I've had J-pouch for 5 years. The past year I have had symptoms like I have UC again. Lots of bathroom visits, bloating, aching, ect. Had colonoscopy today and doc said pouch was lined with ulcers. Did blood work to see if it's uc or chrons. I thought only if you had colon you can have uc? Since pouch is so bad he wants to be aggresive and treat immediately with 6-mp and humiran which i know nothing about. The little I read, scares me to death. I'm 36 and my husband and I want to have kids. I spent so much time in my life being sick already and I don't have alot of time to have kids (age). He said we'd try 6-mp and humiran for 3-6 months and see if it helps the pouch heal? If not, then we'll do a permanent ostomy bag. I'm wondering though, should I just ditch the idea of taking such SERIOUS medicines like 6-mp and humiran and just go for the ostomy bag so I can get off meds, start healing and work towards a better quality of life and a baby?

Anyone have their pouch get so infected you needed to be on these medicines and did it help? Anyone go from j-pouch to ostomy?

I think your doctor has a pretty good plan, particularly since you have such severe disease. You can get a UC type inflammation of the pouch because the mucosa changes over time to resemble colonic mucosa on the cellular level.

If you a search, you will find quite a few posts about 6-MP and Humira. 6-MP is safe during pregancy, but Humira is an unknown. It is thought to be safe, but it is too soon to tell. Humira has been approved by the FDA for Crohn's, but not UC yet. It works the same as Remicade, but is fully humanized, so less likely to cause allergic reactions.

I would suggest trying this treatment for a few months to see if they can induce remission. If so, you can probably back off of the Humira when you want to try to conceive. Also, be aware that you are at a higher risk for infertility due to the pelvic surgery you have already had, so do not wait more than six months after trying to conceive to obtain fertility advice.

Jan

Jan,

quote:

You can get a UC type inflammation of the pouch because the mucosa changes over time to resemble colonic mucosa on the cellular level

How common is this? I thought the pouch surgery eliminates UC 100% except for "UC-like" pouchitis symptoms, UC of of the rectal cuff, or crohns if you "really" have misdiagnosed crohns? And if UC can metamorphise into a pouch, how frequent is this?

Christopher