I was diagnosed with Crohn's in my sigmoid and descending colon when I was 9. I was told my growth might be stunted, which sucked because at the time I was on a club basketball team, and was a QB in pop warner football. Luckily my growth was never stunted, and I ended up taller than first projected before I was diagnosed with this horrible disease. I lead a normal life for 9 years after being diagnosed. I had one minor flare up the summer after my freshmen year of high school when I was 15, but I was only hospitalized over night as the remicade infusion worked a miracle. During this long period of remission I was on 6mp and Asacol, which seemed to be working well. I had blood work done every 6 months to check the 6mp levels and adjust the dosage in accordance with the test results.
However, my nightmare began when I was 18 and in the last month of high school. Prom was a couple weeks away, graduation a month away, and college 3 months away. Out of nowhere I started getting cramps with subsequent bleeding. I ended up overdosing on vicodin during prom, because the pain was so severe, yet I was determined to make it through the night. As all this was unfolding I had no GI doctor, because he was too busy to see me right away. So, I went to my regular physician, who hospitalized me and brought in a GI doc. After the colonoscopy confirmed the flare up, I spent a total of 16 days in and out of local hospitals over the course of a month with my condition worsening. Before I got sick I weighed 165lbs (I'm 6'4 keep that in mind while you read this), after 2 weeks of being sick I weighed 145lbs. I was then transferred to Cedars Sinai Medical Center in LA, where they have an Inflammatory Bowel Disease center, and some of the best physicians/surgeons in the country. There, they spent a week doing all sorts of tests/biopsies, after everything coming back negative, they decided to do another colonscopy. After seeing how rapidly the disease was spreading throughout my colon, the inevitable happened...
It was friday and I was chillin in my hospital bed, watchin the dodgers, when the GI doc came in and told me surgery was scheduled for Monday. I didn't really know how to react to this, but the surgeon came in and told me it had to be done or my colon will perforate. She explained to me that she would first try and do laproscopic surgery and try to reconnect me so the scarring would be minimal andI wouldn't have a colostomy. Unfortunately, after she (yes my surgeon was female) looked in with the laproscope she noticed the crohn's had spread in to my transverse colon and was already perforated. They had to make an incision and perform a colostomy.
At this point I was on the highest dose of dilaudid (3.5mg every 3 hours), and when I woke up from the anesthesia they decided to give me .1mg every 7 minutes via a pump that I controlled. So, naturally taking 35 times a smaller dose, isn't going to do a god darn thing and I woke up moaning and screaming. It really felt like someone had dissected me. It felt like someone took a pitch fork to my abdomen and then removed all my organs. There was no physician in the recovery room, and the retarded nurse didn't call one in to raise the dosage of dilaudid. So I was in severe pain until the next morning when the "pain management team" came in and raised the dilaudid to .7mg every 7 minutes, and gave me an 80mg fentanyl patch. So then they made me get out of bed and take a few steps... I don't know how many of you have had abdominal surgery after losing 40 pounds, but it took me about
a half hour to get out of bed with the help of 3 nurses and my parents.
3 days after the surgery, they started allowing me to drink water and eat a little bit. Unfortunately, I had developed ileus (bowels shut down) and was throwing up nonstop. Throwing up was also extremely painful, so they had to put an NG tube down in me. Having a massive suction tube all lubed up stuffed down your nose into your stomach 3 days after surgery isn't pretty. So, I started feeling better and was progressing fairly well with the help of TPN. Getting out of bed still took a loooong time to do, but I was able to walk for 10-15 minutes without stopping. Then one night I went for a walk with my nurse, and fluid started leaking out of my incision
The resident surgeon came in the next morning (around 6 AM) and took out a couple of staples from the incision, and told me the fascia (muscle underneath) was infected, and the sutures had come apart. He told me to lie flat or my intestines could fall out (that was probably hyperbole, but an effective way of stressing the seriousness). At around 7 AM the resident surgeon comes back in and tells me surgery is scheduled for the afternoon to clean everything out, and close the fascia back up. When the my surgeon came in to talk to me, she told me the skin would have to be left
open to allow the infection to drain, so she put tension sutures to hold the skin in place. 21 days, and 2 surgeries later I was released from Cedars Sinai July 30th -- coming home never felt so good.
Unfortunately, my life got pretty messed up. I spent my whole summer after high school, hospitalized and recovering from surgery. I was now 18 with a colostomy, and was unable to move away to college. I had lost a total of 40lbs, so I was now 6'4" and weighed 125lbs. I had an
open wound that I had to clean and pack twice daily, and I felt like a prisoner. However, I have always worked hard and was always determined to overcome obstacles. I began consuming as much calories and protein as I could without eating junk or fast food... Within two weeks of being home from the hospital I was out driving and hanging out with my friends again. The weight gain was very slow at first, and patches of my hair had begun falling out from my lack of nutrition. I was determined to resume a normal life despite these pitfalls. Every visit I had with my surgeon I would ask her how long until I could start lifting weights again... about
2 months after the procedure Dr. Moore cleared me to start lifting light weights. This was the best news I had received in a long time, and after about
a month of stabilizing my deteriorated muscles, I began real lifting.
I had deferred college entrance until this spring semester of school, and was taking online community college classes so I could stay on my parents medical insurances by being a full time student. Since most of my friends had moved away to college, I spent all my time rebuilding my body through nutrition, exercise, and therapy. I was lifting 5 days a week, and jogging a few times a week as well. I was definitely surprised how fast I was recovering, it seemed like everyday I could do something I wasn't able to do the day before.
Now I did all this, because I was told I was going to have the colostomy reversed in 3-4 months, so I could start school in January without the colostomy. We were aiming for middle of November to early December to have this procedure done. So, I had a colonoscopy at the beginning of November, unfortunately, the part of my colon that was not attached was still inflammed, so my physicians wanted to wait 6 more months (this May).
Inevitably I sucked it up and moved out to Arizona to attend U of A despite having a colostomy this semester. I'm now 19 and double majoring in Finance and Pre-med, and for some reason decided to join a fraternity. It's been 8 months since surgery and I now weigh 175lbs thanks to my gym obsession. I have no dietary restrictions, and no physical restrictions... however, my life sucks because I'm in college and a fraternity, and I can't hook up with girls at the moment due to the colostomy. When I go home for spring break in March, I will have another colonoscopy, and then schedule surgeries for the second week in May. A plastic surgeon will perform an abdominal reconstruction during the colostomy reversal, so we are going to hit two birds with one stone.
So hopefully if you read this your life is better than mine!
P.S. If you are in the LA area and need specialists I have a couple reccomendations:
My Gastroenterologist: Andrew Ippoliti
My surgeon: Beth Moore
If you want to throw up and see the post op wound: