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9 replies

Pouchitis or not?

A akteacherMember
Searched this site but haven't really seen the symptoms I'm experiencing. Thought maybe it was another UTI but the dr ruled that out today. Told her it might be pouchitis but since she is not GI & I'm seeing Dr. Shen next week she refused to treat it. Anyway, I've been experiencing low back pain, pressure in the pelvic area, some daytime seepage, and nocturnal incontinence. I've trid not eating anything after 7pm, just water. I haven't tried Imodium b/c I've had so many obstructions I'm afraid to bulk things up in case it causes another obstruction. The seepage & incontinence has been going on since Dec. 2012 but the pain/pressure is more recent. I do take 500mg Cipro on Mon, Wed, Fri but I've been on that since 1998. Maybe I've built up a resistance or it's just stopped working? Could this be a bad case of pouchitis or something else? Any help would be appreciated! I'm going to have to tough it out until I see Dr. Shen but the "what can it be" is worrisome to say the least! TIA!
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TE MarieTE MarieMember
What are you taking the Cipro for?
I'd suggest taking half an Imodium but if you are handling the leakage ok then tough it out. Has your frequency gone up? Fevers? Pain? Did she test you for c.diff? If you are having other problems like these ask her to order a stool test for you for c.diff. That's a bad bug that can be helped along with Cipro. It happened to me when I still had my colon so I no longer can take Cipro. I've had a couple of bouts of it with my j-pouch too so you can get it with a j-pouch. I was treated with Flagyl which is also used for Pouchitis.

I hope it is something like you need to see your Chiropractor Smiler
A akteacherMember
Many, many years ago my original surgeon put me on Cipro to avoid pouchitis. I believe I had a bout of it but its been so long ago I don't really remember what the symptoms were that made him decide to use it. I just know he said that I'd be taking Cipro for the rest of my life. At the time I guess I never questioned it, too new to the whole procedure. I've just always taken it & never had problems. I have since moved to AK & live in a village & don't really have a regular dr so I've had dr's/pa's refill & no one has really suggested anything else. I saw Dr. Shen this past Oct. & he did a pouchoscopy & found mild pouchitis but when I told him about taking Cipro since 1996 he didn't suggest stopping it or trying anything else. I see him next week & will most likely be scoped again, so will bring up the Cipro issue with him again. Anyway....no fever/chills, nothing other than the symptoms
I mentioned. Guess I'll have to see what Dr. Shen thinks. Thank you for responding!
J jeaneMember
This could be mild pouchitis. Sometimes I get the pelvic pain when I am emptying my pouch and I always get some type of nighttime issues when pouchitis flares and lower back pain.

I would question the cipro as they had me on it for a very long time and it gave me severe muscle aches. I had to stop it and since I did, the pouch seems to be fine. I am just concerned about long term antibiotic use in general, especially cipro, although I know there are many patients who manage fine on it long term. Good luck. I am sure Dr. Shen will have something to offer you.
TE MarieTE MarieMember
Dr. Shen might have thought it was working well so why change it at that time. I thing Jeane's right and wish you the best. Can your local PA's give you something for pain? I take Norco, 10/325's and they help with my abdominal and the back pain associated with it. You might do well with half that dose.

Please let us know what happens.
A akteacherMember
TE Marie: I'm visiting family in LA now until I see Dr. Shen next week. I saw a dr here who I have seen a few times (when I visit here) and was a little surprised that she wouldn't order anything for me. However, she does know about my pending visit with Dr. Shen & said to wait & see what he will do. Guess it is probably best to do that anyway. I've had worse pain so I think I'll just tough it out until I see him on Tuesday.

Liz11: I have only emailed Dr. Shen twice (after my visit in Oct) & he did respond pretty quickly! I figured since I'm seeing him Tuesday I can wait to discuss this then.

It will be nice to see him & get some answers, tho. The pain was becoming bearable but tonight seems to be worse. I think it's a pain pill (thank God I have some) & heating pad night!

Thanks for everyone's responses!
TE MarieTE MarieMember
I thought you were up in AK where you only get to see the PA's. Sounds like you might as well be as the local doctor won't help! I was going to say can't she at least prescribe you a few pain pills until you get to CC...but it looks like you have that covered. Are you sure you have enough? I know we are never to take NSAID's but if you are in horrible paid and can not get anything else 800mg of ibuprofen is the prescription dose and will help you. Make sure you eat a lot with it or drink a lot of milk. Forgive me if you already know this - I just hate to see someone in pain.

Hope all goes well Tuesday. I'm going to Mayo Wednesday and Thursday and I need lots of help so hope they can give it to me!
A akteacherMember
I am visiting family for a few more weeks before heading back to AK. Once I get back home I will be back to no medical - only health aides. The dr. here would not treat the pouchitis (who knows why) but thankfully I did have some pain pills that I take with me everywhere but these are usually left over pills from previous hospitalizations & I use them VERY sparingly. Unfortunately, I can't take ibuprofen, motrin....only tylenol. That's the reason I save/horde any pain pills I happen to acquire along the way. Today has gone much better, just twinges of pain - comes & goes. Weird! I hope things can be figured out once I see Dr. Shen. Good luck with your trip to Mayo!! Hope all goes well with you, too!
TE MarieTE MarieMember
I'm glad you have pain pills saved. I know we aren't to take NSAID's but if things got really bad I have taken them before for my migraine headaches. Fortunately I'm on daily medication to prevent them and it works for the most part at keeping the bad ones away. Enough about me! I'm glad you get to see the top guys and hope they help you so when you go back home you don't have to rely on your PA for everything anymore. I suggest you get their email address or direct telephone call to their office or nurse!

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