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Crohn's Disease Forum » Surgery » Stoma Subforum » Enterocutaneous fistula 1yr+ surgery not option


02-03-2017, 05:45 AM   #1
jyf1964
 
Join Date: Feb 2017
Enterocutaneous fistula 1yr+ surgery not option

I am posting to try to find help for my 82 yr old mother. She doesn't have crohn's but desperately needs help with fistula care. She had bowel resection a year ago and the wound wouldn't heal. She has had wound healing issues for years from multiple abdominal surgeries that started with hernia, then gallbladder and 4-5 from abdominal abscesses from lost gallstones. Last year they hooked her up to wound vac and the dr at the clinic dialed the pressure to 175 and to make a long sad story short, it sucked a whole into her small intestine. She was NPO for 6 weeks with just IV nutrition. The drainage had pretty much stopped. Throughout this time, we had no success with wound care. She was overweight but had lost weight and the hanging skin made sealing ostomy bags impossible so we dealt with it with lost of sponges, gauze, and abd pads. Well one day after a trip to visit her sister it cut loose with a vengeance. The surgeon that did the resection made it very clear that he was not interested in EVER operating on her abdomen again. With the fat, scar tissue, her age, etc. He is one of those "i like easy surgery" guys to begin with. Mom had pretty much said when it opened back up that no more surgery, she would "just die" but you know, you still have to deal with the drainage as you are waiting and you kind of need someone to "oversee" you. Another surgeon at the same hospital understands her wishes as to no surgery but he continues to see her every few months to just touch base with her. He feels that there is more mesh causing it to not heal (as in the first surgeons notes he had to remove some mesh when doing that surgery). Her drainage goes from hardly any to needing dressing changed 3x day. She doesn't leave her house except for dr appts. She is spending enormous amounts of $$ on dressing supplies. At times her skin is so raw and sore that she ponders on a surgery knowing the outcome might not be good. She about died a few years ago after one of her operations...What I am hoping to find is someone out there that has an enterocutaneous fistula where surgery isn't an option and what types of drainage management works. Right now we are using desitin around the "hole" and on any macerated skin. A non-deodorant super taxpax pearl tampon laid on it, then 2 drainage sponges, another gauze pad, 1/2 of an abd pad and this all covered with an abd pad and the only tape we use is hypafix. It is costly but doesn't break her skin down. Her drainage chanegs from day to day, orange, brown, bloody, clotty, gray. Right now it is clotty I believe from her taking advil daily for the burning of her skin. We are all weary. My sister and I can never be gone at the same time because we have to be on call for a "i'm leaking" call. Luckily we have a family business but I live 30 minutes away and feel like i am on the road constantly trying to keep ahead of the drainage so it doesn't destroy her skin. I need ideas for cream or anything that helps with keeping the skin intact. It kind of goes in like a belly button so ostomy appliances just don't seal. Any help will be greatly appreciated. She is desperate.
02-03-2017, 06:15 AM   #2
GI Jane
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Join Date: Jan 2017
Location: Yakima, Washington

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I'm sorry...with your late posting I can tell your hurting and desperately trying to find answers we all so understand that place. New-Skin worked for me with certain skin issues I've had, but I've never had anything like what your mom is going through.

Thoughts and prayers and hopefully someone out there can help more.
02-03-2017, 09:17 AM   #3
Lisa
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Join Date: Apr 2010
Location: New York

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I am posting this also in the stoma sub forum where I hope you will get some good answers.

Sorry you are going through this with your mom, you and your sister are to be applauded for doing what you do...
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