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.

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.

I think both responses are excellent.  I will also say that I have been on many courses of Prednisone and Entocort for flare ups over the years.  Entocort worked just as well as Prednisone for me and with less side effects and has worked rapidly (24-48 hours).

I am sorry dear!!! Has your husband tried Mesalamine suppositories/ enemas??? Or Biologics???

So sorry for your husband must be horrific. Flagyl and prednisone both oral and suppositories may help and remicade.
They all helped me and my 31 year old pouch.

Good luck. I really hope he gets the relief you both deserve to be happy. 💕💕💕💕💕