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First, I'd posted prior to my surgery in the Need Advice Now section. Thanks to everyone's words of encouragement there, it helped me to prepare for surgery. After nearly 25 years of having moderate Ulcerative Colitis, I knew this day would probably come..

My surgery was on Monday, February 3rd at the Medical University of South Carolina and took 8 hours. Good thing I was asleep. Everything was done laprascopically, so a little less invasive. A total of 5 incisions were made. I had a great surgeon and medical team. My large intestine and rectum were removed, a J-Pouch created and a temporary ileostomy was "installed". A few days after surgery, they informed me that post-op lab tests had discovered I actually had stage 1 cancer, but it had not spread. I'm so thankful I went ahead with the full surgery. UC and Cancer free!

The first day of recovery in the hospital I was kind of out of it, the second day turned out to be pretty painful as I started moving around more. I was released that Friday and went home. I found pretty quickly that I absolutely abhorred the pain meds they sent me home with, Lor-tabs or something. So, after about 3 days I took myself off of them, and being totally honest here, used Marijuana (in a vaporizer) to help dull the pain when needed and get my appetite back. I did that for 3-4 days, started feeling a lot better and my appetite returned. I have not taken any pain meds (of any kind) since a week after leaving the hospital. I feel blessed for this.

Dealing with the new reality of the ileostomy is more mental than physical. It freaked me out for a few days I'll admit! Then I just decided to get over it. It's waste, it was food just a little while ago, now it's been processed. Get over it and get on with life. If I had to deal with this for the rest of my life, I would not like it, but I could handle it.

I meet with my surgeon today for the first time since leaving the hospital, to check on how I'm doing and possibly discuss the next steps to take-down surgery.

I'm still figuring out my diet, with an eye toward the future of the J-Pouch and adjusting to that. So far, Cheerios with almond milk and bananas are a stand-by. But I'm hopeful that at some point in the near future, I'll get back to something that's acceptable, and will allow me to live a full life. I turn 44 next week - I'm only half-way there :-)
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Sounds like you are doing great! The biggest hurdle is "getting over yourself," basically accepting that it is OK to let go of what you thought was normal. I feel that normal is being healthy and happy. How you get there does not matter.

It is not too uncommon to find early cancer in colectomy specimens with long standing UC. That is why docs get nervous as you approach 20 years. They can't biopsy the whole organ without removing it...

With your attitude, you should do well. There will be setbacks, so don't assume they mean anything ominous.

Good luck and thanks for sharing your story.

Jan Smiler
Last edited by Jan Dollar

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