J pouch issues

Hello Boston,

Your experience is very similar to mine. I was treated in sept 2021 with two rounds of cipro which helped. October 2021 pouchoscopy showed no pouchitis  and very mild cuffitis which was treated with canasa and anucort suppositories.

in December I was diagnosed with SIBO which can also cause lots of discomfort and frequency.

I just met with my GI doctor this morning who wants me to try less loperamide that is working great for me. If symptoms return we will treat the SIBO with the xifaxin antibiotic.

what did the scope results show for cuffitis. You said some inflammation but if he took biopsies, that pathology report will tell you the results if you have cuffitis (colitis of the 2cm rectal cuff)

ask the doctor how the pouch looks anatomically. If he say it looks good with no strictures, scar tissue or narrowing, you can conclude that the surgeon built your pouch correctly. If you are like me and others. It might take up to a year for your pouch functionally to reach optimum levels.

please do not panic. Countless people here have had our experience. Unfortunately we have to give it time, which I did not want to hear while suffering.

Hang in there, we are here for you!

eric

Cuffitis is commonly treated with mesalamine by suppository or enema. It takes a while to work, but you could ask your GI if Canasa suppositories might help. Rectal steroids can help a bit more quickly, and might tide you over until the mesalamine starts working. Options include Uceris rectal or Cortifoam.

In the meantime, are you using any bowel slowers or fiber?

Be careful with how you take antibiotics. (for Pouchitis)

Many people have experienced the same as me, and their effect is on a curve, whereby they are very very effective for the first few days, and progressively get less effective over time, until the point a lot of people were back where they started with all the pain, inflammation, etc, even while taking the pills, so the worst of both worlds.

I am not the only person to experience this, and a lot of folks have managed their antibiotic use better than a dumb prescription for a set period of time. The general rule is less is better IMO, and as soon as I started to feel better, I would stop taking the cipro and metro, then even if only a day or two later, I started to feel worse again, I would start taking it again.

Eventually the gap between antibiotic requirement went from hrs, to days, to weeks, to months, and at the best period in my life was 12 months without pills.

Naturally I am not a doctor, nor does medical advice work for everyone, we are all different, but I am definitely not the only person who took Antibiotic use into their own hands, and managed it far more intelligently than the general medical profession, and I might add, with results good enough to take me from about to request a stoma again, to ~19 years later in pretty good shape.