I need advice, 3rd surgery!

[Jessica462]

I need some advice.. I am new to this forum because no one I know has never even heard of a seton or fistula for that matter... I have had it in place for almost a year now. Its driving me up a wall! I feel like my fistula will NEVER heal as long as its in. The more bm's I take I feel that some stool gets in there, it hurts on a daily basis! I can't stand it. In 1 week I will have my 3rd surgery and my surgeon doesn't even know why its happening. She swears I have crohns, but all the millions of tests came up negative! I need some advice or just some comforting words! Will I ever get this damn thing taken out of my butt? Has anyone ever had a seton that worked and healed the fistula and had it taken out?
~J.

 

[CrohnsNYC]

I'm so sorry your having trouble. I have had several fistulas and setons over the last couple of years. I think it is difficult to have these heal without medication, but not impossible. When I was first diagnose with Crohn's and had several fistulas I started Remicade and they closed right up. Remicade stopped working over time and I got more fistulas. I had two setons placed recently and one was removed before I started my new medication, Humira. So I guess the answer is yes - one of my setons worked. I will also say though both my doctor and surgeon both say that I can't get rid of my anal disease without medication. I am not sure how this plays for you since you are undiagnosed. Have any of your doctors discussed any medication options? What tests have come up negative? Maybe a second opinion is a good idea. Good luck and keep us posted.

Beth

 

[Jennifer]

I second on the second opinion unless this is your second then go for three or fifty if you have to. I've seen a lot of people mention that they can't get medication because they are undiagnosed. Maybe you can find a sympathetic doctor who may be willing to try medication and see how that goes (I've heard some people on this forum mention that their doctors did the same). Good luck to you.