Fluid collection and fistula

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steiconi
Posts: 1114
Joined: 2015-05-18 03:12:03

Fluid collection and fistula

Post by steiconi »

After my last surgery in 2018 for Barbie Butt, I developed a "loculated collection" of fluid that eventually created a fistula that has been draining for about three years. About 3 quarts a month, no diminution in size. Drip drip drip.

It puts pressure on my nerves, basically giving me sciatica, which is making me miserable.

Anybody else have something like this, or know of a discussion board for people who might?
Lee

I am not my disease.
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To Dream a Dream
Posts: 1414
Joined: 2010-08-10 18:35:53

Re: Fluid collection and fistula

Post by To Dream a Dream »

Dear Lee: Am so very sorry to learn you are dealing with this problem. I had a number of perianal fistulae after my initial gut surgery back in 1966. Went all thru high school wearing those bulky Kotex pads to catch the pus & blood that was virtually uncontrollable. The ostomy surgeries (2) in 1977 cleared them up including one to completely remove the rectum & anus. Yet I still panic if I see anything that resembles drainage on a panty liner.
I attempted to find a patient support group for you with a search & was unsuccessful. Although I did find this link: https://www.mayoclinic.org/diseases-con ... c-20352874 that may be worth a look. You may be able to find a phone number for an ostomy nurse at the Mayo who could direct you further as far as support goes. With all this new technology today, they may even hold some sort of virtual support sessions thru the clinic. It might be worth a try.
Please know you are in my thoughts & prayers. Your activity on this Discussion Board has been a great help to many over the years.
Crohn's Dx '66 (perforated ileum)
Multiple Bowel Resections
Ileo '77 Revision '85
Celiac Dx
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steiconi
Posts: 1114
Joined: 2015-05-18 03:12:03

Re: Fluid collection and fistula

Post by steiconi »

Thanks so much for the link and the kind words!
Lee

I am not my disease.
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steiconi
Posts: 1114
Joined: 2015-05-18 03:12:03

Re: Fluid collection and fistula

Post by steiconi »

FWIW, I found some kindred souls on Inspire through my post at https://www.inspire.com/groups/fight-co ... d-fistula/
Lee

I am not my disease.
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