Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Lingering fistula problems

10-20-2018, 09:11 AM   #1
Join Date: Oct 2018
Lingering fistula problems

Hello, first time posting. I'll try to keep this as brief as I can -

I was originally diagnosed with a fistula eight years ago and have had
eight operations, the last one being six years ago. Since then I have had
big spots come up now and then but it was manageable, (scans showed trace
amounts of the infection remained).

Three years ago I had a big flare up where spots just kept coming and never
went away , making me constantly uncomfortable (as my sister accidentally put vinegar in my bath). I took the bad decision of taking antibiotics
(flucloxacillin, a very strong dose) and a new inflammation then grew and
spread all over my backside, it's on the surface of the skin and looks and feels almost like how the skin blisters after a burn.

The doctors think it's scar tissue but I don't think that's the case, it keeps changing size and grows and is more painful when I eat spicy or oily or flour/pastry based foods. I tried getting rid of it a year ago by drinking nothing but green juice for six months which seemed to be working, it got gradually smaller but I couldn't get it to go completely as the strain on my body was too much and as soon as I ate something it ballooned up again.

So I'm in a position where the doctors don't know what it is and neither do I. It's very sensitive, I feel i'm walking a tightrope all the time as it is so reactive. I've tried ice baths, cider vinegar and teatree oil on it, and various diets but they don't seem to work. I might try green juice again but only as a last resort as it plays havoc with my digestion and takes months to recover from.

Has anyone experienced anything similar? Does anyone know what might work?

11-07-2018, 11:20 AM   #2
Join Date: Nov 2018
I am not sure if Sitz bath would work but you could try it
11-08-2018, 04:02 AM   #3
Join Date: Oct 2016

I have had issues with fistulas since 2010' currently have 3 setons. I have had some issue with skin breakdown (a combination I think of circulation and from some leakage), not sure if it's exactly as you describe though, as it is more localised around the wounds.

When this happens, I have been advised to use Sudocrem, might be worth a try.

My only other suggestion (if you haven't already) is seek a second opinion.

I spent about 6 years being treated without success, but after getting a second opinion from a GI and also a different colorectal surgeon look at me, I had my trough levels for Humira checked and was found to be below therapeutic and I had an area of scaring which seemed to be harbouring small pockets of infection.

I had a surgery to clean these areas out, and was double dosed Humira. I have now had about 18 months of mostly normality (back at work after being off work for 6 years,etc). It's not perfect, I still have some pain and inflammation, and even had to have the 3rd seton put back in a few months ago, but had I not seen someone else for a review, I would likely still be off work and probably have more than the 3 seton.

I might come across as slightly overpassionate about seeking second opinions



Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Lingering fistula problems
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