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Hi there. Looking to maybe get anyone’s experience here. I have a very nice gi that I just started working with a couple of months ago; but he is not experienced with pouches unfortunately I think I am his first one. I am 10 months out from takedown. Sorry this is long I’m just at a loss on what to do.

That being said, I started going to him because I was having lots of pressure and discomfort and sometimes spasms rectally. It was enough to wake me at night. No increased urgency or frequency or bleeding etc just this awful pressure and sometimes having to strain to empty then still having this pressure anyway.

While waiting for tests I did 2 weeks Rifaximin with really no change. So he did ct scan and Pouchoscopy in December, both showing Cuffitis and nothing else. When the biopsies came back they showed inflammation in the cuff as expected, but also mild inflammation in the pouch even tho it looked good on scope. So he said I have pouchitis and Cuffitis.

I went on 2 weeks twice a day each Tindamax and hydrocortisone enemas and felt better literally the first day. I felt great that whole two weeks. Unfortunately it all returned within a week of stopping, although to a lesser extent.

Then we moved to mesalamine enemas. After a week I noticed these were making me worse. Still had the pressure but now increased urgency and frequency. Stopped those and that all went away, except the original pressure issue. I told him I don’t think my body likes mesalamine. But he said we should try oral mesalamine anyway. I did, and after 3 days it made me sick as a dog. So now I’ve stopped that and am on nothing. The pressure and straining remain an issue.

So today I tell him I’m stopping the pills and he tells me I’ve exhausted all my options and probably need a biologic. This seems like a big jump. I’ve tried two short term antibiotics only.  Apparently I can’t do mesalamine in any form, I get that is limiting. I know hydrocortisone isn’t long term either, but is that really everything?

I will say I can’t do cipro because last time I took it I got c diff which was just 4 months ago so fairly recent. Flagyl and augmentin make me sick. So I know the usual options are off the table for me of cipro, Flagyl, Canasa.

I’m not opposed to a biologic if that’s what I need but again this just seems like a small amount of time dealing with this and a large jump. I see people taking longer terms of antibiotics etc.

Anyone have any advice here? Should I get a second opinion or does this seem reasonable? Thank you if you are still reading all of this!

Last edited by Cb2009
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Since you felt better when you added two medications (Tindamax and hydrocortisone) it could be very useful to figure out which of the two was helping you - it's possible but unlikely that you need both. Why not try the Tindamax again to see if that alone does the trick? If not then budesonide enemas might be preferable to hydrocortisone, since there is less systemic absorption.

A small amount of pouch inflammation is very common, so it's hard to know if yours needs to be treated (if that's not the source of your symptoms). Also, Flagyl is a more common first line antibiotic choice, but since Tindamax may have helped I'd stick with that during the experimentation process.

Good luck!

Thank you Scott! This is the problem, I asked for a longer round of one or both of those meds and was told 2 weeks is the maximum he would do. Which is what I find weird because I see people here all the time on weeks, months, even years of antibiotics. I would just think it would be a safer initial route to try than biologics right away?

Also I can’t handle Flagyl it makes me sick, that’s why the Tindamax

Hi cb,

Cuffitis started for me very quickly after takedown and I have been on canasa suppositories ever since with good success.

I am so sorry that mesalamine does not work for you, as that seems to keep my cuffititis in check. My recent scope showed no inflammation but the biopsies still show microscopic colitis in the cuff.

Having said all that, I am not willing to ever have surgery again, so I will do whatever it takes to avoid a repeat of dysplasia in that area.  I even asked my GI if we should be stepping up the therapy to a biological; he said no, the canasa is keeping the inflammation in check.

I see a doctor at a specialty center at a university hospital, so I am very comfortable with his treatment plan and recommendations.

If I were in your situation , I would absolutely find someone more experienced with pouchers.  Since I have not used antibiotics for my cuffitis, I have no opinion as to their efficacy. But since you are suffering you should have an ally working with you who has seen enough pouchers to know what works in your situation.

Last edited by New577

For me mesalamine also had side effects like a foggy brain and light fever. My pouchitis / cuffitis was kept in check with budesonide (Entocort) for many years. I still take a small dose of 3 mg every day. It takes effect mainly locally at the end of the small intestine and pouch. Yet it has only a calming effect for me, it does not heal inflammation.

I also had c.diff from taking Cipro & Flagyl, but I continued with those meds after treating c.diff with another antibiotic, because they always helped me best. I reduced the dose (only once a day at lake evening) and added a probiotic in the morning.

So I would suggest trying an antibiotic that you can tolerate well, perhaps even Cipro (in combination with a probiotic?). As you are already dealing with cuffitis for some time, you may ask your GI doc if a treatment for at least 3 weeks would be appropriate (as the recommendation for an initial treatment is already 2 weeks).

Budesonide orally (capsules) or as an enema is also an option.

Doctors who aren’t familiar with J-pouches sometimes have no idea that long-term antibiotic treatment is a reasonable choice. If they can’t be educated (e.g. by handing them a journal article) then it may be necessary to find a more knowledgeable gastroenterologist.

My doctor was more open minded, and we learned together. He actually gave me a copy of a review article about pouchitis, but I had to point out to him that the article suggested that combination antibiotic therapy may be necessary - he just hadn’t read it carefully enough.

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