UC to J-Pouch Story

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

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

  1. PaperGirl said

    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

  2. gknafelc said

    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

  3. Jaclyn Suri said

    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.

  4. gknafelc said

    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

  5. 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

  6. Linda said

    Hi,

    Did you have to keep taking medicine after the surgery?

    Linda

  7. mark said

    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

  8. Tina said

    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

  9. Gina said

    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

  10. Hannah said

    I was diagnosed with UC when I was 12 years old. I had severe diesease and was taking pretty toxic drugs like Remicade and Azathioprine. I was refractory to steroids and things kept getting worse. In February,I was admitted to the hospital and admittedly put on bowel rest. Things kept getting worse like vomitting and pain and blood for stools. I had to have emergency surgery. I had toxic megacolon. It was a long surgery and pretty freaky when I woke up. That night it felt so like such a relief to have my colon out. But, I had major comlications. My kidneys started shutting down and the surgeons thought that i could possibly had internal bleeding. So, i was rushed back into the OR for emergency surgery. They found no bleed and later diagnosed me with Sepsis. I was put in the Intensive Care Unit and had a low blood pressure of 40/25. After a day and a night I was returned to the med/surg floor. I had a very slow recovery. My bowels wouldnt start working and I had two surgerys to remove peristomal abcesses and leftover fluid from my abdomen and my wound was constantly infected. I was in the hospital for 2 months post operative. I had my 16th birthday in the hospital actually! That surgery was 3 months ago and I’m living with a illeostomy at the moment. I have pyoderma gangoroseum (a rare skin disease that associates with UC) and am at high risk for crohns disease. I’m still counting on my next surgery though! I can’t wait to get rid of the stoma. But, it’s really not that bad. I’m so happy I won’t have to worry about colon cancer. Or those really toxic drugs and what not. I’m so happy to see that you have such a great attitude. As another 16 year old i can really relate to what your going through. You should be really proud on how you handle what your going through. I know a lot of people really admire your determination. Have you gotten your JPouch surgery yet?

    Hannah

  11. Ricko said

    Are you now fully recovered gil?

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