Question:

Aspirin and aspirin like drugs are respnoible for 15000 deaths a year. The left wrist is where i had my arthritis.I noticed late last year that it hadn’t bothered me for some time.I do lots of lifting at work and at one time it got to the point that i was scared to lift anything for fear of that stabbing pain hitting me.My supplements seem to have gotten rid of the arthritis along with keeping my Crohn’s under control now for 5 years and running.Been off all the drugs for 4.5 years.

– Hide quoted text — Show quoted text – I just wanted to say thank you to all of you who took the time to respond to my inquiry last week.  I have decided to go see an orthopedic specialist instead of my gastroenterologist for answers to my nagging wrist problems.  I will certainly let you all know how it goes and what my prognosis might be.  In the meantime, I am going to try some topical arthritis rub and see how I do as no aspirin or Tylenol seems to be doing the trick for me.  However,  nothing can compare with getting a couple of MRI’s to really see what’s going on I figure….  I’ll keep you posted.  Thanks again and I’ll talk to you soon. Hi there everybody – I’m new to the group,  but have been diagnosed with Crohn’s for 10 years now.  Just had a flare-up 6 months ago and have recently gone off all 3 drugs (pred, asacol and purinthol) approx 2 months ago. Started experiencing pain in my left wrist about 2-3 months ago and thought I had sprained it at first until the same pain showed up in my right wrist about 10 days ago. Has anyone else had this happen to them and what have you been advised to do about it?  I am fearful of taking too much pain medication for this now constant pain I have in both wrists, but don’t want to lose the usefulness of my hands either.  I already know to stay away from NSAIDS (i.e. ibuprofen) as this drug can cause flare-ups (and probably was one cause of my latest bout with the disease), but taking too much aspirin is probably not a good idea either.  I am going to call my doctor tomorrow morning but wanted to float this concern out to all of you in the meantime and get your precious feedback. I appreciate anyone’s insight on this subject.  Thanks to you all.

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I just wanted to say thank you to all of you who took the time to respond to my inquiry last week.  I have decided to go see an orthopedic specialist instead of my gastroenterologist for answers to my nagging wrist problems.  I will certainly let you all know how it goes and what my prognosis might be.  In the meantime, I am going to try some topical arthritis rub and see how I do as no aspirin or Tylenol seems to be doing the trick for me.  However,  nothing can compare with getting a couple of MRI’s to really see what’s going on I figure….  I’ll keep you posted.  Thanks again and I’ll talk to you soon. – Hide quoted text — Show quoted text -Hi there everybody – I’m new to the group,  but have been diagnosed with Crohn’s for 10 years now.  Just had a flare-up 6 months ago and have recently gone off all 3 drugs (pred, asacol and purinthol) approx 2 months ago. Started experiencing pain in my left wrist about 2-3 months ago and thought I had sprained it at first until the same pain showed up in my right wrist about 10 days ago. Has anyone else had this happen to them and what have you been advised to do about it?  I am fearful of taking too much pain medication for this now constant pain I have in both wrists, but don’t want to lose the usefulness of my hands either.  I already know to stay away from NSAIDS (i.e. ibuprofen) as this drug can cause flare-ups (and probably was one cause of my latest bout with the disease), but taking too much aspirin is probably not a good idea either.  I am going to call my doctor tomorrow morning but wanted to float this concern out to all of you in the meantime and get your precious feedback. I appreciate anyone’s insight on this subject.  Thanks to you all.

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I have the arthritic wrist problem, as well as back and leg aches.  Although I’ve never had it offically diagnosed, I’m sure it’s arthritis (common for CD suffers).  Tylonol helps, if it’s really a tough day I’ll take some of my Crohn’s pain meds for it. Try a hot soak and some Camomille (SP?) Tea, seems to help me.

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Hi, i don’t know if this information will help you, but i was diagnosed with crohns 9 years ago and was diagnosed with arthrits (actually juvenil arthritis) before i was diagnosed with crohns, later i was told that a there a quite a few people who were diagnosed with both problems. my joint pain is in my knees especially the left one, a few months ago the pain got really bad, and i was given "Salazopryn" which is apparently used for both crohns and arthrits (kind of cool that you can get one drug for both don’t you think hope this information is helpfull – Hide quoted text — Show quoted text – Hi there everybody – I’m new to the group,  but have been diagnosed with Crohn’s for 10 years now.  Just had a flare-up 6 months ago and have recently gone off all 3 drugs (pred, asacol and purinthol) approx 2 months ago. Started experiencing pain in my left wrist about 2-3 months ago and thought I had sprained it at first until the same pain showed up in my right wrist about 10 days ago. Has anyone else had this happen to them and what have you been advised to do about it?  I am fearful of taking too much pain medication for this now constant pain I have in both wrists, but don’t want to lose the usefulness of my hands either.  I already know to stay away from NSAIDS (i.e. ibuprofen) as this drug can cause flare-ups (and probably was one cause of my latest bout with the disease), but taking too much aspirin is probably not a good idea either.  I am going to call my doctor tomorrow morning but wanted to float this concern out to all of you in the meantime and get your precious feedback. I appreciate anyone’s insight on this subject.  Thanks to you all.

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Started experiencing pain in my left wrist about 2-3 months ago and thought I had sprained it at first until the same pain showed up in my right wrist about 10 days ago.

Jim, Does your job require you to use the computer a great deal?  If so, you might be developing carpal tunnel (sp?) disease in your wrists. Sometimes we IBDers actually have medical problems that have nothing to do with our disease. For joint pain my doc suggested Tylenol.  He says it’s easier on the system than aspirin. Lori

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Don’t know if you have any of the books that you can get through the book store on the ccfa site but they are well worth the investment.  I have half a dozen and between them all I feel that every aspect of IBD is addressed and well detailed.  

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Hi Jim: I had carpal tunnel surgery 12 years ago and my wrist has been perfect ever since. Now if I could just say the same about the rest of me <G. Actually, I have had lots of joint problems and the only things that seem to help are heat (heating pad, hot bath, not at the same time) and rest. You are right to stay away from NSAIDS. If I have really bad joint pain I will take Darvocet or something stronger. Rebecca

– Hide quoted text — Show quoted text – Started experiencing pain in my left wrist about 2-3 months ago and thought I had sprained it at first until the same pain showed up in my right wrist about 10 days ago. Jim, Does your job require you to use the computer a great deal?  If so, you might be developing carpal tunnel (sp?) disease in your wrists. Sometimes we IBDers actually have medical problems that have nothing to do with our disease. For joint pain my doc suggested Tylenol.  He says it’s easier on the system than aspirin. Lori

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Hi there everybody – I’m new to the group,  but have been diagnosed with Crohn’s for 10 years now.  Just had a flare-up 6 months ago and have recently gone off all 3 drugs (pred, asacol and purinthol) approx 2 months ago. Started experiencing pain in my left wrist about 2-3 months ago and thought I had sprained it at first until the same pain showed up in my right wrist about 10 days ago. Has anyone else had this happen to them and what have you been advised to do about it?  I am fearful of taking too much pain medication for this now constant pain I have in both wrists, but don’t want to lose the usefulness of my hands either.  I already know to stay away from NSAIDS (i.e. ibuprofen) as this drug can cause flare-ups (and probably was one cause of my latest bout with the disease), but taking too much aspirin is probably not a good idea either.  I am going to call my doctor tomorrow morning but wanted to float this concern out to all of you in the meantime and get your precious feedback. I appreciate anyone’s insight on this subject.  Thanks to you all.

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Welcome to the newsgroup, Jim. Not sure I can help. All I can do is tell my experience. I have UC, and am taking Pentasa (4000 mg, 16 capsules/day). From time to time, about once or twice a year, I have problems with my right wrist. I wear an elastic wrist support for about a week, and it is usually gone. I think I credit my problem to carpel-tunnel syndrome, what with using a computer all day at work, and then on the internet at home. (I am right handed, and I think it is the constant use of the mouse.) I don’t think mine is UC related, since it goes away quickly with the elastic wrist support. And it has never been bad enough to need pain medication. I have read that some people with UC (ulcerative colitis) or CD (crohn’s disease) do experience joint pains. And I recall reading some past posts on this newsgroup from people that have had joint pain. I hope some of them will come forward and reply to your question. Howard – Hide quoted text — Show quoted text – Hi there everybody – I’m new to the group,  but have been diagnosed with Crohn’s for 10 years now.  Just had a flare-up 6 months ago and have recently gone off all 3 drugs (pred, asacol and purinthol) approx 2 months ago. Started experiencing pain in my left wrist about 2-3 months ago and thought I had sprained it at first until the same pain showed up in my right wrist about 10 days ago. Has anyone else had this happen to them and what have you been advised to do about it?  I am fearful of taking too much pain medication for this now constant pain I have in both wrists, but don’t want to lose the usefulness of my hands either.  I already know to stay away from NSAIDS (i.e. ibuprofen) as this drug can cause flare-ups (and probably was one cause of my latest bout with the disease), but taking too much aspirin is probably not a good idea either.  I am going to call my doctor tomorrow morning but wanted to float this concern out to all of you in the meantime and get your precious feedback. I appreciate anyone’s insight on this subject.  Thanks to you all.

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Question:

I have relatives there (ancestors from there also).. Andy – Hide quoted text — Show quoted text –   Is there anybody from Croatia who has got colitis or chron?

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In Croatia, we drink the milk of the morning goat.  Then for lunch we rub weeds on our heads.  For dinner we dance on the seed pods of the stink plant.  In between, we have a snickers bar. Sometimes we go to the White Hen and just get a sandwich. Andy

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In Croatia, we drink the milk of the morning goat.  Then for lunch we rub weeds on our heads.  For dinner we dance on the seed pods of the stink plant.  In between, we have a snickers bar. Sometimes we go to the White Hen and just get a sandwich. Andy

Is there a place called Croatia in Apalacheans?!?

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In Croatia, we drink the milk of the morning goat.  Then for lunch we rub weeds on our heads.  For dinner we dance on the seed pods of the stink plant.  In between, we have a snickers bar. Sometimes we go to the White Hen and just get a sandwich. Andy

 You Croats are so strange:))

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andy and stojan and pero roflmao… thanks i needed that… annie in boston (where all we do is throw tea overboard into the harbor…drink green beer on st patricks day…and talk funny)

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Hi Tomislav,   I had my terminal ileum resected in 1990 and have had no real problems since.  I hope yours is just as successful.  The only real problems that I have now are the secondary effects of the disease like the diarrhea (it will get a lot worse after the resection–but take Questran and that will help control it) and arthritis.  I had lived with such horrible pain, cramping, and bleeding for so long before my surgery (I was just treated with drugs for the previous 20 years) that the relief after the surgery was miraculous. (And you will notice no Crohn’s pain immediately after surgery).  Recovery from that kind of surgery takes awhile.  It will take you a good 6 weeks to really feel like yourself again, but it is well worth it.  Good luck to you!    Jane – Hide quoted text — Show quoted text –  Is there anybody from Croatia who has got colitis or chron? I have crohn desise for about 1 year, and I’am preparing for the resection in terminal ileum region…. I’am from Zagreb, Croatia…

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 Is there anybody from Croatia who has got colitis or chron?

I have crohn desise for about 1 year, and I’am preparing for the resection in terminal ileum region…. I’am from Zagreb, Croatia…

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  Is there anybody from Croatia who has got colitis or chron?

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  Is there anybody from Croatia who has got colitis or chron?

My girlfriend Roberta is still in emergency after her second operation (12 cm of ileum stricture removed) in 1,5 years. She’s recovering, but what next?  

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hi from boston mass..usa…but crohns and colitis are the same in any language <g horrid and messy etc… i just thought of something why dont we exchange words in different languages for things like 1) crap or sh–t or you know..bowel movements 2)colonoscopy 3) golitely or whatever you drink there 4) diarrhea 5) pain i think we should start a dictionary of terms in different languages from everyone on here….we are an international group..lets at least know how to express our ibd stuff in many tongues.. what fun it would be to go into my doctor (who speaks spanish) and tell him i have the sh–ts  in say..dutch (martin help me here) love and welcome to the group.. and yes i am always this crazy especially in a flare…and on darvon

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welcome stojan.. am praying for your girlfriend good that you are on the board with us…you can be a great help to her… annie in boston mass

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Go for it Barbara!!!!!! – Hide quoted text — Show quoted text – My wife has Crohn’s disease for about 12 years now. She had 2 surgeries and afterwards she felt better. Now things are going worse again and her specialist told her she might need a stoma if things won’t improve in time. This frightens her of course and she has a real negative idea about this. Is there anyone who can tell us about his or hers experience with a stoma?

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My wife has Crohn’s disease for about 12 years now. She had 2 surgeries and afterwards she felt better. Now things are going worse again and her specialist told her she might need a stoma if things won’t improve in time. This frightens her of course and she has a real negative idea about this. Is there anyone who can tell us about his or hers experience with a stoma?

I remember the time when my gastroenterologist first mentioned the possibility of having a ileostomy, stoma. I told my wife I would rather die. That was several years ago when I was very negative about having a "bag" As it has turned out it was one of the best decisions I have made. The pain has gone. The pluses are almost to many to list in this reply. My wife and I have got our life back. We can go out together without the fear of pain, running to the toilet, the mess I would make at home trying to get to the bathroom on my hands and knees. There are still moments of mild depression, body image etc, but I’ll never forget waking up in the intensive care ward after my surgery was completed. The crohn’s pain HAD GONE. I can remember the pain from the operation and I was hurting a lot, but nevertheless that horrible, persistant, crohn’s pain was gone. But I’m sure you will get other view points, you couldn’t have come to a better place for comments and support. You might like to check out alt.support.ostomy as well. John Harman(I)

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I had Crohn’s and had an ileostomy in 1975 and have never regretted it. Your wife can email me if she likes.  Also the suggestion of alt.support.ostomy is a good one too. Love, Bonnie aka DAWN

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My wife has Crohn’s disease for about 12 years now. She had 2 surgeries and afterwards she felt better. Now things are going worse again and her specialist told her she might need a stoma if things won’t improve in time. This frightens her of course and she has a real negative idea about this. Is there anyone who can tell us about his or hers experience with a stoma?

My life began at age 34 when I got my ileostomy! I can do so many things I could never do before. I’m out of pain and am no longer tied to the bathroom. I too was afraid than an ostomy would limit me — instead it has freed me. I have written a series of ostomy myths and will e-mail them to you. Barbara Skoglund (I)

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hi well i have had a stoma about 6 yrs and just this last august i fell ill again and had my colon removed and the stoma was moved from my left side to my right side. living with a stoma is not nearly as bad as you would believe. it took me a couple of months to adjust to it but you need to remenber that even if you have trouble adjustingto a stoma it beats the alternative.   if you have specific questions {come on with them}

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My wife has Crohn’s disease for about 12 years now. She had 2 surgeries and afterwards she felt better. Now things are going worse again and her specialist told her she might need a stoma if things won’t improve in time. This frightens her of course and she has a real negative idea about this. Is there anyone who can tell us about his or hers experience with a stoma?

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I suggest you visit "alt.support.ostomy" for information and support for both of you.  It’s a great group.  You can ask absolutely anything and get helpful responses. Someone in that group has "been there–done that".  I do suggest that you check the back postings to that group on dejanews–there are some recent threads that should be very helpful. I had UC, which tends to produce different results and experiences from those who have to deal with Crohn’s, so your best bet is to follow "Crohnies" postings.  But any should help.   Barbara, Joy, Crystal–chime in here with the womens’ perspective. All the best to both of you. Carl – Hide quoted text — Show quoted text – My wife has Crohn’s disease for about 12 years now. She had 2 surgeries and afterwards she felt better. Now things are going worse again and her specialist told her she might need a stoma if things won’t improve in time. This frightens her of course and she has a real negative idea about this. Is there anyone who can tell us about his or hers experience with a stoma?

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Question:

have to say Amen to all that you said…..you just seem to know how to say it all……Steve, Damn your good!!! He he he he…..

Yes, well — if there’s one thing I really appreciate, it’s the sound of my own voice — even via Usenet! Thanks! love, 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/

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Steve, I couldn’t agree more with everything you said!  You really have a way with words:) Paty

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Maybe it’s because we have seen too many doctors who think they know everything and their patients don’t know jack

i agree with Steve! or too, because so often we take our troubles to them …only to hear lines like, "well…if it hasnt killed you by now, it’s not likely it will!!"  hmmmm…. funny the things they say to you that stick with you long after they FINALLY make that long overdue dx of Crohns/colitis, huh?!!  or perhaps in the case of my "former" GI doc who implied that i asked too many questions, stating that he felt he gave me TOO much information!! debbie

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Thanks…I’ll try to remember those!! Philnhet

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I’m thinkin’! Last time a pharmacist questioned one of my prescriptions, I told him in no uncertain terms that unless there was a big risk of drug interaction, he had no business attempting to tell my doctor how to treat my illnesses —

and that I would not tolerate any bull shit from that   . i gather my dr has told her that he will personally have her license yanked and her firstborn child shot if she pulls this stunt again……. hmmm–for some reason my computer refuses to type capitals suddenly1 john

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Hey!  Why do some people feel as if their Doctor is the enemy?  It’s not their fault that Prednisone is the only answer in some cases and keep in mind that no one can "make" you take anything!  Maybe it’s just my Docs but, at some point in their life; they have spent some time in a hospital for one thing or another OR a relative etc…  So they want to help and I really believe some wish they had a magic wand and could make it all go away…  But, back to reality…

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Hey!  Why do some people feel as if their Doctor is the enemy?  It’s not their fault that Prednisone is the only answer in some cases and keep in mind that no one can "make" you take anything!  Maybe it’s just my Docs but, at some point in their life; they have spent some time in a hospital for one thing or another OR a relative etc…  So they want to help and I really believe some wish they had a magic wand and could make it all go away…  But, back to reality…

Maybe it’s because we have seen too many doctors who think they know everything and their patients don’t know jack. Maybe it’s because of the ER doctor who told me he couldn’t treat me (for what turned out to be my first kidney stone) if I couldn’t keep quiet. Maybe it was the 2nd year Resident who looked like OJ before that was a bad thing — the one that told me he could flush all the barium out of my system before the tests tomorrow after I specifically told him that things tend to get caught in this fistula or that and move in different speeds. Maybe it was the director of GI medicine who told me that "a little knowledge is a dangerous thing" as he dodged my questions about CD. Maybe it was the intern who wrote that I was "uncooperative" when I told her that my ass was too sore from all the tests and preps to take another series of enemas. Maybe it was the doc who came into my room and asked my room-mate, who was undergoing chemotherapy for leukemia, if he could take the aortic catheter out so he could practice putting it back in. I’ve had some really good doctors in my time, and I thank God for each and every one of them! But I am paying them for a service — they are not doing me a favor by treating me, I am paying them and paying them very well. And when it all comes down to it, very few of them can meet the standards set by first doc — the doc who delivered me in 1964 and then had me take a medical leave from college in 1982 so he could figure out what was really wrong with me — CD. The doc that sat down with my mom outside my hospital room when I had a near total obstruction and asked, "What are we going to do? Our boy is really sick and may need surgery." I really don’t see doctors as the enemy until they have proven that they are, but it’s hard to accept less when you’ve had the best. And no, no one wanted me on prednisone for 11 years — but they were a whole lot quicker to do that than they are to consider that I might really need some relief from this damn pain! Sorry, I sound a lot angrier than I really am! Like I said, I have good doctors, and I expect that they WILL respond to my needs, but I just don’t see why they all shouldn’t be so good. love, 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/

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have to say Amen to all that you said…..you just seem to know how to say it all……Steve, Damn your good!!! He he he he…..

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HELLO STEVE!!! I would like to give you great big hugs right at this moment, I just feel like you need them…..and thank you for the hugs for my little guy….that really is a nice feeling to know that there are great people out here that really do care about others even in their own times of suffering…….Lots of hugs to you Steve….. Tisha

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HELLO STEVE!!! I would like to give you great big hugs right at this moment, I just feel like you need them…..and thank you for the hugs for my little guy….that really is a nice feeling to know that there are great people out here that really do care about others even in their own times of suffering…….Lots of hugs to you Steve….. Tisha

Thanks — I was kind of all over the place last night! I’m not quite as tired tonight, but I still feel pretty bad — and I still think my point about pain medicine is accurate! Hugs all around — they may not cost anything, but they sure are worth a whole lot! love, 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/

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Addiction is a horrible thing – I don’t think the Dr’s mean it in that sense. I do know people who take heavy pain-meds and after surgery could get no relief.  Not even Morphine will work. I started taking pain meds and the doses got higher and the meds more potent – I had built up a tolerance to the drugs. I look at it this way – I’m 27yrs old – if I rely on pain meds now – what am I going to do 20years from now?? I smoke pot! – this helps – relaxes my muscles and I actually can eat!  If you research pain meds – you will find a whole lot of them have terrrible side-effects – Marijuanna does not – Of course there’s that "legal" issue – but I’m willing to take the risk

True — we do have to consider tolerance or habituation to pain medicines, but the docs are really only worried that someone will see them as pain-pill pusher — that’s their main dig. But they sure didn’t seem to mind so much when they got me addicted to steroids. And that’s the bottom line — they did that so that I could survive in some semblance of comfort despite the horrible side-effects later down the line, so why not the pain meds? love, 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/

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I smoke pot! – this helps – relaxes my muscles and I actually can eat!  If you research pain meds – you will find a whole lot of them have terrrible side-effects – Marijuanna does not – Of course there’s that "legal" issue – but I’m willing to take the risk

Oh, and marijuana gives me horrendous headaches! I had to stop smoking that a long time ago, and a new trial not so long ago proved that I still cannot tolerate it. Oh, well! love, 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/

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I was just told by my (now EX!!!) pharmacist that she had reported me and my doctor to the police!!!  She said I was the only patient she had getting a "controlled substance" and wanted to have the cops look into me and my dr because of my tincture of opium!!!! John

Hmm, does the term "meddling bitch" ring a bell? I’m thinkin’! Last time a pharmacist questioned one of my prescriptions, I told him in no uncertain terms that unless there was a big risk of drug interaction, he had no business attempting to tell my doctor how to treat my illnesses — and that I would not tolerate any bull shit from that quarter. Just my opinion! 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/

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I feel the same way as Spoilboys…..sick and tired of unsympathetic Dr’s. I am lucky though, that my PCP is sensitive enough to give me sedatives to get me through any of the GI procedures whenever I insist upon it. I’m considering a pain clinic too….I’m tired of dealing with my monthly cramps in addition to the GI pain……when the only thing that helps is Ibuprophin and I’m not supposed to take that! (Bad for the gut..I also have GERD)..so they suggest My opinion, is that if we are closely monitored, why not let us use RX pain meds when necessary? I’ve used Vicodin (when I could get it) and it works beautifully (only when I’m not driving and working)..it makes me "woozy". Oh well…there’s my 2 cents worth. Philnhet

I have been told that it works for some people — I’d just as soon drink a glass of water, myself! Incidentally, there are a few newer NSAID’s that are more gut-friendly that you may want to talk with your doc about — Relafen and Arthrotec, and there is another, but I don’t remember what it is, though I may have to try it soon! love, 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/

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I am on a morphine based pain control program, MS-Contin-30,  a slow release form of morphine which I take twice a day and regular 10 mg morphine tablets when the pain breaks through.  Because one can develop a tolerance for morphine I was a little bit worried when I went in for a hernia repair last month.  Would they take into account the crohn’s pain as well as any tolerance I may have developed over the last few years in addition too the pain from the surgery.  I spent the first post-op day in the ICU "so we can give you plenty ofpain killers without having to worry about your breathing"  Let me tell you fentanyl (SP) is really marvelous stuff, my wife said she saw me melt as they administered it.  Then it was morphine via the  PCA machine for a few days followed by MS-Contin and morphine injections as required. For the record I have been on the morphine program for over three years and I am not displaying signs of adiction yet.  I wrote my ham radio exam while I was under the influence and got 89%.  The only thing that I don’t do is drive unless I have skipped my meds. Being pain free is almost as good as being cured!!!! Good luck with your Doc. – Paul – Hide quoted text — Show quoted text – Addiction is a horrible thing – I don’t think the Dr’s mean it in that sense. I do know people who take heavy pain-meds and after surgery could get no relief.  Not even Morphine will work. I started taking pain meds and the doses got higher and the meds more potent – I had built up a tolerance to the drugs. I look at it this way – I’m 27yrs old – if I rely on pain meds now – what am I going to do 20years from now?? I smoke pot! – this helps – relaxes my muscles and I actually can eat!  If you research pain meds – you will find a whole lot of them have terrrible side-effects – Marijuanna does not – Of course there’s that "legal" issue – but I’m willing to take the risk

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Addiction is a horrible thing – I don’t think the Dr’s mean it in that sense. I do know people who take heavy pain-meds and after surgery could get no relief.  Not even Morphine will work. I started taking pain meds and the doses got higher and the meds more potent – I had built up a tolerance to the drugs. I look at it this way – I’m 27yrs old – if I rely on pain meds now – what am I going to do 20years from now?? I smoke pot! – this helps – relaxes my muscles and I actually can eat!  If you research pain meds – you will find a whole lot of them have terrrible side-effects – Marijuanna does not – Of course there’s that "legal" issue – but I’m willing to take the risk

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I feel the same way as Spoilboys…..sick and tired of unsympathetic Dr’s. I am lucky though, that my PCP is sensitive enough to give me sedatives to get me through any of the GI procedures whenever I insist upon it. I’m considering a pain clinic too….I’m tired of dealing with my monthly cramps in addition to the GI pain……when the only thing that helps is Ibuprophin and I’m not supposed to take that! (Bad for the gut..I also have GERD)..so they suggest My opinion, is that if we are closely monitored, why not let us use RX pain meds when necessary? I’ve used Vicodin (when I could get it) and it works beautifully (only when I’m not driving and working)..it makes me "woozy". Oh well…there’s my 2 cents worth. Philnhet

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I was just told by my (now EX!!!) pharmacist that she had reported me and my doctor to the police!!!  She said I was the only patient she had getting a "controlled substance" and wanted to have the cops look into me and my dr because of my tincture of opium!!!! John

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hi everyone, this pisses me off too. the biggest reason i have to take percocet isnt so much for the pain (its some of the reason) but it slows down my diahrehea . narcotics are contsapating, although i will never be constapated, it does slow down my system.our pain isnt going to stop 3 weeks from tuesday, or next week, why do they have to include addiction into the picture. the reason i think anyone who can get into a pain mgmt. clinic should do so, thats their specialty, they are tought that pain will change personality, ruin the quality of life, and will increase suicide. i old my dr. that a person with cancer is given high doses of narcotics, they will either get better, or they will pass on,,,our crohns or uc  isnt gonna kill us tommorrow,, we have a cronic illness . it most likely isnt going away, so if a couple percocet is needed so that i can eat and leave the house,,,im gonna take it, if you dont want to perscribe it,,,ill go to someone who will. love you money talks,mine,says, "goodbye"

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You just derscribed my life.  I also take vicidin the pain is daily and constant, the only thing t hat helps is these pills.  My new dr. does not believe in "pain meds"  says it is only a band aid.  thank god my mom can get them , she gives to me when needed.  I too feel like a junkie, when i talk about it.  If only "healthy people knew what is really like.  Good luck, i hope things work out with you.  you are not alone

I am sorry — this just pisses me off no end! It’s not like we don’t have enough to deal with in just having IBD — but there’s just no reason we should also have to suffer a lot of pain with joint aches and abdominal cramps and all that on top of everything else! I am sick and tired of the bullshit! I don’t care what any doctor says, I’ll take the risk of addiction over the pain any day of the week! And so what if I do get addicted — as long as I’m in pain and the docs have the meds to keep me comfortable, why should anyone care whether I get addicted or not? Any doctor who says differently has no concept of what life is like from our side of the coin. It’s time that we stopped playing their stupid games and told them like it really is! They can label me a junkie if they want to — I don’t give a shit anymore! I’m telling my doctor I’m tired of hurting when he can give me something to help and that if he won’t, I’m gonna find a doc who understands what it is like to be in constant pain — when there is no reason I should have to be in constant pain! It isn’t just that it hurts, people — though that is a big part of it. Do you realize how much energy your body and mind must burn on dealing with chronic pain? It wears you out! It puts you in bed early! It means that a walk through the mall wears you out before you even have time to buy something! You know, I’ll try things. I’ll go to a pain clinic if they ask. I’ll try biofeedback and other techniques for relieving the pain if they will help me — but they are not going to sit back in their chairs and lecture me about addiction and then turn down my request for medicine any more. I refuse to put up with it! Sorry, I am just so tired of hurting all the time, I mean, even the darvocets and percocets only do so much anymore. It’s not like they get rid of the pain — they just knock it down to a more tolerable level. I don’t think its asking too much for a medical practitioner to provide his patients with a little bit of comfort. It’s funny — I am a strong person. I doubt that a lot of people would be able to handle what I handle as well as I do. But we all have our points where we need help, and I’m pretty sure that’s what I’m paying my doctor to do. I’m not asking for a miracle here — just a little help! Can you guys tell that I don’t feel well? <grin I’m sorry, I spent yesterday running down to South Boston, and Jeannie had the kids with her, but at one point she was so sick, and the kids were so tired of playing quietly with the leggo’s while Jeannie was getting the ISIS infusion that I just grabbed coats and said, "I think we need to go outside and run around a while." I spent today in bed sleeping it off — not that I regret it or anything! I love kids, and I loved playing with them, and I would gladly do the same all over again! If you could have seen the look on little Matthew’s face when Jeannie told them to sit down and play with the leggo’s — after they had been playing with them for an hour and a half and had just put them up — you guys probably would have done the same! And Jeannie didn’t have any choice — she was hooked up to the IV and had her head propped up on the trash can thinking she was going to spew at any moment, and having mood swings from the prednisone withdrawal. He he he — she threatened to drop them off at my house at midnight — I told her I needed something to do when the IBD-induced sleep problems hit! But she didn’t hold it against me that her daughter’s white tights are going to require a session of Chlorox therapy after the running around session! Besides, I’m pretty sure the reason that Matthew and Spencer put up the leggo’s was so they could crawl in my lap and play — so I figured I owed it to ‘em to get them out of there and let them have some fun! Oh, I’ve gone on and on again. He he he he he! Okay, so now you know where the screen-name ISpoilBoys really comes from! I’m sorry, they were just so cute and sweet little boys who needed to be loud and have fun and some adult attention! And Jeannie’s little girl was as big a tom-boy as either of the little ones who really were boys! I hope that Jeannie will be joining us here real soon — she need us here. She’s much better about not getting embarrassed about the CD and all — and I’ve told her that we talk straight here, we don’t pull the punches; we’re just as likely to complain about the shits as we are the "big d!" and that’s what she needs! Plus, she needs to feel the sense of belonging that we have here. This is such a wonderful place for those of us with these illnesses. Besides, I don’t know if I’ll get to see Matthew and Spencer again, but I hope that I can at least keep up with them if Jeannie is here! Smack me, people! I’m running on like a really bad sentence! love, ISpoilBoys Remove All SPAM Before Mailing! http://netdump.com/users/ispoilboys

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Well I thought I had found the closest thing to normalcy with vicodin/hydrocodone/lortab…I recently moved and went to a new doctor yesterday.  He seems optimistic and says that he can do me better than the pain meds.  Says I have IBD as well as Crohn’s.  Says that pain meds are bad because of the addiction factor esp for someone as young as me.  I’m perfectly willing to try the new drugs he suggests but am terrified that if they don’t work i’ll be left in a functionless state and in pain of course. Anyone have any advice.  If it comes down to running out of my prescription before he gets things undercontrol with his meds/ideas what is the fastest way to see a doctor who will prescribe my pain meds.  Jeez, I always feel like a junkie talking about pain meds but really without them I would be very uncomfortable every single day, unless of course I stopped eating then I would just be doubled over with hunger pains though i imagine they go away… -Kim

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I really wonder about some of the theoris from drs.  Pre requisites for graduation from med school should be 1 – have the belly slit open – not laproscopic either & 2  spend at least 1 week in a hosp bed totally dependent on the nursing staff.  It is amazing what a difference it makes when an md has experienced some of the "good things" they have so many idealistic theories about.  I can remember working in hosp with resident drs who were not real compassionate and several yrs later what a change in attitude after being on the other side of the fence.  That pres business could get to be a problem. Have you totally severed connections with prior doc? Dumb question – sure – if you’ve moved, that bridge is burned so to speak. Maybe you need to search for another GI doc  and that could be a eal challenge.  Far better to work on that now before getting in a corner.  Too much pain with this stuff to procrastinate.  Good Luck!

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Pre requisites for graduation from med school should be 1 – have the belly slit open – not laproscopic either & 2  spend at least 1 week in a hosp bed totally dependent on the nursing staff.

Better yet, make it a large county hospital with plenty of indigent patients, interns and student nurses.  And tape  his mouth shut so he can’t tell anyone he’s a doctor.  LOL!! Jan…  

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You just derscribed my life.  I also take vicidin the pain is daily and constant, the only thing t hat helps is these pills.  My new dr. does not believe in "pain meds"  says it is only a band aid.  thank god my mom can get them , she gives to me when needed.  I too feel like a junkie, when i talk about it.  If only "healthy people knew what is really like.  Good luck, i hope things work out with you.  you are not alone

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Question:

Craig, You should be very careful using antibiotics too much, especially in an "on and off" way, i.e. taking antibiotics for short periods of time, regularly. This the best possible way to induce antibiotic resistance in bacteria. Bacteria are very good at developing resistance to antibiotics. A good article about this can be read on the Scientific American web site. http://www.sciam.com/1998/0398issue/0398levy.html Obviously, the ciproxin (generic name "ciprofloxacin") is suppressing one or more species of bacterium that is involved in exacerbating your IBD. That is why you feel better when you take them:- the "problem" bacteria are being killed. However, if the "problem" species of bacteria that the Ciproxin affects develops resistance to Ciproxin, then the drug will cease to have effect on that species, and hence will then be useless to you as a treatment option, i.e. the ciproxin will simply stop working one day. The normal flora of the human intestine are very important for proper intestinal function. They break down certain food molecules into forms that we can absorb, they manufacture vitamins necessary for the human body. Vitamin K, for example, is produced by certain species of E. coli in the intestine. The human body cannot produce its own vitamin K. The normal flora also protect against disease. They occupy all of the available "anchoring sites" in the intestine, preventing disease causing bacteria and fungi from colonizing the intestine. In Inflammatory Bowel Disease, the normal flora can also play another role:- they become the target of immune system attack. Normally the normal flora are "tolerated" by the immune system. However, during the chronic inflammatory response that is the result of IBD, the bowel’s immune system begins to attack the normal flora, as well as species of disease causing bacteria that are present. This "all out war" scenario is what exacerbates severe flares of IBD. Antibiotics not only kill disease causing bacteria, they also sometimes kill off the normal flora. By killing off the bacterial flora of the intestines with antibiotics, the severe IBD flare is brought under control, because there is nothing left for the immune system to attack. However, if the antibiotic is not killing the species of bacteria that are the underlying cause of the chronic immune stimulus, perhaps Mycobacterium paratuberculosis, then the relief achieved by taking a single antibiotic will be short lived. After the normal flora are killed off by antibiotic treatment, the disease-causing bacteria will then have a chance to multiply more easily than before, since there are no other species of bacteria left for them to compete with in colonizing the intestines. This is why it is important to recolonize the intestine with "good" bacteria after antibiotic treatment, either by eating live yoghurt or taking "probiotics". As regards Mycobacterium paratuberculosis, there are only seven antibiotics which are effective against that bacterium. They are, in decreasing order of activity against the bacterium, 1. clarithromycin(Biaxin), 2. azithromycin(Zithromax) 3. rifabutin(Mycobutin) 4. streptomycin 5. ciprofloxacin(Ciproxin) 6. clofazamine 7. ethambutol To eradicate a Mycobacterium paratuberculosis infection requires (constantly) taking a combination of at least two of the above antibiotics for a minimum of six months and for possibly up to three years. For a discussion of the treatment of Mycobacterium avium infections with antibiotics, read "Clarithromycin against Mycobacterium avium complex infections". (The correct classification of Mycobacterium paratuberculosis is "Mycobacterium avium subspecies paratuberculosis"). http://www.iol.ie/~alank/CROHNS/RESEARCH/CHEMO/heifet96.htm The results of treating Crohn’s disease patients with rifabutin and clarithromycin/azithromycin, and sometimes clofazamine or ciprofloxacin, can be seen in "Two year outcomes analysis of Crohn’s disease treated with rifabutin and macrolide antibiotics". http://www.iol.ie/~alank/CROHNS/RESEARCH/CHEMO/htfull.htm For a discussion of some of the issues relating to antibiotic treatment for Crohn’s disease, see the following pages http://www.iol.ie/~alank/CROHNS/chemo.htm http://www.iol.ie/~alank/CROHNS/PRIMER/mycodrug.htm Alan.

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Hi Craig … on a completely un-CD related topic … what did you think of the XFiles movie? Don’t miss an episode, and watch the reruns too.  I like the movie.  Thought I’d be disappointed, and went in with rather meek expectations… but thought Carter pulled it off pretty well actually.   Knew it couldn’t answer all the questions, and of course it raised a few.  But special effects were good, and was a good entertaining 2 hrs. Hope you’re still feeling better.  I’m doing pretty good overall.   Had to leave work yesterday for first time ever for CD-related reasons… nothing drastic, but just needed to be at home by my own toilet! Take care! Carla

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Hi guys, Thanks for the welcome when I posted "New to group" the other day. Hello to all those who E-Mailed me.  Will get back to all if I can. Just a note regarding antibiotics.  I read a message from only antibiotic that magically makes all of my gut pain symptoms disappear!  I’m already on a pretty low-residue diet ie,No fruit, although the odd peach in our Summer is OK if very ripe.  I also don’t have much in the way of vegies either.  I used to eat a lot of pasta which breaks down fairly quickly but of course it’s full of wheat and gluten.  It’s really a case of the lesser of two evils… My last barium (only 6 months after 4th ileostomy in Nov 97) revealed active Crohn’s in left lower abdomen with a 7cm (21/2") stricture with an opening of about 5-6mm (<1/4") with an adjoining distended region and of course the fistulae in my main wound starts in there somewhere.  I had been getting progressively worse with the Crohn’s flaring just after I had put on weight and having a virus for a week when I lost 4kgs(8.8lbs) over about 5 days.  The Ciproxin made no difference after 2 days (yes it works that quickly) at this time so I stopped it.  I also took myself off the Azathioprine (Immunosuppressant) and at the same time got onto Revenol Antioxidant tablets and increased my Prednisolone from 7.5mg to 15mg.   Well everything slowed down that evening.  (I had been emptying the fistula bag 15 times a day and my normal ileostomy bag only twice). My Crohn’s symptoms really kicked in with such a big shock to my immune system as a result of the abovementioned actions. So after 2 days I went back on the Azathioprine. And back came the shits or should I say squirts.  I tell ya, the lower of the 2 fistula openings was like a water pistol.  I could have knocked a fly off the wall at 1m(3′).   Yeah, I still find it amusing…… Anyway,  I’m still off the Azathioprine, initially increased my prednisolone for over a week to 50mg.  I could only stand the extra back pain for 3 days and am now reduced down to 15mg.  The prednisolone jump did get rid of the Crohn’s pain (I describe it as gravel rash on the inside of my gut)  but I was still rolling around on the floor with obstruction type pain with only eating things such as Rice bubbles with soy milk for breakfast, boiled rice with chicken stock for lunch etc. The surgeon naturally assumed it was the stricture causing me pain, but I new that I shouldn’t be getting that amount of pain with that huge 5-6mm gap for the food to go through.  Remember my last surgury involved 12 strictureplasties, with gaps as small as 1.5-2mm.(<1/8"). So I went back on the Ciproxin, and within 2 days I was eating like a horse with very little gut pain ( all low residue food of course).   The back & neck pain, crunch,crack,spasm  is always there though.   The only problem with Ciproxin is that after a week or so the side effects I get such as pain in ligaments and cool burning sensation in the hands and feet get so bad that I have to go off it.   Then I usually go a bit off in my gut  for 2-3 days and then the gut pain gets a little or lot worse again. One of the things that I am now taking however is 2 high potency (odourless) garlic tablets per day, aswell as a Siberean Ginseng/Korean Ginseng combo.  I think that the garlic helps keep the bacteria at bay and one thing I do notice is that in combo with my Revenol (which also contains Gingko Biloba) helps with the Muscular Skeletal aches and pains!  I’m also having slippery elm bark powder once a day in between jiggling tablet takeing for maximum absorption.  Of couse all of these natural products aren’t cheap compared to commercial prescriptions which I can now finally get cheaper through government subsidisation. NOTE. On the subject of other antibiotics, has anyone out there ever taken Clarithromycin.  I asked my specialist (who I have very little faith in) about it and he said they were doing trials here.   Aparently it is used for lung inflammation so it may also act on the M.Paratuberculosis bug which is apparently present in cows milk and Crohn’s/Ulcerative Colitis patients but not bowel cancer patients.  I read somewhere that this bug can even survive homogenisation. I’m sure that a contributing factor in the early development of my Crohn’s 1970/71 was that I have a bad gene combination and I was never breast fed! ( Which of course builds up the ol’ antibodies )   I was my Mum’s first child and 91/2 lbs (ouch!).  I should’ve grown to be about 6′2" going by parents & brothers height ( at 25 he developed Ulcerative Proctitis, lucky bugger!), he had already done his growing.  I finally actually grew up to be nearly 5′8", and I’m glad now that the doctor’s decided against giving me growth hormone, which they nearly did, and in fact one of my primary school friends had it (growth hormone taken from dead people) and now has Kreutzfelt Jacob (spelling?) syndrome.  And apparently he’s still shorter than me! Yes I know it’s been a bit of a waffle, but I’m having the best day I’ve had in a couple of month’s so I’ve just kept typing.  I’m off to see the X-Files movie tonight (Half price Tuesday over here). Hope you can find something in my anecdote helpful, amusing…… Cheers Craig

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Question:

I have Arthritis from Crohns-colitis. I had some Percocet left from a surgery and I used this when the joint pain has been severe. At My appointment today My GI doctor gave Me a perscription for Darvocet N. He said that Percocet is a narcotic and would not give Me this. Has Anyone else used Darvocet and if so does it work as good for pain as Percocet. I do not have the money to fill the perscription for a coupe weeks and I am worried that I will not have any medicine for when I really need it. (I only use the pain medicine about two pills a week. Thanks,Jackie

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I have Arthritis from Crohns-colitis. I had some Percocet left from a surgery and I used this when the joint pain has been severe. At My appointment today My GI doctor gave Me a perscription for Darvocet N. He said that Percocet is a narcotic and would not give Me this. Has Anyone else used Darvocet and if so does it work as good for pain as Percocet. I do not have the money to fill the perscription for a coupe weeks and I am worried that I will not have any medicine for when I really need it. (I only use the pain medicine about two pills a week. Thanks,Jackie

I was given Darvocet after my surgery and I still have quite a few left. I have found that it is effective as a painkiller. However, it is most effective if you take it very soon after the onset of pain. I’ve been told that if you wait too long after the pain starts, it is useless.

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I have never been on percocet but did have an sensitivity to darvocet.  I was taking it for my Crohn’s pain one evening(first time I tried the stuff) and a few hours later I was being rushed to the ER for hyperventilation, mild seizures, and a temp of 104.  I am also allergic to demoral and understand that these two drugs are closely related.  I am under the impression that darvocet IS a mild narcotic but I could be wrong.  Call your pharmacist to find out, you can also get a price check and possibly only fill 1/2 your perscription if you really need it soon. I know what it’s like to be in a bind.  Also, if you go through KEYWORD: HEALTH, scroll down to digestive…,then scroll down to bowel disease, and at the very bottom of the web page there is a green button for DRUG INFORMATION.  you may find some help there.  GOOD LUCK! p.s.  Before all the problems with darvocet–it did really help with the pain–it pretty much put me out of commission for awhile, I slept for quite a bit.  I was fairly numb–this is why I think it may be a narcotic–but I was also sensitive to it so it may have effected me differently–Let me know what you learn and hope it can help. Sincerely, Heidi – Hide quoted text — Show quoted text – My GI doctor gave Me a perscription for Darvocet N. He said that Percocet is a narcotic and would not give Me this. Has Anyone else used Darvocet and if so does it work as good for pain as Percocet. I do not have the money to fill the perscription for a coupe weeks and I am worried that I will not have any medicine for when I really need it.

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I have Arthritis from Crohns-colitis. I had some Percocet left from a surgery and I used this when the joint pain has been severe. At My appointment today My GI doctor gave Me a perscription for Darvocet N. He said that Percocet is a narcotic and would not give Me this. Has Anyone else used Darvocet and if so does it work as good for pain as Percocet. I do not have the money to fill the perscription for a coupe weeks and I am worried that I will not have any medicine for when I really need it. (I only use the pain medicine about two pills a week. Thanks,Jackie

If I’m not mistaken…isn’t Darvocet a narcotic????  I thought it was anyway…. Peanut

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writes: I have Arthritis from Crohns-colitis. I had some Percocet left from a surgery and I used this when the joint pain has been severe. At My appointment today My GI doctor gave Me a perscription for Darvocet N. He said that Percocet is a narcotic and would not give Me this. Has Anyone else used Darvocet and if so does it work as good for pain as Percocet. I do not have the money to fill the perscription for a coupe weeks and I am worried that I will not have any medicine for when I really need it. (I only use the pain medicine about two pills a week. Thanks,Jackie

I have arthritis and CD too, also mutliple sclerosis.I have a LOT of leg cramps from the MS.  Maybe you can get your doctor to give you tylenol 3, which is a mild narcotic. I couldn’t live without it. Darvocet won’t even help menstrual cramps or a headache. maybe a hangnail.  This is junk given to women to shut them up.  I had an emergency room doctor try to give me Darvocet for a broken foot!! I argued for 10 minutes til he got tired of me and gave me tylenol 3 (with codeine) although only 10, the jerk! Darovcet is shit basically. Kathi

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writes: If I’m not mistaken…isn’t Darvocet a narcotic????  I thought it was anyway….

Yes.  At least according to my PDR. Nancy

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