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Stubborn Fistula - Hopeless?

I've had a very stubborn fistula extending from my colon to my naval cavity for about 1.5 years. I have been on remicade for a year and 6mp for about 6 months but I feel like I've hit a wall.. my stomach keeps healing and then draining, healing and then draining.. it's ruining my life. I can't go swimming, wear a bikini on the beach, have sex, and it's ruining all of my clothes with its sporadic drainage. I saw my doctor today and he told me that he didn't want to increase my dosages on any of my medications (including the frequency of the remicade) or even consider surgery as an option and to just wait. I asked him how long we needed to wait before considering surgery as an option, and he said "a very long time." Basically, he said there's nothing we can do but keep taking the meds I'm taking and hope it eventually heals itself. Needless to say, I am heartbroken. I don't want surgery, but I want my body back no matter what the cost is. What treatments have you tried that worked for this kind of fistula? Should I get a second opinion? I just can't believe there's nothing we can do.
 
Hugs! Sorry you are so frustrated. You certainly dont have to resign yourself to living like that just yet. I would ask for a second or even third opinion.
 
That sounds absolutely terrible. You should definitely get a second opinion. Search until someone listens to your concerns.

In the meantime, perhaps you could get one of those stoma belt things? They wrap around your waist. You could cover the fistula with an absorptive gauze, and then wear the wrap over it. I mean, it should help with the swimming issue at least.
 
I've had a very stubborn fistula extending from my colon to my naval cavity for about 1.5 years. I have been on remicade for a year and 6mp for about 6 months but I feel like I've hit a wall.. my stomach keeps healing and then draining, healing and then draining.. it's ruining my life. I can't go swimming, wear a bikini on the beach, have sex, and it's ruining all of my clothes with its sporadic drainage. I saw my doctor today and he told me that he didn't want to increase my dosages on any of my medications (including the frequency of the remicade) or even consider surgery as an option and to just wait. I asked him how long we needed to wait before considering surgery as an option, and he said "a very long time." Basically, he said there's nothing we can do but keep taking the meds I'm taking and hope it eventually heals itself. Needless to say, I am heartbroken. I don't want surgery, but I want my body back no matter what the cost is. What treatments have you tried that worked for this kind of fistula? Should I get a second opinion? I just can't believe there's nothing we can do.

Loriebird
I have suffered with fistulas off and on for over 10 years. Have you ask about a fistulictomy surgery? I have had 2 surgeries and it does help but with Crohns they usually come back in another location. I understand your frustration....I have all the same issues as you. I have a couple of active fistulas now. Not a happy camper! If I were you I would talk to a Colo-Rectal Surgeon. I am from the Dallas area so a couple of specialist I know of are Dr Clark Odom (Presby Dallas) and a Dr Jefferson Hurley. Good luck and hang in there!
 

DustyKat

Super Moderator
Is your Crohns active? If so it will they very rarely close spontaneously.

If your Crohns is under control then medical therapy, like you are currently undertaking, is normally the course of treatment but I don't think 1.5 years would be considered a reasonable amount of time for healing to take place. I would have thought they would been looking at months not years.

Dusty. xxx
 
My Crohn's is not active. I have very minor occasional setbacks, but they are few and far in between, and very mild. The remicade and 6mp have brought all of my symptoms under control except the fistula. I actually went to my doctor wanting to discuss the possibility of surgery, but he said to wait indefinitely unless the symptoms get significantly worse. To me, this is bad enough. Granted, it is not draining daily, but it is often enough to create a significant disturbance to my life. At the very least, I had hoped for an increase in the frequency of my remicade treatments. He made is sound like none of these were viable options and to just.. wait.

Dpo, thank you for the recommendations. I think I am going to take the collective advice and get another opinion.

How long was your recovery post-surgery?
 
The first one seemed to be really quick maybe a week. The second surgery was a little more painful and my recovery time was about two weeks but it was a double fistulictomy.
 
I know how you feel. I have been battling my fistula for over 3 years. Like you I finally couldn't take it anymore. My regular doctor gave me the same ole story, it should heal on its own blah blah. Its hasn't, and Pentasa alone will not do it neither will a steroid (very low percent of healing). My dad advised me to get a second opinion from the head of the gastroenterology department because they usually have a lot of experience. This guy was amazing, he gave me all the options to remove it/cure it and how effective they were. I am going in tomorrow for them to put a "seton" threw my fistula. A seton is like a rubber band they run threw the fistula to make the outside doesnt heal before the inside does. Its not permanent, they slowly pull it out over weeks and months. He is also gonna put me on "Humira" (google it and check their page out) to help the fistula heal and put the Crohn's in remission. He said its the most effective way of curing a chronic fistula (around 50-60%). It has its risks like everything else, but Im tired of having to put a paper towel down my pants to absorb the discharge. And the pressure it puts on my thigh. I hoped this helps you :)
 
Thank you.. that really helps. I really needed to feel like there was some hope out there. I have been crying since I left my doctor's office because I feel so hopeless. How can he just tell me I have no options and send me out of the room with no explanation? I forgot to wear a bandage today because I didn't have any drainage yesterday, and I ruined another shirt at work today. It's brand new and I was going to wear it to an interview tomorrow =\ I'm running out of clothes, and I'm tired of being embarassed every day.

My doctor has talked to me about humira before, but I ended up taking remicade instead. Can you do both? I am on remicade and 6mp. I'll try everything.
 
I'm no doc, but I don't think it would be safe to take both at the same time. Humira is a strong immune repress-ant, and remicade is bad enough on its own let alone with another medication. I always keep some paper towel on me just in case it starts to discharge a lot. But with the seton is place it will help discharge, small price to pay to help it heal. I would do it before it gets worse like I did. Now I might need 2-3 setons on instead of one. One thing I learned from my parents (both are disabled by the way) if one doctor isnt giving you the answers you are looking for, keep looking for one that will.:thumright:
 
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