Crohn's Disease Forum » Your Story » Suffering from ABDOMINAL FISTULA - please help


02-27-2018, 12:32 AM   #1
Crohnsdestroys
 
Join Date: Feb 2018
Location: Fairfax, Virginia
Suffering from ABDOMINAL FISTULA - please help

Hello,

My name is Patrick and this is my first post here. I'm hoping to connect to others for advice and giving help.

I was diagnosed with Crohn's in 1997, live in Northern Virginia. I am a 40 year old husband and father of a 3 year old boy. The last couple years have been a nightmare on me and my family.

2 years ago, I had a lot of abdominal pain, and strictures throughout my small intestine. I had a small bowel resection to help out the pain and blockage. As a result, the procedure caused more problems as a small hole in the small intestine developed shortly after the operation in the hospital. I had a tube inserted into the side of my stomach to drain the area where there was leakage.

Last year, I had a procedure in Georgetown Hospital to fix the hole (fistula). They had cut out the area of the bowel that was leaking, and repair my abdominal muscle. After those painful operations, I was send home after some 2 weeks in the hospital. Then a few days later the stitched area down the middle of my abdomen got infected and had to go back. I woke up with a large open wound and had to wear a wound vacuum for a couple months after I got home. When it was taken off, I felt much better. Then I noticed that gas was coming through the wounded area again, then fecal matter. The fistula.

There have been 2 attempts to fix the fistula surgically, both failed. As I just wanted to be back to normal, working, raising my son and taking care of my wife, I've had to use a stick on large pouch daily. I have to change to a new pouch about every 2 or 3 days. It is a nightmare. I never know if I bend or twist too much that the pouch will begin to leak and soil my shirt and pants. After I eat, it sounds like I'm farting out my stomach as gas and liquid stool go into the pouch.

I've tried surgery twice, antibiotics for months, 3 stelara injections, lots of prayer and still the fistula will not close. Its destroyed my quality of life. Can't take a bath, can't go swimming, Can't take a shower without wrapping myself up with saran wrap, or exercise and play with my son like I should be. Been on social security and have had other family members help take my son to day care and care for him 5/7 days of the week, since my wife works full time.

I'm now trying to get a FIBRIN biological fistula plug from Cook medical. I just had the fistula-gram which will show what since plug I need. I don't know if it will work or not. I'm not even sure if the stool is coming out of one hole or another. It's hard to tell when you have a soiled bag. I'm so nervous about my future. It's been too hard on my wife, I don't think she can take another setback.

Also fell victim to the opiate painkillers about 5 years ago that pain management doctors thought would help my quality of life, but in the long run they just were soul-stealing in my case.


If anyone can relate or have any advice, I would be very grateful. This is a very isolating disease.

thanks, Patrick

Meds: Stelara injection 90mg/8weeks, flagyl antibiotic for fistula, clonazepam for terrible anxiety. suboxone for pain/opiate dependency
02-27-2018, 09:04 AM   #2
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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I am sorry for all you have been through. I have not been through this but I wonder if antibiotics by iv would help. I hope things are resolved soon. Keep us updated.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
04-07-2018, 12:27 PM   #3
CrohnieWifey
 
Join Date: Apr 2018
Location: Maryland

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Hi Patrick,
I've just sent you a private message in response to your post here. I hope that works for you instead.
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Crohn's Disease Forum » Your Story » Suffering from ABDOMINAL FISTULA - please help
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