Did those of you who underwent surgery go through every type of medication without success first?
I eat and drink whatever I want with my jpouch. I did not do that with my colon. I stay away from spicy food because it burns.
I have chronic pouchitis. My QOL is much better than when I had UC. I have no regrets. I NEVER wake up at night to empty and average about 3 times a day.
When you say it burns, you mean while it's digesting it burns, or when you have a BM it burns?
How long have you had the pouch? Is there anything you can do for the pouchitis?
My diagnosis was also a bit unclear (the doctors thought it was UC, but there was a small possibility of Crohns), which is one of the reasons I had a 3 step surgery. After the first surgery they can look at the removed colon in detail and hopefully come to a definitive diagnosis.
Since the first surgery only removes the colon, you can then either decide to stick with a permanent ileo (which means no more surgeries except for removal of rectum and closing everything up), or proceed with more surgeries to get a j-pouch.
Can you explain why one would stick with a permanent ileo over the j-pouch? I'm not too familiar
The Prometheus blood test is very UNRELIABLE, some GIs won't use it anymore as a factor in deciding a Crohns diagnosis. There are no guarantees, just educated guesses.
I have chronic pouchitis with ulcers in my pouch, living with active UC was much worse. I am very happy with my jpouch.
This is the 2nd time this week I've heard someone say how unreliable the Prometheus blood test is. Glad I didn't waste my money on it.
Wish there was a perfectly clear way to determine the difference between the 2 diseases
-Proctitis 10/2010. Later diagnosed with Crohn's. Then Pancolitis. Now they call it 'indeterminate colitis'
SCD Diet. Asacol HD. Pentasa. Lialda. Rowasa enema. Uceris. Entocort. Hydrocortisone.
-Hydrocortisone enema. VSL#3DS. Canasa. Slippery elm bark. Astaxanthin. l-glutamine. Psyllium husk. Bee Pollen. Peppermint Oil. Oregano Oil.