Photos: Gil (16yrsold)
Im Gil and this is my transformation story from Ulcerative Colitis to a J-Pouch.
I was diagnosed with Ulceractive Colitis (UC) when I was 11 years old. Ulcerative Colitis is a type of IBD (Irritable Bowel Disease). It is closely related to Chrones except UC affects only your large intestine (colon). When you have Ulcerative Colitis, you don’t have much control over your bowels. When you have to go to the bathroom, its always urgent and very painful. Stools are also usually diarreah and bloody. My UC was always worst in the mornings. This made sleep overs difficult. I would lock myself in the bathroom at night and sleep on the floor so I could have access to the bathroom in the morning or when I had a colitis attack. I carried around extra underwear and pants with me all the time. And if I was having a tough day I would wear a pad on my underwear to give extra protection in case I didn’t make it to the bathroom. When you have UC you know where every bathroom in the world is and how long it takes to get there!
At the beginning of September I went into a flare. I started puking and the only thing that my stools seemed to consist of was blood. After two weeks of this, my mom took me to the emergency room. They gave me I.V fluids to hydrate me and morphine to calm the pain then sent me home. Another week later, I was getting worse. We went back to the ER. This time they did a CT scan of my stomach. We couldnt tell much becauseeverything in there was so inflamed. They admitted me to the hospital on he terms “possible apendicitis”
Over the next few days, they gave me I.V fluids, and upped my colitis medicine to try and calm things down. About day 3 in the hospital i tryed eating some vegetable broth that came violently back up. So that was it, no food for me for the next 3 weeks. I was to be put on complete bowel rest. To do this and give me proper nutricion, they put me on TPN (Total Parental Nutricion). They put a picc line in my arm. Its like a super I.V. They insert a long tube into your upper arm and thread it through a major vein into your superior vena cava. It hurt.
Here is a picture of my PICC line.
And the lovely scar it left after they took it out…
After a week of TPN and all the midicine they could think of to give me, we got a visit from the surgeon. We desided that remission just wasnt likely and my colitis was so bad it would be best if we took the darn colon out. I would have to undergo another 2 weeks or so of TPN and 2 blood tranfusions to get ready for the first surgery.
So here my journey began…
First Surgery: The first surgery was to remove my large intestine. I wasnt healthy enough yet for them to make the J-Pouch. They just needed to get the darn thing outa there. My sugeons exact words after the operation were, “That was one sick colon!” He said it was the worst one he’s seen. We gave him a disposable camera to take into the OR with him to take a picture of my large intestine when he took it out. Funny, they ended up taking out my appendix after all! They made an incision around the top of my belly button and about 7 inches down. next to my belly button they put the stoma and created an ileostomy.
This was 5 days after the first surgery while changing the colostomy bag.
The red thing next to the incision is my stoma. I named him Rover. They took part of my small intestine and stuck it out the side of my stomach. This is called an ileostomy. I wear a bag over it to catch my stool. Other than surgical pain, it doesnt hurt anymore! I can sleep through the night, walk around and not have to worry about getting to a bathroom before its too late, and eat pretty much whatever I want. The ileostomy is only temporary though. Which is fine by me. NO MORE UC! Recovery from the surgery was the worst part I think. When I woke up, I was in so much pain. There was an NG tube up my nose through my throat to drain out my stomach. That was by far the most uncomfortable part. They gave me a button so I could have morphine every 10 minutes if I needed it. I was in so much pain, I over pressed the button. Morphine compromises you respiratory system so every time I fell asleep, I would forget to breathe. They finally had to put an oxygen tube in my nose so i could get some rest.
Getting ready to go home finally after a month of being in the hospital
My first time changing the bag at home by myself.
And the cover so no one has to know I have an ostomy.
Surgery number two is when they are going to go in and make the J-Pouch out of my small intestine that will do the large intestines job. I wasnt healthy enough for them to do that while they were in there taking out my large intestine, so i have to wait until Im healed so they can do surgery number 2.
Surgery number three is the “take down” surgery. Thats where they remove the ileostomy and hook up the J-Pouch. After I heal from the surgery, I will be as good as new and totally UC free! Good-bye and good riddence!
If you have any questions feel free to contact me at Thatxgilxkid@yahoo.com