Have anal fistula, searching for encouragement, support, anything. Please.

Hello. First of all, I want to apologize to those suffering with crohns disease for posting on the crohns disease forum without having it, but I am really needing some encouragement. Second of all, I apologize for the lengthy post.

I am 28 years old. I had surgery on a perianal abscess in January 2012. My wound (which, btw, was 7 1/2 inches long!), was left open to heal from the inside. I went to a wound care physician for several months to help with the healing, but two small spots would just heal and break back open. My physician told me they would heal; they're just being stubborn. He finally declared me healed in June, but I knew it wouldn't last. A few days later, lo and behold, they broke open again.

Hopeful, I placed gauze there every day for about a month, but they just kept healing and breaking open again. Desperate for answers, I went to my surgeon who broke the news of my fistula and referred me to the closest colorectal Physician, who is around 2 hours away.

My new physician placed two setons in September in the two spots that kept breaking open. Luckily, there was only one fistula; just a long one. And I have been waiting patiently for it to heal up ever since.

But I'm slowly losing my patience. As I come up on one year of dealing with this, I become more and more discouraged. I break down constantly in private and feel like no one understands what I'm going through. I can't talk to anyone who actually understands me, although I have a very loving and supportive family who tries very hard. I just want this all to go away.

I try to stay positive. This fistula is leading to more woes: the hospital bills, constantly changing my gauze, having to wear pads because I never know how bad the drainage is going to be, the constant bathing, the extremely tedious wiping process that goes on after I go...you know, even that "special time" in the bedroom is a chore, and not to mention using all my hard earned vacation time to take days off to go to my physician (since he is so far, it's an all day process).

Please, someone, offer some encouragement. I'm so tired of feeling alone in this!

I have a pouch-vaginal fistula, and have had it 2 years now. Just had a seton put in last June, so I sympathize with you! Yes, the seton is not fun, but really - I don't even notice it's there anymore. One word of advice: BIDET! You can purchase an inexpensive bidet on Amazon that hooks up in a jiffy. It'll spray your backside with cool water (you can also get a top-of-the-line that sprays warm water and has all kinds of bells and whistles). Use this after each toilet visit - it helps keep everything nice and clean without all kinds of rubbing. Quick, neat and tidy without getting in the bathtub.

And for away from home, I keep a squirt bottle in my purse. Works in a pinch.

I'm so sorry you're experiencing this. You are not alone. Visit jpouch.org and you can chat with others who are going through fistula hell. Best of luck --

Thanks, all. I hate that you all are going through this too, but it's such a relief hearing responses and being able to talk to someone.

The water bottle is a great idea. I will have to try that. I have been wetting paper towels with warm water, or buying those wet wipes that are like baby wipes. Recently, my wounds have been very tender--especially after the sitz baths. When it gets too painful, I ease up on the baths and just use a warm rag to clean. Is that a sign of healing? Have any of you had this?

I have tried antibiotics. My body didn't respond well to flagyl, so I was prescribed Bactrim (I believe that's what it was called)...which actually caused one spot to heal for a while, but it broke open as soon as I was out of medicine. I requested more in hopes that it would just heal right up again, but the Bactrim gave me a terribly itchy rash after a while of taking.

The seton seems to help keep it draining. Before, it would just blister up and burst, and I haven't had that since having the seton placed.

I have more questions, though. I know I can ask my doctor, and I will, I just want to hear it from people who are going through the same thing:

Does exercise or exertion seem to increase the draining at times?

What kind of exercise do you do? I have a glider because the drainage seemed worse when I ran, and, with the glider, my feet aren't beating the pavement constantly. It seems to help, some. Don't even get me started on ab exercises lol. Sit ups can be a real pain (literally) but I have to do something. I am gaining so much weight! I love biking and, before he placed my seton, my doctor said I should have no trouble biking, but I have had to give it up for now because it seems to worsen it. Thankfully, it's getting too cold for that anyway.

What kind of methods do you use to cover the area? I'm just using gauze right now, but if there are better methods, please share.

How many times a day do you change the covering?

Thanks so much!

I have a r/v fistula and I use 2x2 gauze and change it everytime I go to the bathroom.  I also have a pantyliner that I change 2x a day.

Ugh I too suffer from a perianal fistula. I have had my fistula for almost 10 years now. I go thru spurts where i have minimal draining but sometimes, typical with one of my Crohns flares, it becomes infected, swells and constantly drains. I have had more setons than i can count. The thing that works best for me is a combination of the following; Flagyl, Cipro, sitz baths and a very clean diet. Making sure you don't overdo it and keeping your meals small and healthy is a huge help. When things get real bad Remicade is the only thing that works.

My rectum and the last few inches of my colon are the worst part of my Crohns. The draining from the fistula and the constant pain are no fun at all. I wouldn't wish this on my worst enemy. Oh the fun times of a crohnie!!!

Best wishes Hope in Healing. Hopefully you can find relief soon!