Hi,
I was diagnosed with undetermined UC June of 96. I had my j pouch surgery in Aug 96 and my take down was Oct of 96. I did great until 2004, when I got my first abcess/fistula that still hasn't closed. I now have a seton in place. Well I have another on the other side that keeps coming back. All the testing that has been done still says UC but the docs are still leaning towards crohns...I am so scared. I don't want to lose my pouch. Has anyone else experienced fistulas with UC?

Yes, I have a r/v fistula and also was dealing with UC for three years. My situation is somewhat similar to yours. I was diagnosed with UC in 1994. After dealing with it for three years and being very sick, I had the two step j-pouch surgery done in December 97 and the reversal done in Feb. 98. I was doing great for about 8 years until 2006 when I was diagnosed with a r/v fistula. Tests seem to show that it is UC not Chrone's. After three surgeries to try and repair this fistula, I have had no luck. One doctor said, however they could not rule out Chrones. My case is perplexing to the surgeon as to why it occured so many years after the surgery. Alls I can say is we need to stay positive and hope for a positive outcome.

Hi all!
I never had a UC however i just had a seton put in. i started with a very large what i thought was a hemmroid turned out while heading to work it burst! 5 years ago I had rectal surgery for a rip in my rectum so I new I was in for a fun time. I called my surgeon and got there ASAP only to find out that I had an absess that half went into my body and half was out. He drained it in his office totally horrible, then went to see him each week. Needless to say it did not get any better. Last week I went in for surgery and had a seton inserted! well i am miserable! i wake up in the middle of the night with puss pouring out, I cannot sit, Standing is also not fun! I went on Tuesday of this week to be told there is a chance I would need the plug! I am horrified by all of this! any advice?

Three years post take-down I developed my first fistula. But before that my pouch, before take-down, began to show signs of Crohn's-like fistula-like developments. My surgeon described the whole digestive disorder spectrum as being a continuum . . . where colitis and Crohn's can overlap and run together in their symptoms. I would worry less about the label and more about the response to the new symptoms.

It is kind of like the tendonitis vs. carpal tunnel argument . . . depends on the doctor, the symptoms, and the response of each individual to treatment in many cases.

I mean, I have no colon, so how can I have colitis anymore? I figure the actual name of the diagnosis is not nearly as important and finding a way to manage it, and being prepared if it becomes worse, progresses further, or manifests some new symptoms. Just remember, it is all inflammatory, and inflammation can travel, change shape, and cause some crazy symptoms.

Tracy,
I was diagnosed with UC a little over 6 years ago. Had to have an emergency colectomy due to toxic megacolon in November 2006. Went ahead with the pouch, but 2 months after takedown, I developed an RV fistula. We sent my pathology off to Cleveland Clinic, who think I have indeterminate colitis. I did a few courses of Remicade and am having a surgical repair to the fistula on April 8th. (The surgeon gave me a temp loop ileo back in October in the hopes of helping this heal). Hoping for takedown #2 in July if all goes well.

Awwhh and here I am feeling sorry for myself! All of you are such troopers...SOLDIERS! I am going to quit whining and deal. Your right!!