better than when I was on meds. I am only taking 40 mg of pepsid, one each evening. I still have diarrhea, but psychologicly, I feel a lot better. I hope I don’t get cancer of the colon now. ugh! Alan

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I said no to pred when I was having a bad flare and the doc thought the asacol and dipentum wasn’t working.  He said "it’s just a short course – 2 or 3 weeks."  But I had heard horror stories from other colitis patients and even people who had asthma.  And the weight gain and moonface can come on rapidly and take up to a year to go away.  This is what I heard, but it may not be true.  In any case, I simply upped my asacol dosage and increased my willpower and my flare ceased.  To this day I have never taken prednisone! Has your doc suggested asacol, imuran, 6-mp, dipentum, rowasa, or any of those other therapies?  I would go with that first. Also, I have to agree with your doc.  Colitis has nothing to do with what you eat.  Colitis is in your colon and the only thing that reaches your colon are waste products.  Those are all pretty much identical once they reach the colon.  The food is all digested in the stomach and mostly in the small intestine.  I eat whatever I want and it never brings on a colitis flare. As for stress, it may or may not play a role.  I don’t see a pattern in my flares, but other people may be different. Debra everyone’s favorite bodybuilding librarian!

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I agree with you, Pres makes me nutty

I’ve been reading posts here for at least a couple weeks, and I’m hearing so much about Prednisone and mood swings.  Does everyone have them while taking the drug? My son began Pred on 4 March at 60mg for two weeks, then reduced to 50mg for two more weeks, and now at 40mg.  He hasn’t had a single sign of any mood swings, or any puffiness, or any other side effects of the drug, save the fact that he seems to break out with extensive batches of tiny pimples on his face and upper torso which go away in a day.  ?? I am very thankful that he hasn’t had any substantial side effects, and I wonder whether it has anything to do with the supplements that he takes. The list is as long as your arm, but he is improving so dramatically that the gastroenterologist is amazed.  One thing that I haven’t seen here is much talk about NUTRITION, so I am getting the idea that the majority of people with IBD are not much into supplementation.  (I know there are exceptions so don’t bombard me :)  I really think that it makes a HUGE difference. Happy Easter everyone!

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I have tried most of the drugs available for Crohns, including taking prednisone for a few years. I have been lucky enough not to have negative mood swings with prednisone – many people have no noticeable pshychological effects. I mostly felt more energetic and always hungry, I slept less, I ate more, and I was grateful for the benefits of less diarrhoea and less pain and fewer side effects like sore joints while I was on prednisone. But the worries about long term bone damage were reinforced every time I saw my doctor. I am now taking 6-mp and have weaned off of prednisone. So I was glad to have prednisone available and now I’m glad to be off it. Prakash – Hide quoted text — Show quoted text – Hello all.  I am so happy to find this site.  I have a very procedure and pill oriented GI, who tells me UC is not stress related, it doesn’t matter what I eat, and my quitting smoking four months before my diagnosis has nothing to do with my UC.  He just wants to scope me and give me pred.  Of course, pred makes me absolutely nutty.  My only thoughts on pred are "Who cares, what does it matter, and what can I do about it anyway?"  I’m sure I don’t have to tell you all about those dirty little steroids.  So, I won’t take them.  No more.  Nope.  Had it.  Since my doctor only tells me to take them, I’ve quit talking to my doctor.  I find the symptoms wax and wane without pred.  Sometimes its BMs as usual, sometimes its hamburger meet and a pink to red toilet bowl.  My question is: is there anyone else out there who just said no to these drugs, and how is it going?  Any alternative therapies?  Natural remedies?  Aside from running to the bathroom a lot more, am I really doing more damage to myself by NOT taking the pred than I would to my essential organs if I did take it?  Thanks for all your thoughts on this.

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I agree with you, Pres makes me nutty do, hence while I’ve reduced and stopped the other day. Bye – Hide quoted text — Show quoted text – Hello all.  I am so happy to find this site.  I have a very procedure and pill oriented GI, who tells me UC is not stress related, it doesn’t matter what I eat, and my quitting smoking four months before my diagnosis has nothing to do with my UC.  He just wants to scope me and give me pred.  Of course, pred makes me absolutely nutty.  My only thoughts on pred are "Who cares, what does it matter, and what can I do about it anyway?"  I’m sure I don’t have to tell you all about those dirty little steroids.  So, I won’t take them.  No more.  Nope.  Had it.  Since my doctor only tells me to take them, I’ve quit talking to my doctor.  I find the symptoms wax and wane without pred.  Sometimes its BMs as usual, sometimes its hamburger meet and a pink to red toilet bowl.  My question is: is there anyone else out there who just said no to these drugs, and how is it going?  Any alternative therapies?  Natural remedies?  Aside from running to the bathroom a lot more, am I really doing more damage to myself by NOT taking the pred than I would to my essential organs if I did take it?  Thanks for all your thoughts on this.

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Hello all.  I am so happy to find this site.  I have a very procedure and pill oriented GI, who tells me UC is not stress related, it doesn’t matter what I eat, and my quitting smoking four months before my diagnosis has nothing to do with my UC.  He just wants to scope me and give me pred.  Of course, pred makes me absolutely nutty.  My only thoughts on pred are "Who cares, what does it matter, and what can I do about it anyway?"  I’m sure I don’t have to tell you all about those dirty little steroids.  So, I won’t take them.  No more.  Nope.  Had it.  Since my doctor only tells me to take them, I’ve quit talking to my doctor.  I find the symptoms wax and wane without pred.  Sometimes its BMs as usual, sometimes its hamburger meet and a pink to red toilet bowl.  My question is: is there anyone else out there who just said no to these drugs, and how is it going?  Any alternative therapies?  Natural remedies?  Aside from running to the bathroom a lot more, am I really doing more damage to myself by NOT taking the pred than I would to my essential organs if I did take it?  Thanks for all your thoughts on this.

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Cyclosporin and Colitis : Need answers

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hello ms dink, i am one of the pharmacists who work at mt sinai on the gi care center, just a short note, in my experience most patients do very well when cyclosporin is started,and many have very few side effects.if you have a relapse,please give cyclosporin a try before surgery,if i can be of anymore specific help,write back.good luck james m – Hide quoted text — Show quoted text – I have UC. I have had 5 severe relapses in 4 years.I have been on 6mp for the past 2 years. If I relapse again the doctor (excellent asoc. Mt. Sinai Med Center)  wants to try cyclosporin before contemplating surgery.  Any thought out there? Can use adv. !! Miss Dink

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I have UC. I have had 5 severe relapses in 4 years.I have been on 6mp for the past 2 years. If I relapse again the doctor (excellent asoc. Mt. Sinai Med Center)  wants to try cyclosporin before contemplating surgery.  Any thought out there? Can use adv. !! Miss Dink

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I have UC. I have had 5 severe relapses in 4 years.I have been on 6mp for the past 2 years. If I relapse again the doctor (excellent asoc. Mt. Sinai Med Center)  wants to try cyclosporin before contemplating surgery.  Any thought out there? Can use adv. !! Miss Dink

Im on Cyclo following a serious Colitis flare-up.   It helped me avoid surgery (a bed was waiting for me!) so its a drastic step, reserved for when less dramatic drugs don’t work. Side effects – for me a strangely poor ability to judge temperature with hands amd feet (not serious short term) and some indication of strain on kidneys, but because this is regularly checked i feel confident with my doage, which gradually becomes less after the initial amounts. My aim is to come off the Cyclo in remisision, then be able to take advantage of a new diet and lifestyle changes and hold that remission with only Asacol as maintainence.   Were I to repeatedly slip into severe remissions despite my best efforts I would consider an internal J-pouch colectomy as a way of dealing with the condition. Please e-mail me with more specific questions on Cyclo, ive read a fair bit about it, as you would expect. Gerry

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