Just wondering if people with chornic pouchitis that isn't responding to antibiotics have tried Uceris? Does it help you?
Original Post
I haven't heard anyone talk about it so just looked it up. It looks like a steroid. Do you use it for UC?

Pouchitis isn't usually treated like UC. I see people rotating antibiotics to control pouchitis on here.

Cuffitis is treated with Mesalamine and/or Hydrocoritzone which are medications used to treat UC in suppository form. This is because if you have the most popular double stapled j-pouch surgery there is a small percentage of us that get UC, called cuffitis, in the cuff of our j-pouches. I've read it's 4% of UC j-pouchers. It seems like more on here as this is a support site and people post here when they are having problems.
I didn't know what it was... Someone said it was a corticosteroid with a coating that lets it get to its desired location (the colon) before it releases, maximizing its ability to decrease inflammation right where needed (again, the colon). I would suppose, though a pharmacist would have better knowledge, that its coating would likely not allow the small bowel pouch to absorb it, hence leaving it kind of worthless to us. And pouchitis isn't normally treated with steroids, anyway, like TE Marie said.
The OP still has her colon, so is considering trying Uceris to avoid colectomy. Uceris has the same ingredient as Entocort (budesonide), that some here take for pouchitis or Crohn's of the pouch. The difference is that Uceris is delayed release for treatment of the colon.

So, I'm not sure if it is a long term solution for her, as it is not a replacement for steroid treatment. It is just for induction of remission as far as I know and can still cause adrenal suppression when used long term. Could be worth a try though...

Jan Smiler
Jan, I have a nodule on one of my adrenal glands. Could the demon drug prednisone have caused that? Does taking other steroid medications have any affect on making it worse?

Sorry for straying from the subject. This is something I found by reading my CTscan reports, along with several other items that I was not told about by the doctors. When I inquire they are not concerned.
Doubt it. Steroids suppress the adrenals, basically reducing their ability to respond to pituitary stimulation. But, have you been prone to panic attacks, spurts of hypertension, tacchycardia, sweating, that sort of thing? If so, maybe you need to be evaluated for pheochromocytoma, which is a hormone secreting adrenal tumor. It is not cancer (at least not in most cases). But, that is what they thought I had, even though my 24 hour urine for catecholemines was just slightly elevated. That was why I wound up having an adrenalectomy (an adrenal tumor was seen on CT). Turned out it was not on my adrenal gland, but was just a ganglioneuroma in the same vicinity. Those can secrete hormones too.

Jan Smiler
Yup as Jan mentioned I am considering Uceris for my colon but was wondering if people with pouches could use it too. I asked Jan this already but I wonder what other think - if I do end up doing surgery, I know that people who were on prednisone going into surgery can have higher complications or struggles with surgery becuase of the prednisone. Would this be the same for Uceris which is not a systematic steroid and is mostly concentrated in the gut (although there is some systemtic exposure I believe)

Also, Jan - was your ganglioneuroma cancerous? That and adrenal gland removal? All that sounds scary! Any idea on why all that happened to you?
I was on high dose IV steroids at the time of surgery, and did ok, but know that's a concern. I'm guessing it probably won't work for J pouches. I can't digest anything enteric coated, and its time-released properties make me think it'd go right through me untouched, without my large bowel.
I have big time panic attacks but none of the other symptoms. So they are probably right and it's nothing to worry about. Thanks Jan.

It is my understanding that long term prednisone use softens us internally. I'm sure I didn't say that right - sorry everyone. This may lead to 3 stage surgeries. There are some who are on prednisone at the time of surgery and taper off after it.
Last edited by TE Marie
Uceris would not pose the same dangers as prednisone during surgery, because it is topical, as opposed to systemic. It would be essentially the same as using hydrocortisone enemas before surgery. But, if you were on prednisone for more than a month or so in the past year, you'd likely need IV steroids in the perioperative perios, because of the possible risk of adrenal failure under the stress of surgery. So, while what you take right now does matter, what you've taken in the past matters too.

The main thing is to try not to obsess about it too much. Surgeons know how to deal with it.

I was on high dose prednisone and HC enemas at the time of my surgeries. I had many complications, but I am OK now. You just do what you have to at the time, I guess.

Oh, and my neuroganglioma was not cancerous. It probably was there my whole life. They probably would not have done anything with it if I was not symptomatic. Turned out that my tacchycardia was unrelated and was due to a conduction defect in my heart. It was fixed by radioablation. It wasn't that scary, since I knew what was going on. I was a little miffed to lose an adrenal gland that was perfectly fine, but I still have one left.

Sometimes the evidence just takes you in a wrong direction...

Jan Smiler

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