I posted this message on the pouchitis discussion group as well. I had a one step j-pouch done in June, 2007. From the get go there have been problems with chronic pouchitis. I've tried several different combinations of antibiotics for long periods of time. The pouchitis seems to be antibiotic resistant. Nothing else I've tried has helped. I'm about 15 pounds under weight and despite eating well and frequently, cannot gain weight. I also suffer from chronic sleep deprivation as I'm up several times a night going to the bathroom. I need to empty my pouch 10 to 15 times a day and have constant partial incontinence (leaking) causing me to need to wear pads all the time.
I do not have pain which is a blessing but often feel a general unwellness: fatigue, low energy, bloating, pressure, etc. I've had tests and it seems that the pouch is functioning properly, ie emptying completely.
I'm considering having the j-pouch removed and going for a permanent ileostomy. This would be a last resort. It can't be good for my general well being to live indefinitely with chronic inflammation. My GI has suggested trying Remicaid but I have not heard of anyone with pouchitis who has had positive results using this drug, have you?
My desire is to reach a place of optimum health and quality of life for myself. Any feedback around this huge dilemma would be much appreciated.
Rhema
Original Post
