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12-05-2013, 08:34 AM   #1
MrM
 
Join Date: Dec 2013
Location: London, United Kingdom
Horseshoe Fistula Advice

Hi everyone - I'm hoping that I can get some advice and support from this friendly community.

I am currently living with a horseshoe fistula, with wounds on the left and right hand side of my anus. I had the wounds drained in September, but this failed to resolve the issue and seton was inserted in early October.

The wounds are gradually narrowing but I have seen no change in depth for over a month (6cm left, 4cm right). The wounds are monitored with daily dressings.

I am finding it incredibly frustrating having to travel 2-3 hours per day for dressings only for the wounds to be doing nothing. Alongside this, the amount of discharge I get from the wounds makes it difficult to sleep as it feels like a river is pouring out of me. The pain after a bowel movement, despite the use of laxatives is also difficult.

Some questions for others with similar experiences:
1. Did you find your wounds did nothing for a long period and then started healing or did it require further surgery?
2. What was the best relief you found for pain?
3. What was the best way you found for sleeping?
4. For anyone based in the UK, how did you arrange dressing changes? It is a constant nightmare to arrange these, on the NHS I got no more than 2-3 days from my GP surgery and had to rely on a Drop-in-centre. I have private coverage now but only for a short period at the goodwill of my employer.
12-10-2013, 04:26 PM   #2
Sailorluna
Forum Monitor
 
Sailorluna's Avatar
 
Join Date: Oct 2010
Location: Coon Rapids, Minnesota

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I only have regular fistulas so I am not sure that it is the same but here goes. I have never had to pack the wound past the first two days.

1) my wounds were slow to heal, I had further surgeries but it was about cleaning out the fistula track due to further abscesses not healing the wounds.

2) for me pain relief is a hot bath, sitting on a heating pad, calmoseptine cream and the occasional oxycodone if it is bad enough.

3) my crohns has me so wiped out sleeping is not a problem, getting up sometimes is.

4) I am in the US.
__________________

Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

_____
Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
12-13-2013, 11:39 AM   #3
dgg
 
Join Date: Feb 2011

My Support Groups:
Hi Mr M. I also have a horseshoe fistula and know how hard it can be to treat such a complex kind of fistula. The treatment I've had sounds different than yours but it finally seems to be working. Initially I had 3 setons put in (all connect to the primary opening). One seton was in my posterior and the others went down the side of my butt cheeks (one on each side). I also started Remicade and Azathyoprine). I kept having issues where the fistula tracts would get infected and painful so I'd go back on Flagyl and cipro. I had to have several more incision and drainage procedures to try and clean out the tract but usually a few weeks later the pain and discomfort would get too much.

I finally decided that I had enough and this past summer I had surgery for an ileostomy to allow the area to rest. This dramatically helped me and while I continued to have drainage, I didn't have much pain anymore. 3 months after the ileostomy my surgeon tried an advancement flap. It has been almost 4 months since that procedure and so far I am feeling great. Most days I have no drainage and occasionally I'll have a few spots but nothing major. I was scared of the ileostomy at first but now I am so well adjusted to it and having this is so much better than having an active fistula. Are you on any medications? I know that Remicade is supposed to be the best for fistulas. Good luck and hope you find some relief soon.
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