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Complex Perianal & Ischiorectal fistulating disease

Posted: Mon Aug 08, 2016 1:10 pm
by kphilchris44
This is my first time posting here so apologies if there is a similar topic but I'm trying to raise awareness of a chronic condition my husband has lived with for the last 15 years. I'm keen to find out if there are other people out there with the same condition?

When this started in 2002 Ian's GP initially diagnosed hemorrhoids but, it was later found to be a perianal abscess and Ian was operated on to open it up to drain. The condition just didn't improve and he had a number of emergency operations before he eventually was sent for a MRI scan. At this point they found he had an 8cm horseshoe shaped tract that wrapped around his bowel and the colorectal surgeons had to cut through the outer anal sphincter to add a seton drain. He has a cavity of sepsis that sits in his pelvis and perineum the fistulas sit around the pelvic floor, into the anal sphincter and affect his prostate so that he can struggle to urinate when they are in the active phase which is about every 2-3 weeks.

Ian has had 25 operations to date and the condition is incurable, he's seen every colorectal surgeon in the North East and the top professor at St Mark's hospital in London. Ian was medically retired from his job in the chemical industry but in 2012 after 10 years the cavity of sepsis had drained away and he was offered a fistula plug operation that worked. For the next 3 years he got back to work so had a much better quality of life however in October 2015 2 abscesses flared up simultaneously and he was back in hospital for 2 emergency operations in one week to fit 2 seton drains as the abscesses are independent of each other. The company he worked for dropped him like a hot coal and since then we've been fighting the DWP, we went to tribunal and won but it's made little difference.

He has a lot of discharge which can be blood, pus and fecal matter he has uncontrollable wind that stinks and because he has sepsis, he often feels drained. The flare ups go in cycles of about a week where the wind builds, then the pus builds then the fecal matter comes away down the open wounds which hurts him. As there are 2 drains the abscesses flare up at different times so he rarely gets a peaceful time.

I'd love to know how common this is - this is not of Crohn's origin he has been tested, and because the anal glands anywhere in his bowel can flare up at any time the option of having a stoma won't stop the condition. As with Crohn's it is a lifelong condition but as it's not of Crohn's origin he doesn't seem to fit into any category. I'd love to hear of other people's experiences and I have written to Theresa May and my own MP to complain about the treatment he's experienced from DWP but that's another story!

Re: Complex Perianal & Ischiorectal fistulating disease

Posted: Mon Aug 08, 2016 9:05 pm
by talkhealth
Thank you for posting this in our forum. I hope other readers may be able to offer advice. I have shared your post on our twitter feed, in the hope some of our wider social media audience may see it and be able to also offer advice. I am sorry to hear you have had such a long struggle and haven't got the care and support needed.

Please keep us updated,