Chronic Pouchitis

[azure77]

I had my colon removed in 2004 because of severe ulcerative colitis.  My surgeon was able to perform a Restorative Proctocolectomy, so I have an internal J-Pouch.  Life with the J-Pouch has been tons better than with the rogue colon, but it has never been 100%.  My doctor and I have tried all kinds of medications to get it to calm down, Flagyl, Amitriptylin, Glycopyrrolate, Xiflaxin.  The only thing that has seemed to help was Ciprofloxacn, which then stopped working after a time and now works again in combination with Tindamax.  My surgeon would prefer me not to be continuously on two antibiotics and I would certainly prefer that too, but the alternative is not fun, cramping, constant bathroom visits and the worst is leakage at night.  Does ANYONE have any remedies, natural therapies, a different medication to suggest, really anything?  I have also tried a course of probiotics while not taking medication and my pouch just continued to get worse.

[TrudieC]

Have they looked at your diet?  You may be eating too much fiber, sugar and/or spices.  I've had my pouch for 15 years and definitely the first year or so was tough but I eventually got into the habit of eating bulking foods (oatmeal, marshmallows, apple sauce, meats, eggs) and avoided heavy fiber foods and spices.  Eventually I've been able to eat anything but occasionally if I have too much spicy or too much salads or sugar I run into problems.  I assume you take an anti-diarrheal?

[azure77]

Thank you for your response.  Unfortunately, even when I had Ulcerative Colitis, diet never seemed to make a difference.  However, I do avoid spicy foods because they do bring pain.  As far as anti-diarrheals, I have tried Imodium (immodium) but it seemed to make me feel like I had a blockage or constipation, but maybe I was taking too many or something.  
Thank you for the thoughts; I'd definitely appreciate any more you might have.

[TrudieC]

There are some other prescription drugs your doctor can give you - antispasmodics.  Do ask for those.  They can make a big difference.

[cka58]

has anyone ever gone back to illeostomy after having on going problems with j- pouch ? need advice,i am thinking about removing j pouch,, never get enough sleep,,up 5-8 times a night,,always looking for bathrooms, anal area always sore ,,on going hemroids, occassional fistuals, on antibiotics ,,just wondering if life is any better with out j pouch  ,,looking for answers,,,please someone HELP
Thanks cka58

[niki26]

I have UC and Ive had a j-pouch for 6 years now.. And have had nothing but problems. I had pouchitis which you talked about and have been put on the same antibiotics for years at a time and nothings worked. My doctor is now going to try the drug 6mp because I have fistula's and ulcers. He said if that doesnt work the drug called Remicade would be his 2nd option. Maybe you should ask your doctor about those two drugs as well. Cka58 I feel your pain its like a never ending battle with UC. Trudie thats strange you mentioned you felt like you had a blockage after taking Imodium (immodium) because after my surgery maybe 6 months after they started me on that and I ended up getting a blockage which they had to go in and correct. I always thought it was from that drug as well. If you want to slow down ur bathroom visits i'd say take metamucil. Hope everything works out for the best...