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Hi- looking for some peoples advice/experience here.

UC with J-pouch diagnosis over 11 years ago.  Quickly developed chronic pouchitis and was put on Cipro permanently.  Worked pretty well, but recently been having a lot of trouble, have had two blockages, and stomach has been a mess with overnight accidents, butt pain, etc.  Doctor is now thinking it may be Crohns and I am having an MRI in a couple of weeks.  In the meantime, I am struggling.  I am in my 3rd steroid pack (methyipredinisolone) and will probably need to stay on them until after MRI So that's over a month on steroids (5-6 packs) while I wait for thoughts on next steps.  Is that really bad? I know steroids are not great for you.

Also, I am scared that I am going to have trouble feeling any better and I will end up getting very sick like I did when I was younger.  I can't stay on steroids for obvious reasons, and besides when I had UC they just stopped working too.  I got so sick back then, had tried Remicade, it only  worked for a few months, and ultimately had my colon removed and got a j-pouch. 

Regardless of the diagnosis of Pouchitis or Crohns, whats going to happen to me now that steroids are no longer working!

Thanks, any experience and suggestions welcome on where I go from here and what to expect....

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Figuring out whether the blockages are related to the pouchitis will be important in figuring out how to proceed. It’s common for Cipro to lose effectiveness eventually - when it happened to me adding Flagyl did the trick to manage the pouchitis, but I wasn’t also getting blockages. If the blockages are near the pouch entrance then antibiotic adjustments may be sufficient, otherwise looking for an effective biologic is likely to be more effective.

Short-term steroids are generally not a big problem, so I wouldn’t worry much about them if you aren’t having significant side effects. They hopefully will buy you the time to work out an effective long-term treatment.

Many moons ago I was given remicade. Oh man. I was sick.

Remicade worked so well I was actually amazed to be able to have solid bowel movements. I remember the feeling. Still.  It was amazing.

Well. About two years into treatment which was still working I had to have minor hernia surgery. I was told I had to stop my remicade treatment.

Well. It never worked again.

I tried humira. Stelara. Neither worked and I ended up where I am.

I'm fine with it. But I did find out about a decade after my hernia surgery that I didn't have to stop my remicade treatments. The surgeon who did my hernia said I had to stop.  I had no feelings either way. Mad? Too late.

That's why I was wondering as I posted above.

Sorry this is off topic and I certainly hope Liz can find a solution. Because it's miserable and no way to live.

R.

So to answer some of the questions in the chain.. Yes, have tried other antibiotics none worked except for Cirpo.  Also was on Remicade before I got the J pouch - it worked for a few months and then no more.  Since they thought it was UC we did the J-pouch.

I am open to biologics if they help. I am just scared that nothing else will help.  Anyone have luck with the biologics when either antibiotic resistant pouchitis or rediagnosed to Crohns?

The term "broad spectrum" antibiotic means it covers a lot of bacteria but not all. Cipro and Flagyl are from completely different antibiotic families, and work on different bacteria. It's common sense that using them in tandem ought to provide better results than using either one alone, and that was my experience as well as Scott's. A lot of people unfortunately struggle with the side effects of one or the other, particularly flagyl. If side effects are not an issue with either drug, there is no good reason not to use both in tandem in treating stubborn long term chronic pouchitis. I did for many years, before going on Remicade and having it work as well or better than antibiotics did.

There are tons of other biologics besides Remicade- Entyvio and the newer Skyrizi just to name 2.

Last edited by CTBarrister

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