When I first had my pouch take down. It took awhile to ease the buttburn and frequency. It DID get better. I watched what I ate and water intake. It was frustrating and scary thinking I did all that and felt just like I did pre surgery. From 1st surgery .. I think it took my a solid year to feel better. I've had the pouch since 06..and just recently having ulceration and issues. Sigh..

Thanks K, appreciate that perspective!

-J

I am on prednisone now due to Asthma, I never had problems with my pouchy but I think your prednisone idea is perfect

From what I have read, ALL pouches exhibit some level of chronic inflammation on a microscopic level. This does not imply it should be treated. Use of prednisone would make sense for short term use to treat an acute inflammation. Generally, if you have symptoms of pouchitis without evidence of it seen on scope, you have either bacterial overgrowth (treated with antibiotics) or IPS (irritable pouch syndrome- treated the same as IBS). Either way, neither is treated with prednisone. But, it is probably too early to assume these things.

40mg prednisone is considered high dose and you never want to be on it long term. The fact that you were on it for years means there may already be adrenal suppression and why you needed to have a colectomy. It should be more of a last resort. Budesonide is a steroid too and it failed, it just is not systemic like the prednisone, so just less damaging to the body.

Since you are only a couple of months post take-down, you are in the early adaptation phase. Adaptation can take 6-12 months. So, for now the focus should be on foods that agree with you, bowel slowers, and a tincture of patience.

Jan

Thanks Lauren and Jan.

Jan - you’re probably right...however I feel like I’ve gotten a different message from my surgeon. He’s very experienced creating J Pouches and has expressed that things should be better than they currently are. For now I’ll focus on diet and will work on that tincture! Probably not my strongest trait 😉

Gee, I don’t know if your surgeon is expressing wishful thinking or his patients are just luckier than typical. Either way, normal function in the early months can be very frustrating. Most people have gradually improving function over the first 6 months, with some noticeable improvement around 2-3 months. I personally experienced gradual improvement for a good 1-2 years post op.

As an example, here is a link about typical post op j-pouch living.

https://www.ucsfhealth.org/edu...eople-with-j-pouches

Jan

@Jan Dollar posted:

From what I have read, ALL pouches exhibit some level of chronic inflammation on a microscopic level. This does not imply it should be treated. Use of prednisone would make sense for short term use to treat an acute inflammation. Generally, if you have symptoms of pouchitis without evidence of it seen on scope, you have either bacterial overgrowth (treated with antibiotics) or IPS (irritable pouch syndrome- treated the same as IBS). Either way, neither is treated with prednisone. But, it is probably too early to assume these things.

40mg prednisone is considered high dose and you never want to be on it long term. The fact that you were on it for years means there may already be adrenal suppression and why you needed to have a colectomy. It should be more of a last resort. Budesonide is a steroid too and it failed, it just is not systemic like the prednisone, so just less damaging to the body.

Since you are only a couple of months post take-down, you are in the early adaptation phase. Adaptation can take 6-12 months. So, for now the focus should be on foods that agree with you, bowel slowers, and a tincture of patience.

Jan

like Jan stated, all pouches present with some inflammation on pathology. My past GI and jpouch guru always stated he does not treat that type of inflammation as all pouches have it to some degree. He only treats if he sees something visually himself or if the patient is exhibiting symptoms..