S
SoCalWildcat
Guest
Hey all I'm new to the forum, but not new to Crohn's. My name is Marc I'm 19 and I was diagnosed with Crohn's when I was 9 in my sigmoid colon. I was initially told my growth would be stunted which is hard news to take when you're a young aspiring athlete, however, I was able to remain in remission throughout puberty and I'm now 6'4.
I was an athlete all my life: I was a quarterback in football, I played HS basketball and volleyball. As high school was winding down with only a month left I started getting symptoms, and I knew immediately it was Crohn's once the bleeding started. I was now 18 and the pediatric GI doc I had been seeing for the past 9 years would no longer treat me -- the goose chase ensued. I spent a month in and out of two local regional hospitas where I was treated by 3 different GI physicians. Every treatment failed, and my body had been completely depleted from all the strong medications coupled with my inability to eat.
Finally, after losing 45 lbs (170 to 125) I was transferred to Cedars-Sinai in LA where I was treated by their world renowned Inflammatory Bowel Disease center. This is where the real nightmare starts. After about a week inpatient the doctors performed a colonoscopy and compared the results to the one I had a few weeks prior. The disease had spread rapidly and my colon was close to perforating.
In July 08 I underwent emergency surgery (my first surgery ever), where half of my colon was removed and a temporary colostomy was made. While still hospitalized, I developed an infection in the fascia which opened up the incision. I had to undergo a second operation to clean out the infection and close the abdominal wall up again. All in all I spent close to 3 months hospitalized.
I had received an academic scholarship to The University of Arizona, but I was unable to attend school the first semester while I recovered. I spent my time off rehabilitating my body and getting it back into shape, and by winter I was back to my normal weight -- though I was an 18 year old with a colostomy. My social life became non-existent and :depressed:.
With the severity of my condition and inability to sleep I had a plethora of painkillers and benzodiazepines. I got addicted to xanax and eventually overdosed. Waking up in the ICU 24 hours later with tubes and wires hooked up to me was a strange experience for sure.
After the surgery I regained remission which allowed me to attend U of A for the spring semester. After having a colonscopy during spring break my GI doc cleared me to have the colostomy reversal surgery, which I had done this past June.
I actually had two surgeries together. The colorectal surgeon reconnected my colon while the Beverley Hills plastic surgeon reconstructed my abdomen (which she billed my insurance for $32,000
). The surgery went well and I was out of the hospital in 5 days. However, a month later eating became very painful, the skin on my tummy became very sensitive, and I started having fevers. When my temperature reached 103 I called my surgeon and she told me to go to the ER. When the nurse in the ER told me to undress I looked at my belly and it was super swollen and red. I knew something went wrong.
The on call surgeon ordered a CT scan, and told me a fistula had formed from my colon to the skin, and the swelling was an abscess full of stool. The surgeon had to make an incision to drain the abscess and stool from my colon. This was devastating because I now have to wear a bag (AGAIN :ymad to collect drainage from the fistula while it heals. Oh the irony of reversing the colostomy to eliminate the bag, and ending up with one anyway. If the fistula doesn't heal on its own by December I will be having another surgery to repair the tear in my colon.
Currently, I've been having symptoms on and off for the past 2 weeks including bleeding. I started on Humira in addition to the 6mp I've been taking, but life is miserable. My abdomen looks like I got mauled by a lion, and I can't gain weight.
I'm 19 and life sucks. Thanks for reading.
I was an athlete all my life: I was a quarterback in football, I played HS basketball and volleyball. As high school was winding down with only a month left I started getting symptoms, and I knew immediately it was Crohn's once the bleeding started. I was now 18 and the pediatric GI doc I had been seeing for the past 9 years would no longer treat me -- the goose chase ensued. I spent a month in and out of two local regional hospitas where I was treated by 3 different GI physicians. Every treatment failed, and my body had been completely depleted from all the strong medications coupled with my inability to eat.
Finally, after losing 45 lbs (170 to 125) I was transferred to Cedars-Sinai in LA where I was treated by their world renowned Inflammatory Bowel Disease center. This is where the real nightmare starts. After about a week inpatient the doctors performed a colonoscopy and compared the results to the one I had a few weeks prior. The disease had spread rapidly and my colon was close to perforating.
In July 08 I underwent emergency surgery (my first surgery ever), where half of my colon was removed and a temporary colostomy was made. While still hospitalized, I developed an infection in the fascia which opened up the incision. I had to undergo a second operation to clean out the infection and close the abdominal wall up again. All in all I spent close to 3 months hospitalized.
I had received an academic scholarship to The University of Arizona, but I was unable to attend school the first semester while I recovered. I spent my time off rehabilitating my body and getting it back into shape, and by winter I was back to my normal weight -- though I was an 18 year old with a colostomy. My social life became non-existent and :depressed:.
With the severity of my condition and inability to sleep I had a plethora of painkillers and benzodiazepines. I got addicted to xanax and eventually overdosed. Waking up in the ICU 24 hours later with tubes and wires hooked up to me was a strange experience for sure.
After the surgery I regained remission which allowed me to attend U of A for the spring semester. After having a colonscopy during spring break my GI doc cleared me to have the colostomy reversal surgery, which I had done this past June.
I actually had two surgeries together. The colorectal surgeon reconnected my colon while the Beverley Hills plastic surgeon reconstructed my abdomen (which she billed my insurance for $32,000
). The surgery went well and I was out of the hospital in 5 days. However, a month later eating became very painful, the skin on my tummy became very sensitive, and I started having fevers. When my temperature reached 103 I called my surgeon and she told me to go to the ER. When the nurse in the ER told me to undress I looked at my belly and it was super swollen and red. I knew something went wrong. The on call surgeon ordered a CT scan, and told me a fistula had formed from my colon to the skin, and the swelling was an abscess full of stool. The surgeon had to make an incision to drain the abscess and stool from my colon. This was devastating because I now have to wear a bag (AGAIN :ymad
to collect drainage from the fistula while it heals. Oh the irony of reversing the colostomy to eliminate the bag, and ending up with one anyway. If the fistula doesn't heal on its own by December I will be having another surgery to repair the tear in my colon. Currently, I've been having symptoms on and off for the past 2 weeks including bleeding. I started on Humira in addition to the 6mp I've been taking, but life is miserable. My abdomen looks like I got mauled by a lion, and I can't gain weight.
I'm 19 and life sucks. Thanks for reading.
