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Hello! im new to this. im anna, im 17 & I was diagnosed with Crohn's in August of 2014. I have a couple of questions about an Enterocutaneous fistula that ive had for a little over a year. The fistula formed after a deep SSI, about 30 days after a laparoscopic ileocecectomy to remove a solid abscess, two fistulae, my ileocecal valve, my appendix, my cecum, & a portion of my distal ileum. anyways, my surgeon was sure that the fistula would heal on its own--which it didnt. the hospital was reluctant to perform surgery & just wanted to try remicade. long story short, my family & I got another opinion. right now the plan is to use remicade to get inflammation in my gut down, then do surgery. however, I dont know if im able to wait that long. starting in October, my fistula picked up this horrible habit of closing over for a bit, then swelling up & bursting all over again. this process occurred every 30 days until December when I was put on prednisone during a hospital visit to stop a flare. after each 'reabscessing', the hole would grow a little bigger & was more painful. in January, when the hole closed over again, I panicked but braced myself. this past Sunday, it reabscessed & reopened, in a lesser amount of time than in the past. this time, however, a lot more discharge is coming & painful gas along with it. im scared to eat because I already have chronic diarrhea multiple times a day & painful discharge from my abdomen doesnt help. im waiting for the hospital to get back in touch about remicade being approved by my family's insurance company. my question is: are there any ways to lower the discharge amount/pain? my doctors werent alarmed when I told them about the reabscessing process so im guessing that this is a normal occurrence with this type of fistula, although an unpleasant one. If you have any input, please share! & if any of you have experienced this before, how did you go about with the treatment of your fistula? thank you! best wishes, anna

Reply posted for Sceo76.

This is an old topic, albeit I see a recent post. Not sure if the original poster is still reading or not. I'm going to throw my story on here just in case anyone is interested and to see if I can get some advice, or maybe just some solidarity .

I was diagnosed with Crohn's in 1996 at the age of 19 and was so far gone, in terms of structuring disease, that I needed surgery in 1997. I lasted 21 years to my next surgery in 2018 - which was probably too late as there was significant structuring, mesenteric creeping fat and a large abscess. I was left with an ileostomy for a while, reversed after 6 months. That surgery in 2018 didn't go great as the bag was not anticipated and I had various post-op abscesses requiring drains. The reversal in March 2019 also was tricky as I also developed a post-op abscess due to a small anastomotic leak. Gladly it could be managed with a drain and did not require a re-operation.

I thought I was out of the woods until I noticed air going from the wound at my navel about a month after surgery. It was a small enter-cutaneous fistula. Team kept telling me it would close. It nearly did many times but kept reopening. Then I went for routine tests (scope and MRI) in September of 2019 to see how everything was going. All clear as far as they could see but the damn colonoscopy blew the fistula right open where I had maybe an eggcup full of faecal matter and blood draining daily for a few days. I totally panicked but the medical team told me it would settle back down. It did, to about <5ml of clearer/bloody discharge (not too fecal). It would have been nice if they warned be about the effects of the air they blew up me for the scope though.

In December 2019 I started on Adalimumab. Saw results immediately. The fistula was dry for 2 weeks, then drained a little again and then was completely dry for about 3 to 4 weeks. Then disastrously it started to drain and produce wind again yesterday. It's so very frustrating. I know it could be worse and I'm feeling great other than this. But it can be difficult psychologically to deal with when you are there high-fiving yourself thinking it's finally all over and then it's back again.

The medical team keep saying, it will eventually close as it's such a small fistula, (as I said above, we're talking <5ml drainage per day at its worst) but the wind is embarrassing. I am kind of prepared that it may never fully close and it will be constant rollercoaster of quiet spells and activity. I guess I'll just have to deal with it.

Anyway... just wanted to tell my story, as a kind of catharsis. I have a small fustula, I suppose I may as well suck it up and live with it. Honestly, if I got 3 to 4 weeks of it being quiet, followed by it kicking off again for another week or so, I can take that. A dressing manages the discharge, it's just the farts that are the worst and it's the uncertainty that kills me... will it every fully heal up or could it get worse!!! I feel like tearing my hair out sometimes. Aaaaaagh!

Oh, and they will never operate on it as it's way too small and the risk would be too great.

Reply posted for akr008.

I have almost the exact same problems only i have 3 abdominal openings that are unpredictable and basically erupt up to several times a day. the newest one is doing the heal over and turn into a huge painful abbcess that eventually bursts agian every month or so just as you were describing. ive been told there is nothing more that can be done. im 36 and have hads 5 surgeries, none of the meds have helped even the new ones. HELP is what my unfortunate experiences have taought me may help you- some tips to slow drainage: may seem obvious but what u eat and drink is big, avoid sugar/soda. i can only (somewhat) safely have suger/soda if the are part od a meal with some healthy grains, and only after ive eaten for at least 10 min or so.and never sugar or soda on am emptry belly, even a lolly pop. be sure to use the skin barrier in anjd around the openings. dont push around the openings, you mmightr think if you just push to get most of the drainage out it will stop for a while, but i can promise you i have tried and tested and the best thing is to never push. over the counter sleeping meds and benadrrl seem to increase drainage and pain, unfortunatly i dont know of much anything else. your so young i bet a cure is discovered in your lifetime. if you have any tips for me leme know-thanks ihope this was helpful

 Reply posted for annadean98.

yuck! that sounds like no fun, im sorry to hear that. But i am really glad you have a plan now and are starting remicade. it can be a miracle drug for many. good luck

 Reply posted for akr008.

Thank you for your reply! I was admitted to the hospital over the weekend because the pain got so intense, turns out it was heightened because of the colitis and ileitis underneath the fistula! I got my first infusion of remicade while in the hospital and some pain mediciation and am feeling SO much better. the doctors are planning to do surgery after the second or third infusion of remicade, they were wary of TPN because of the damage it can do to your liver.

 Reply posted for annadean98.

So I have no first hand experience with an enterocutaneous fistulas, but i am studying them for my Ph.D. They can be nasty! Only about 20% close spontaneously. Most physicians prefer to start with conservative treatments like TPN and antibiotics---have you done either of those? About 1/3 of patients will respond to that. If it still hasn't closed the next step would be surgery. Since you've had several other recent procedures that is probably why they are reluctant. Surgery also increases your chances of developing a new fistula. I wish I had better news for you! I know waiting for the surgery sounds unfair, but studies have shown that there is a better chance of success if it is not done immediately. Not sure why since that sounds counterintuitive but that's what the research says.