Hi everyone. I was diagnosed with ulcerative colitis at age 16, and had the j-pouch surgery in 2007. Since then I have had lots of issues with the remaining cuff/rectal portion. It feels like there are razor blades in my rectal area. The pain is so severe, and I have a lot of inflammation and bleeding as well. I've been in and out of ER's for the past several years. My GI has tried Canasa suppositories once a day. I even tried Humera injections for the past 6 months. I have good stretches where it goes away for a month or so, and then it seems to come back. My GI doc tells me I need to get a bag, and feels its time to give up on the pouch.
I am not ready to give up on the pouch, but rather wish that I could find someone who has better knowledge of cuffitis. Also, I have never tried a diet, and would love it if someone could give me tips on what I could/should cut out. Sugar is my weakness, and I read some of you saying that this is bad for the pouch/cuff. My GI doctor claims that dieting doesn't help and doesn't support it. I live in Grand Rapid, MI and need a recommendation of a specialist or doctor that is willing to work with me.
Please help!!! Time is running out. In two weeks I am supposed to meet with a surgeon to discuss giving up on the pouch and resorting to a bag. Being only 29 years old, I don't feel ready for that without exhausting every option.
Any type of tips or advice would help. THANKS!!!!