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
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
