Update on My Ulcerative Colitis

Nothing worked for me. SCD diet, Prednisone, Remicade, nothing. My colon was very severe. Surgery was the only option.

So here is my update. I had to come back to the hospital on Feb 15 because the second round of Remicade wasn’t working and the scd diet wasn’t working either and I wasn’t seeing any improvement. When I went back into the hospital, they gave me a stronger dose of Remicade and I was back on the Prednisone for a week to see if that helped. No improvement after the week and so the only thing left to do was to have surgery to take out my colon….the first step of the J Pouch surgery.

This came as a huge shock to me of course because i was just diagnosed on Jan 14, 2011, and I am already in need of surgery!

They said that my colon was very severe though so I guess this is the best option for me and my well being. I had the surgery this past Saturday and I feel better without having that infected colon inside me, but I am just in pain from the surgery itself you know? The surgeon said that when they take the colon out, it all comes out in one piece, but when she took mine out, it was falling into pieces! This is good news though because that means they got it out before it actually perforated and infected my insides. I probably had about 24 hours until that would have happened, so that is good news. So right now, it’s just about recovering and learning how to live with my ileostomy pouch for about 4 months until they make the j pouch inside of me and take the ileostomy pouch out. But after all is said and done, I should be back to normal for the most part, able to eat whatever I want to in the long run, play my sports, go back to school and work, all of that good stuff, it’ll all just take some time. I have a friend who had the same surgery and he’s living in France now getting his Masters in Computer Science and is eating and doing whatever he wants to, so that is encouraging.

Well thats my update for now, I hope everyone finds a way to recovery that works for them, this was my last option so I had to do it….hope it works out!


4 thoughts on “Update on My Ulcerative Colitis”

  1. Thanks for sharing Anonymous-UC’er. I have to tell you the notion of surgery scares me to death, but maybe if you could share more about what an ileostomy pouch and a j pouch is, it would help calm the fears. I’ve heard that doctors can perform some type of surgery where you don’t have to where a “bag” the rest of your life and you can return to normal. Is that true?

  2. Hi Curtis, thanks for sharing your story. I find out this coming Friday if I will be having surgery to remove part of my colon, I’m pretty sure I will as my consultant sent me for x-rays the other week and told me my colon was badly infected and had narrowed which explains why I am in such pain. When the consultant first told me I was quite relieved as my immediate thought was ‘at last an end to the pain’ but now as time draws near I am getting a bit apprehensive. Like Jerry, the thought of surgery scares me half to death but I did speak to my doctor who said its just a routine procedure and although I might have to wear a pouch for a short while, the discomfort would be worth it. I hope you go on well, please keep us up to date with how things are going.

  3. Curtis,
    My doctor is also talking surgery as I have gone through the Remicade the Humira and am now on Imuran. I’m trying the SCD diet now, but I am finding it extremely restrictive and my energy is low. I have done a lot of research on the ileostomy and the j-pouch. It seems so drastic! Thank God you did it when you did and did not have to suffer through any further complications. Please do share your story as you progress, I would love to hear about your success. I wish you the absolute best and the speediest recovery. Stay positive. God Bless.

  4. Hi, just wanted to share my experience. I had UC for 16 yrs and after having a flare-up, and being given strong antibiotics, in 2009 my colon perforated. I had to have emergency surgery to save my life. They removed my entire colon and gave me an ileostomy. After 3 months in hospital recovering I finally went home. Took me a while to get back on my feet after that whole ordeal. If I had time back, I most likely would have chosen surgery alot earlier, but like most, I was beyond scared of it. Since having the surgery I’ve done awesome. I’m now fully recovered. Unfortunately for me, I also have renal failure so I can’t have reconstructive surgery (otherwise known as pouch procedure), so I have to live with the ostomy. It’s a bit of a drag, but at least I’m still here and I’m doing well. I have a good friend whom I’ve known my entire life who also had UC. She, too, ended up needing surgery and quite soon after diagnoses. Her colon was in really bad shape, as well. She had an ileostomy for 13 months. Then she had the j-pouch procedure done. That means they used the end of the small intestine and fold it back on itself, like a J, and open it up to form a pouch inside. They attach it to the rectal muscles/anus. Once healed this allows you to resume a normal life. She has since gotten married, and has had two children. So, to finish up, surgery is scary, but so is ending up with a perforated colon. And if all goes well, you’ll feel soo much better after having that diseased organ removed. Another bonus, you’ll most likely no longer require any medication. Good Luck. :-)

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