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Need some advice.  My husband had the jpouch surgery in 2007.  It’s been 13 years of hell to tell you the truth.  Since this past October he has no control of his bowels worse so than before.  He had his pouchoscopy in November which showed inflammation and inflammation at the cuff.  Has been on three different antibiotics since and nothing is helping.  When  he swallows his own saliva he has to run.  He’s been having accidents as well.  Does anyone have any suggestions?  He’s now 70 years old and will not go through another surgery.  We have been married 46 years and he is getting unbearable to live you.  We have a virtual with his doctor on Wednesday and I’m sure it will be another antibiotic.  If anyone on this forum has any suggestions it would be greatly appreciated.

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If he has tried various antibiotics with no success, the next line of treatment would be biological drugs- Remicade, Entyvio, Humira, Stelara etc. These drugs suppress the immune system response that's causing the inflammation. I was put on Remicade 5 years ago with very good success, and it's usually attempted first on J Pouch patients due to clinical data. This is a treatment option that should be discussed with your doctor.  

One thing I should note is that Remicade does take a while to produce results. It's usually administered 0-2-6 week intervals and then at 8 week intervals, although in your husband's case they might go 6.

Good luck.

Last edited by CTBarrister

Kathy, it’s hard to know from your post what he has and hasn’t tried, so plenty of this may be redundant. In any case:

  1. When antibiotics truly fail to manage pouchitis the next line medications are the biologics, as CT wrote, above. They give some folks their life back.
  2. If he has never tried antibiotics in combination please know that it can be a game changer. Flagyl alone never helped me, and Cipro alone was great until it stopped working. The combination, though, has served me brilliantly for 5-6 years.
  3. If he hasn’t tried a steady regimen of kegels then he is long overdue. We really ask a lot of our anal sphincters, and we need that muscle in fighting form.
  4. If he’s never tried psyllium or another soluble fiber source then it’s long past time. Particularly if his stool is liquid, which is hard to manage, psyllium will thicken it up to more of a porridge consistency, which is easier to manage. I take a full dose of the powder (per the package directions) with breakfast and dinner, and I have since my hospital discharge 18 years ago. Not everyone likes the effect, but everyone who’s having trouble should probably try it to see how it works for them.
  5. There are differing opinions about how to best use bowel slowers like Imodium or Lomotil. I prefer one Lomotil at bedtime (and occasionally before something challenging like a boat trip), while some folks prefer to use more.
  6. A short course of steroid treatment might help calm down the most acute inflammation. If he can’t tolerate holding an enema then oral prednisone (tapered quickly) might give him a head start.
  7. Does he have a good, knowledgeable gastroenterologist? 13 years of hell suggests that he might be overdue for an upgrade.


Good luck!

@Scott F posted:

A short course of steroid treatment might help calm down the most acute inflammation. If he can’t tolerate holding an enema then oral prednisone (tapered quickly) might give him a head start.

I agree for short term results, although I think Entocort capsules are a preferable steroid alternative to Prednisone as its mechanism of action is much more targeted in the bowel and, as a result, there are likely less side effects.  Like other steroids, he can be given the max dosage (which is 9 mg), and then slowly tapered off of it once relief is achieved.

In the past I did use Entocort aka Budesonide for a very bad flare, with great success.

Last edited by CTBarrister

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