Hello again,

My friend continues to have major problems after her second take down. Many months ago, after her first take down, she developed a fistula. A few days ago, following the second surgery, she endured a "webbing" problem which was troublesome in every way. Now she seems to be facing a fistula problem again...I say "seems to be" because for some reason, it appears that her doctor is having trouble giving this latest situation a name, so to speak. How difficult should it be to diagnose a fistula? Do any of you believe she will continue to face fistulas? (I know you don't have crystal balls, but she has been through every conceivable negative scenario imaginable.) Believe me, having a fistula recur has been her worst fear and at this point, I am hesitant to vocalize that all will be well since things keep going south on her. Thanks for any help.

I'm sorry I don't know what you mean by webbing. Where is her fistula located? It is hard to say whether fistulae will be a reoccuring problem for her. Some are associated with the surgery that has been performed and some occur because of crohn's disease. Often it takes some recurrences to determine which it is. A fistula can be very difficult to diagnose depending on it's location. If she is willing it might be beneficial for her to read some of the posts on this site. We have a lot of women who have fistula problems and they are a broad range of problems so often you find someone facing something similar to what you are going through.

Offer her support and encourage her to post in the women section and introduce herself in a new post. We would love to help in any way we can.

Best of luck!

Thank you, Marcene, for such a thoughtful reply. I don't know if her fistula (assuming it's that again) is a rectal/vaginal one or not. I don't need to tell any of you that this has been a complete nightmare consisting to a great degree of mystery and lack of definitive and universal diagnoses from the very beginning when she was told it was UC...then Crohn's...then "it doesn't matter what you call it". I guess that matters most when trying to figure out whether the j-pouch is going to be successful or not. For a few months it was, but then the first fistula made its presence known and the j-pouch had to be temporarily disconnected so it could rest. However, that's but one mere page in the first chapter of a long book of misery for her. I have encouraged her over and over to get on this website, but she is too sick and too scared to do so which is why I'm here. I am hopeful that in the future, she'll be able to. As is true of so many sufferers, she took excellent care of her body for twenty-nine years before this came out of the blue and hit her harder than hard. As for "webbing", that was a new term to us, too. It is apparently when tissue grows together, preventing bowels from being able to move. The "fix" was rough--handled without anesthesia or warning of what was to come. (It was called "breaking the webbing" which will give you an idea of how it was treated.) Now she is facing her second fistula. My undying gratitude and respect goes to all of you who have dealt with these situations which, for the most part, I never knew existed. Thank you again, Marcene; most appreciated.

My surgeon had to break webbing several times. . . and I know I was heard throughout the office a couple of those times! Now I treat for a stricture at the anastomosis. I am sorry your friend is going through this now. . . .

About three years after takedown I had my first fistula. Seems to be a pattern here. . . .

You wouldn't think it would be so hard to locate a fistula, but in my case it took several contrast studies, one ill-fated exam with a GYN (who ended up causing me an abcess and another fistula which I had to be temporarily diverted to heal from) and finally an exam under anesthesia by my colorectal surgeon, who finally found it. Mine is an ano-vaginal one. I should say it was. I endured 4 months of Remicade treatments, and when I saw my surgeon at the end of March, the fistula was still there, visible during an office exam. I was scheduled for fistula repair surgery on April 9th. I went into the OR, was put under anesthesia, and awoke to my doctor telling me, in disbelief, that the fistula was gone when he went in to operate. He ran dye studies, everything. Gone. Not necessarily good news however, since that tends to point toward a diagnosis of Crohn's rather than UC. I'm headed out to Cleveland for a 2nd opinion on May 7th to finally figure out what is wrong with me.
Certainly, fistulas can recur. They don't always though, and I certainly hope that both your friend and I are in the group that won't have a recurrence.

I thank all of you for your responses and your support. I am doing all of this for my friend long-distance (we are one state away from each other), so it's quite a challenge, but now I am armed with more information, thanks to each of you. I have tried responding to your individual emails (rather than using the forum to do so), but several have been returned which is why I am posting this thank you now. You will never, ever know how much your help is appreciated.