I've seen a number of posts on this topic, but I know that every person's situation is unique. I'm going through workup currently of possible Crohn's after ~6 years of living with a J Pouch following original diagnosis of UC. Still going through tests, but my GI seems Crohn's diagnosis is likely. That being said, my only issue is a small fistula and pouch 'tightness' both of which are relieved by antibiotics. I had a recent pouchoscopy which showed ulceration of the pouch. I wanted to post and ask what others experienced if diagnosed with Crohn's after J Pouch and the 'progress' of their disease. Did you start off with a biologic? Remain controlled with just antibiotics? Or did you elect for a pouch removal?
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I have had a J Pouch for 25 years and have had chronic inflammation in Pouch for 23 years and above the Pouch for the last 10. I carry a tentative Crohn's diagnosis. Treatment with antibiotics for 23 years and added Remicade the last two, which has been effective in controlling but not eliminating the chronic inflammation. The Remicade has worked well in controlling the Pouch inflammation but not as well on inflammation above Pouch where there are scattered ulcerations.
Why would you consider Pouch removal if treatment is effective? You have what you have and calling it a label doesn't change anything if treatment works. Don't be concerned with the diagnosis, be concerned about whether treatment works. Mine has worked for 23 plus years. I am not losing this pouch.
Hi NUmeroaro,
I have been dealing with a very similar situation expect mine is ever more limited. I would call it a cuffitis rather than pouchitit however antibiotics work wonders for me as well. I got a J-pouch 20 years ago and had no issues for 10. Then I started experiencing a lot of tightness at the actual anastomoses connection. (But it took me years to figure out that was what was going on) In the meantime, I also developed 2 fistulas which can get inflamed a lot even though they drain well. I too have had luck with flagyl and especially cipro keeping everything much quieter. I have a biology background and the success of the cipro makes me wonder if there a microbiata component to my symptoms but i haven't been able to find any concrete answers with my own research....
I actually do not have problems with the actual pouch, things in there look great. I think that could also be because I have moved to a gluten free diet which also improved my overall issues A LOT but not completely. BTW i was negative for gluten anitbodies when tested. My GI says that whenever GIs see fistulas show up they tend to move the Dx towards chron's and we did did try humira initially with absolutely no response but things could be different for you since your pouch is more involved.
I have also been told that my next surgical option is all pouch removal because there tissue at the anastomsis is "very unhappy" which doesn't give the surgeon much to work with in reconsrtucting anything. She said we could try but she is sure we would end up at pouch removal eventually with a lot of wear and tear on me from surgeries.
So... I am in a similar place to the other reply in that I will continue to manage things with medicine for as long as a possible to keep this pouch in place. I just wish they would figure out why antibiotics helps so many people so much. I have been on them so long I can't imagine I have much microbiota left but obviously the cipro is continuing to kill off something problematic or its working in a completely different way
JAS,
I have rotated cipro with flagyl, xifaxin, amoxocillin and tinidizole and other antibiotics for 23 years. If you do not rotate from one to the other every few weeks and stay on cipro problems will develop based on my 23 years experience.
The biggest problem is that cipro kills your skin bacteria and thus makes you vulnerable to fungal and viral infections, most frequently seen as yeast infections and warts. Your skin is your body's first layer of defense against infection. As my dermatologist explained, when the bacteria is killed the other microorganisms in your skin (fungi and viruses) fill the empty spaces and these overpopulations cause the infections.
In 2010 while on cipro and entocort for an extended period of time, I broke out in what was described by my dermatologist as the worst breakout of yeast infection and warts (which are viruses) he had ever seen in 30 years practicing dermatology. I was treated for that episode, and thereafter became very careful about rotating. What got me better in part was rotating to xifaxin for 3 weeks as xifaxin is not systemically absorbed and thus gives your skin bacteria a chance to repopulate. Although not covered by all insurance plans I HIGHLY recommend you keep xifaxin in your rotation for this reason.
Other than that I have had no major issues using antibiotics for 23 years continuously in a systematic rotation. There are many to choose from- pick the 3 or 4 that work best with the least side effects, make sure they are not too similar (never rotate from cipro to levacquin for example as they are both fluoroquilones) AND ROTATE every 2-3 weeks.