I have 2 questions. I have had my j-pouch since 1998. I had some pouchitis in the early years but had been doing great and on no medication for about 10 years. I have been having pouchitis symptoms since April. My gastro did a scope in May and saw no pouchitis. He took some biopsies too and all was ok. So he has been having me take immodium and now lomotil. They are not working for me. I feel like I have pouchitis. Can I have pouchitis and it just didn't show in the sigmoidoscopy? I have not been with this doctor very long and am not confident in him. My original surgeon and the 2nd doctor were so good! How do I find a gastro who has treated j-pouch patients?
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Rebecca-
It's quite possible to have pouchitis symptoms that don't seem to match up with the pouch appearance during pouchoscopy. A 10-14 day course of Cipro or Flagyl might fix you right up - it's certainly what I would try.
Finding a GI with plenty of pouch experience can be tricky. Are you in an area with many GIs, or a smaller number? Are J-pouch surgeries performed in your area? If surgeries are performed locally then there are likely to be plenty of experienced GIs. If f not then it's harder. Is there a teaching hospital a reasonable drive away? That's another way to find deeper knowledge. Good luck!
Thanks, Scott! Your reply made me feel better!!! I had my surgery done at University of Michigan and I live in Detroit. I am going to try to find a j pouch doctor around here otherwise go back to U of M. I had been doing so well, it wasn't a problem, but now I know I need to have a good doctor, ready and knowledgeable when I need one!
I am still working with the same doctor until I can get a new one. He has me using a hydro cortisone suppository 2x a day. They were helping some.
Now he has me starting on 1 uceris (budesonide) (9 mg) a day which is a glucucorticosteroid for patients with active, mild to moderate ulcerative colitis. Does giving me a steroid for people with ulcerative colitis make sense? I am very hesitant to start a steroid with bad memories of prednisone.
Thanks,
Becky
I just can't tell what he thinks he's treating, Becky. A steroid suppository, or even an oral steroid can make sense in certain cases (e.g. difficult cuffitis). It wouldn't be my first choice if an antibiotic hadn't been tried. In the meantime, if he doesn't know enough to hazard a diagnosis or try anything but steroids, you could (if you haven't already) add soluble fiber (e.g. Metamucil, Benefiber, etc.) and/or VSL #3, and perhaps get some improvement. You could even try drastically reducing carbohydrates, which for some people is enough to manage pouchitis. But the sooner you get to a new doctor the sooner you'll have a diagnosis and more specific treatment, I think.
Becky, have you or your doctor considered bacterial overgrowth? The symptoms are the same as pouchitis, without the endoscopic findings of pouchitis. But, the treatment is the same: antibiotics.
So, like Scott suggests, antibiotics make sense. Steroids only make sense (in my mind) when there is evidence of inflammation.
Have you read Dr. Shen's article in the "sticky" thread at the top of the pouchitis forum? It is very comprehensive.
Jan 
Ok, thanks for your input. I think I will call tomorrow and ask what his diagnosis is before I take my first oral steroid. I had cut back on my carbs some the past few weeks and started the FODMOP diet seriously 2 days ago. Thanks again, and I will keep you posted.
Ooopps, caught my typo too late --- FODMAP.
Jan,
We must have been typing at the same. That is another good suggestion. I remember him saying after my scope in May, that my pouch "did look too bad." I really do not want to take steroids, unless of course I have too.
Thanks so much!!!!
Becky
SIBO is a relatively new diagnosis (but not that new). It is also associated with IBS and is why Rifaximin is now approved to treat IBS. The point is that we are more susceptible to it because we no longer have the ileocecal valve that kept bacteria from traveling "upstream."
http://www.ncbi.nlm.nih.gov/pu...erm=Sibo+ileal+pouch
Jan
In the 6 months prior to my j pouch surgery in 1990 my doctors tried drugs to alter my brain patterns as a last ditch attempt to treat UC before surgery. They didn't work and gave me the worst nightmares I can remember. After surgery I began to smoke cannabis and it has helped me enormously ever since. For you people at there that are staring surgery in the eyes and if things don't improve definitely get stoned. It will alter your brain patterns and it just may help. It definitely has helped me living with the pouch. This website tells of so many physical and mental difficulties experienced by so many. I guess it makes so many of us remember that things could be a lot worse. This advice about water is very sound. Washing and soothing after toilet visits plays a big part in our quality of life. I am always comfortable when I swim and I have been able to use it and paddling as exercise regularly during the last 26 years.
Sorry I just realised my post is on the wrong forum. Apologies