Photos: Gil (16yrsold)

Im Gil and this is my transformation story from Ulcerative Colitis to a J-Pouch.

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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.

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And the lovely scar it left after they took it out…

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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.

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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

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My first time changing the bag at home by myself.

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And the cover so no one has to know I have an ostomy.

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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

33 Responses to “Photos: Gil (16yrsold)”

  1. avatar

    PaperGirl says:

    October 27th, 2008 at 11:16 am

    Hey, Gil:

    So great to read your story. I’m in the hospital right now, too. IV hook-up, terrible UC flare-up, the works.

    I’m pretty sure I’m going for the J-pouch surgery, too. It’ll be a three-stage process like yours and I’m thinking it could happen as early as next week. Thank you, thank you for the candid posts and pictures. I’m scared, but I’m not gonna be a wuss.

    :)

    You rock. I hope you continue to feel better and be a badass.

    Best,
    Mary

    [Reply]

  2. avatar

    gknafelc says:

    October 28th, 2008 at 12:26 am

    The best thing to do is to keep your chin up. All the pain will be over soon and you will feel so healthy. While I was in the hospital, I thought of all the things I could do and eat after the surgery when I didn’t have UC anymore. It will all be over soon. I found it also helped finding people to talk to who went through the same thing. If you need to chat or have any questions about anything feel free to ask. Keep holding in there and good luck!

    Gil

    [Reply]

  3. avatar

    Jaclyn Suri says:

    October 30th, 2008 at 8:30 pm

    Hi Gil,

    I just went through stage one myself. Just like you. How are you doing with the ileostomy bag? I am having a hard time emotionally with it.

    [Reply]

  4. avatar

    gknafelc says:

    October 31st, 2008 at 1:50 am

    I had to push through emotionaly for the first couple days. I had some tears and “why is this happening to me” break down about day three after surgery. But, I desided, you know what, Im not in pain anymore. The ileostomy isn’t gross, its beautiful. And its part of you. If other people aren’t ok with it, and cant accept it as part of your being, then screw them. Keep your chin up, and embrace it. Look towards the future. The bag is only temporary anyhow! I feel so lucky to be able to have an ileostomy and not have to suffer through colitis anymore. I learned that it helps to think of all of the things you can do now, that you couldn’t do with UC before. In the big picture, things could be worse :) Hope I helped!
    Gil

    [Reply]

    avatar

    William Reply:

    Hey Gil, how bad was the pain? Was it hurting every minute you woke up? I want to know more about the pain because thats what I fear most right now. Right now I have really REALLY bad abdominal pain and I’m 21 years old an d a strong guy who doesnt have a hight threashold for pain… I stabbed myself in the finger once to the bone while carving and it didn’t really hurt too much. My pain is so bad I can hardley breathe or talk or even standup and walk… It often feels like some one is stabbing me even though I’ve never been stabbed before… is the pain from the surgery like this or worse or not as bad? I appreciate your answers thank you and good luck!

    [Reply]

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    William Reply:

    Oh, and the pain is from my UC my docters believe I’ve been back and forth with them and still am and its very irritating…

    [Reply]

  5. avatar

    backyardmusings says:

    November 5th, 2008 at 6:03 am

    i’m a friend of your mom’s. i’m so proud of you. you are quite a strong lady. you have a great attitude and I have no doubt that your life only gets better from here. As someone who suffers from IBS, I can only imagine the relief you must feel to not have to scope out bathrooms anymore.
    hugs to you, keep fighting!
    rae
    http://www.backyardmusings.wordpress.com

    [Reply]

  6. avatar

    Linda says:

    November 9th, 2008 at 9:59 pm

    Hi,

    Did you have to keep taking medicine after the surgery?

    Linda

    [Reply]

  7. avatar

    mark says:

    November 11th, 2008 at 6:01 pm

    Hi Linda,

    I didn’t have to keep taking medicine other than after step 1, I finished a prednisone taper. I do take now with my jpouch metamucil and immodium to help thicken up and slow me down.

    Mark

    [Reply]

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    Leonard Gentin Reply:

    Thanks for your reply did you have a three stage procedure and its encouranging to read you doing well leonard

    [Reply]

  8. avatar

    Tina says:

    November 17th, 2008 at 5:04 pm

    Gil,
    You are SUCH an inspiration. I went through all three stages- last one was in july. I feel like a new person. It was tough but it’s all worth it in the end. You seem a whole lot stronger than I ever was going through the whole thing. I’d love for you to keep me updated on everything… stay strong and best of luck!!
    Tina

    [Reply]

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    Leonard Gentin Reply:

    tina i have had my entire colon removed and have opted to have the j/pouch in six months i am scared the second operation will be as painfull and recovery harder than first operration please could you advise me leonard e.mail gentinfamily@optusnet.com.au

    [Reply]

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    Mark Reply:

    Hi Leonard, I had a much smoother 2nd surgery recovery for my jpouch than the first. It may help you read my jpouch surgery recovery journal http://www.jpouch.net/2009/12/21/update-2/

    [Reply]

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    Leonard Gentin Reply:

    thanks for replying did you have a three stage procedure ortwo stage encouranging to read you doing well leonard

  9. avatar

    Gina says:

    December 5th, 2008 at 3:16 am

    I had UC for 15 years, finally having to have my colon removed this past February. I had the 2-step procedure, but due to complications with the incision after each surgery(the second one in May), I ended up having an out-patient surgical procedure, followed within days by emergency surgery (I had developed a fistula in my small intestine where the iliostomy site was, so had 3 inches of that removed), exactly one month after the second surgery. In all, I had 4 surgeries in 4 months. I am 42, and I was diagnosed with my disease at the age of 27, just weeks after becoming engaged to be married. I went on to have 3 children, in amongst the flares and bad medication experiences. I put off the surgery for years, until I had no choice. I was rid of my iliostomy pouch in May, thankfully. I am now living as normal a life as I could expect (nighttime incontinence is my only issue at this point, but it’s still early on and my body is still recovering), which as you know is vast improvement over living with UC.
    Aside from my own journey, I want to let you know you are not alone. What doesn’t kill us makes us stronger, and I know you will do fine. You have a wonderful attitude, and it looks like a great community of family and friends, which is key to keeping your sanity through all of this.
    If you have any questions, I will be more than happy to answer them for you. Good luck to you, Gil, and God Bless.

    Gina

    [Reply]

  10. avatar

    !!! says:

    October 19th, 2009 at 8:26 pm

    You are an AWESOME young lady…no more words to be said…simply AWESOME!

    [Reply]

  11. avatar

    caitlin says:

    August 7th, 2010 at 9:39 pm

    hi, my names caitlin.
    we dont know eachother but i was on google looking at pics to show my friends what i went through and i found you. and i read your story. i had the same thing but i was diagnoised with it at age 8 and i had to take 24 pills a day. it was horrible. i know what you went through and i know it was horrble but look at us now we are UC free and we dont have to worrry about all the flare ups. i would have too go ever other year for a flare up. i ahted it.. i basically lived in the hospital. but i just thought i would leave a comment. you can email me if you want to ask questions or whateverrr ?!

    [Reply]

  12. avatar

    drpravin says:

    September 2nd, 2010 at 12:58 am

    supergirl! sharing such experience notifies purity of sole. bravo! God Bless You…

    [Reply]

  13. avatar

    kyle williams says:

    October 16th, 2010 at 4:14 pm

    my name is kyle williams and im 13 and ive had a colostomy bag for 5 years and ive only just worked up the courage to have the reversal, ive had the jay pouch surgery but it didnt work so ive got to have a tempory stoma witch is annoing it always leaks.ive got a leak in the jay pouch and i feel like my life is over.the only think keeping me going is my mum she is the best mum in the world i couldnt of done it without her i love her so mutch

    [Reply]

  14. avatar

    carol says:

    November 16th, 2010 at 8:32 pm

    hang in there kyle remember that the best gift we have in life is the ability to breathe and survive into a paradise world. Don’t get discouraged hang in there 

    [Reply]

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