Considering colon removal for UC - need advice!

I have UC and am currently on Balsalazide, Prednisone, and getting Remicade infusions, and nothing is working. I feel I am worse now than before. I want my life back, so I am seriously thinking of having my colon removed. I guess I am looking for some advice. I am prepared to live with an ostomy just to live a somewhat normal life again. Am I crazy to get it removed? I would love to hear from someone who has lived with this and to be honest about their life with an ostomy. How long did it take for recovery after surgery and how long it took to get used to having an ostomy.

Thank you!

Hello, my name is Denise and I have a permanent colostomy bag since December 2016 due to IBS and severe constipation and nerve damage in the rectum from a total abdominal hysterectomy. I was miserable, could not poop on my own, had to use a glove every time. I started vomiting stool in October 2016. The surgeons said there was little they could do because the colon on the left side stopped working. Believe it or not, I'm glad I have "Stinky" - that's the name I chose. Is it an adjustment? Yes, because I have this for the rest of my life. Now, Stinky works better this way. Was I nervous? Yes.

But I'm so glad I did. I have a wonderful surgeon for life if anything goes wrong. So if you need the surgery, feel it's okay. We've been there. Just keep us posted. Nice to meet you.

Thank you for that! Just knowing there are people out there that will give you support and encouragement really helps. How long was your recovery and how long did it take to get adjusted to the ostomy? There are also so many products out there, how do you choose which one is the best fit for you? I have so many questions.

SHRONB,

Welcome to the site! There are several posts that refer to your question. Below is a link to one of them but you can do a search at the top of the screen to look at some of the older posts that may help clear some things up.

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=7563

And we are all here to answer your questions to the best of our ability. So ask away. Be sure to speak to your doctor and decide if you would like a total colectomy (entire colon and rectum removed) or a subtotal colectomy (a majority of the colon but the rectum is left intact). It makes a difference. My life is FAR better with an ostomy as opposed to my life before it.

You can look up all the different companies like Convatec, Hollister, etc., etc. and call them directly even before you get your surgery. Just tell them that you're looking at different ileostomy (I'm assuming that's what you'll have if you get your colon removed) supplies and you would like some samples. They will happily send you free samples.

Please feel free to ask anything as there are no stupid questions. We are very open here.

Bain

I lived with UC for 7 years until my colon was so sick it had to be removed. The recovery was slow and took a year before I could work again. I was told then (98) that it was necessary due to the overwhelming risk of malignant cancer. Be prepared for life-altering changes physically and psychologically. It will be an adjustment (understatement).

I have had severe fistulizing Crohn's for 30 years. I really had no quality of life at all. The only reason that I did not see a surgeon was fear. My rectum had gotten severely strictured and I finally saw a surgeon for a dilation and my colon perforated during the surgery. I had to have an emergency colostomy and the surgeon recommended a total proctocolectomy. I knew that he was right so I did it after several months of recovery from the first surgery. It was instant relief. Yes, the surgery was rough about 8 hours and I developed an internal abscess. After several months of recovery, I was much better. Looking back now, it was totally worth it. I would say find a good colorectal surgeon not a general surgeon, they are just better at it. It will be tough at times and a good support system family or friends really helps. Eventually, I believe that you will be happy that you did it and have a much improved quality of life. Hope that this helps. Good luck. Charlie

I don't think you are crazy. I am happy to be rid of my colon and have an ostomy after suffering so horribly for many years with Crohn's. Talk with a good colon surgeon and get their thoughts. If your docs can't get the UC under control, you may need to seriously consider other options.

I had my colon removed in November last year, after struggling with UC. I now have a permanent ileostomy. I can honestly say it's the best thing I've done. My surgeon was fantastic. I was back to work 9 weeks after... a little slower, but my quality of life has certainly improved.

Good luck

Hello SHRONB,

I'm 18 and had my colon removed on 17/3/17 as an emergency procedure due to toxic megacolon. I had a very rare case of UC that came out of nowhere and absolutely smashed me for a solid three or four weeks leading up to my surgery. No symptoms prior, just started feeling fatigued and having to go to the loo far more frequently and passing blood. All symptoms I'm sure you've experienced for far longer than I did. Perhaps it's me dreaming of the good old days of going to the toilet once or twice a day, or the fact that while I respect that the ileostomy saved my life, I don't think I'll ever like having a bag, having to factor changing it and emptying it into my day, and the interrupted sleep every night that makes me say that had the hydrocortisone or the infliximab worked I would have fought UC for as long and as hard as I could. Perhaps it is just the ignorance of my youth. The way it is this: a total colectomy is an irreversible, life-changing surgery. Unfortunately for me, I didn't have the luxury of considering surgery, meeting my surgeon for consultations, meeting the stoma nurses to learn about everything I'd have to do. I have no doubt that your experience with UC is vastly different from mine, but please don't forget the fact that once your colon is gone, that's it.

I can understand how someone who has had UC for a long time would consider surgery due to the idea of it removing the UC completely, and that is absolutely your decision to make, but if I had the opportunity I would have kept my colon for as long as possible.

Don't let me put you off if you are fed up with UC, because as I said, I only had it for less than a month before I went under the knife as an emergency. I also never experienced UC in the way that people have described insofar as going to the toilet 10 to 20 times a day. Fatigue is what destroyed me, but I'm going off track now. Be sure to consider the full extent of this surgery and what having an ostomy entails. For me, I have been alright with the physical change as I am quite good at getting a routine and sticking to it, but psychologically it has been pretty hard at times.

Thanks for reading, good luck with your decision. Whatever it may be.

Hamish