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I am 10 years post surgery with a pouch. Because of the amount of fluids/output I have daily it has affected my kidneys. I now have stage three kidney disease. I was just in the hospital for 4 days with severe dehydration. I started on budesonide but had a bad reaction. Now I need IV hydration twice a week and Entyvio every 4 weeks. If that doesn’t work they have mentioned dialysis and/or an osteomy to replace the pouch. Looking for help, guidance, support.

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Wow.  That is a terrible story.  I am so sorry for you.  Are there any options left to slow the output down?  Have you been to J Pouch/gastrointestinal experts like Cleveland clinic or other doctors mentioned on this site.  Dr. Feza Remzi at NYU is my surgeon and he is great.  I assume you have been around already.  It is unusual for output to be so high that you get kidney damage.  I know that dialysis is a big deal.  Let us know.  I would rather go back to an ostomy personally than get dialysis.  Was your output this high with you temporary ostomy?

Is it right that your hight fluid loss is caused by chronic inflammation / pouchitis as the header suggests? You're writing very little about your situation and meds you already tried.

So how many BM do you have per day, is it mainly liquid?

Have you tried antibiotics? For me it is the only thing that helped to control pouchitis in a really significant way. I also take budesonide (Entocort) for 7 years now, with hardly any side effects. But it only calms down inflammation a little.

There are many people here that report Remicade helped them to be free of pouchitis. So this might be an alternative in case Entyvio does not do the job.

Have you had your mineral blood levels checked regularly? With increased fluid output there is also a considerable loss of minerals. For me it has always been sodium to take care of, so I take salt as a supplement, from 1...3 g per day depending how bad diarrhea is.

Thank you for the replies. I have 8/10 bm per day sometimes very small because I sit down to pee and there is always some stool. My doctors are at Weill Cornell and my surgery was by Dr Jeffrey Milsom who is supposed to be one of the best. I have been on Remicade, Humira and some other stuff prior to pouch. After pouch I was on antibiotics for a while but then seemed to be okay until recent episode. While in the hospital they did a pouchoscopy and found inflammation so my doctor has obtained insurance approval for Entyvio every 4 weeks instead of 8. She mentioned trying Stelera if that doesn’t work.

Dr. Milsom was top notch - heard he retired.  Have you tried bowel slowing medicines Imodium or Lomotil?  That could help you retain the water.  Going 8/10s is not such an alarming rate to cause such dehydration.  Some on this site go 12+ and I have not heard a ton of kidney problems.  Please let me know if you have tried bowel slowing agents.  I think it could really help, but I would bet that you would have tried them already.

I agree that 8...10 BM is an increased rate, but I had to deal with that for many years myself with chronic pouchitis and it should be no problem if you drink enough.

If you say "stage three kidney disease", is this an acute / singular eGFR value for kidney function when you needed to go to hospital? I had some episodes with partial kidney failure in the past 17 years when I had severe diarrhea and circulatory problems. But that was only until my health got better with infusions and antibiotics treatment in hospital. It was only a temporary deficiency.

I would ask your doctors for an antibiotics treatment with Flagyl + Ciprofloxacine also to treat pouchitis. That helps very quickly, for me things always got much better within 1...2 days. And it is a standard medication for pouchitis.

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