Crohn's Disease Forum » General IBD Discussion » Suffering from ABDOMINAL FISTULA - despair and hopeless


02-27-2018, 12:24 AM   #1
Crohnsdestroys
 
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Suffering from ABDOMINAL FISTULA - despair and hopeless

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, 12:40 AM   #2
ronroush7
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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
Hi, Patrick. I am truly sorry for all you have been through. I don't have any answers but I am sure that someone on the forum here will be able to help. Let us know how you are.

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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.
02-27-2018, 01:26 AM   #3
cmack
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Welcome Patrick,

I hope things improve for you soon. Give me a shout any time.
03-04-2018, 08:20 PM   #4
Sojourn
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I don't understand everything medically, but I wonder why they cannot remove the part of the intestine from which the fistula has developed and do a resection. I'm sure there must be good reason or they would have done it.

I had a fistula in 2007 which was attempting to grow out of my stomach, reminds me of Alien movie. At that time they did a surgery to open the stomach and allow the fistula to drain out temporarily. This sounds similar to what you had done. Mine was called a temporary ostomy. I had a bag for the fistula drainage. Once that was under control, or something, they went back in and took out half of my right colon including the fistula and affected area. The resection was successful and I went on Humira and lived happily ever after, kind of.

But the fistula was gone along with part of my colon. Sorry to hear of your problem's with opiods. This has been an ongoing concern of mine with Crohn's as a former drug addict. But I really prefer marijuana. Unfortunately I have a job where I am drug tested and cannot be on either consistently. But during my recent problem, gallstones, I was thinking how great it would be if I still had all my former drug contacts for good marijuana.
03-04-2018, 09:40 PM   #5
cmack
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MMJ can be a good option for those who can partake legally.
03-05-2018, 11:24 AM   #6
Bufford
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Medical pot is not difficult to access when one has a diagnosis. It doesn't hurt to try applying. I found it very easy and I was able to place an order on the same day I was accepted. All you need is a medical document stating you have a medical problem, in my case Crohn's from a doctor, make a phone call for an appointment and its pretty much automatic from there.
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