• My doctor recommended an ileostomy for colon cancer. Has anyone else had an ileostomy and what was your experience with it?

    Asked by StegalMan on Wednesday, December 19, 2012

    My doctor recommended an ileostomy for colon cancer. Has anyone else had an ileostomy and what was your experience with it?

    7 Answers from the Community

    7 answers
    • abrub's Avatar

      Please be sure to work with a colorectal surgeon who has the expertise to do the least necessary, and not just a general surgeon or oncologist. My colon was resected in 3 places. With any other surgeon, I would have ended up with a colostomy; with my specialist, I was reconnected perfectly, and my bowels work absolutely normally by anyone's standards.

      Depending on the extent and location of your cancer, you may not be able to escape having an ileostomy, but you give yourself the best chance if you see a specialist. Also, note that in many cases, ostomies can be temporary, while allowing the bowel to heal, and then you can be reconnected. Find out the why's and wherefore's of your dr's recommendations.

      over 5 years ago
    • RobbieFlores' Avatar

      Your doctor recommended the procedure as an option to what? I didn't have an option and had a colostomy. Permanent. So far so good. I eat healthy. Not too many restrictions..I know it's a huge huge decision. Because of my situation it was my only option. And I asked alot of questions. You know the difference between a colostomy and an ileostomy. Do your homework so when you talk to your doc he doesn't overwhelm you with medical terminology

      over 5 years ago
    • RickinFla's Avatar


      Not sure how this website works so I posted a response to your wall.


      over 5 years ago
    • Jayne's Avatar

      Hi, I did have an ileostomy. It was a shock at first, I won't lie. Seeing your intestine poking it's head out of your side just isn't right! But I did adjust and it became ok after a few weeks. I think the worst part of the whole thing was the odor when you needed to empty the bag. You will have an ostomy nurse show you how to manage it so be sure to ask her about that. Just keep in mind that your insides need to heal so this is actually going to help you in the long run. It's just an adjustment, and goodness knows everyone on this site knows about that! If you'd like more of the gorey details, let me know and we can exchange emails.

      over 5 years ago
    • LauraJo's Avatar

      Is it a temporary one or planned to be permanant?

      over 5 years ago
    • StegalMan's Avatar

      Thanks everyone for your input. I appreciate it, I don't know at this time if it's to be temporary or permanent. I think the doctors don't know yet. I'm still asking lots of questions

      over 5 years ago
    • LauraJo's Avatar

      I had a temporary ileo, and let me say first, that it WASN'T that bad, once you get over the initial shock. I had a few moments...but I swam all the time, went to the gym, the beach, pretty much my normal routine. I echo what Abrub says about getting a specialist. My surgeon specialized in colorectal cancer surgery, and he put me back together as good as new, with a j-pouch. Because my tumor was very very low in the rectum, he had major concerns that he would even be able to create the pouch, but he is skilled and I was lucky. And after about a year of settling in, the pouch is pretty much the same as the original plumbing, so I am VERY satisfied with the procedure. And he advised me, and it makes sense - some doctors will do your colectomy/ pouch creation WITHOUT doing the temporary ileo, and that can cause ALL kinds of infection/continence issues down the road. I mean, think about what is passing over those stiches? So he won't do a pouch without the temporary ileo. Just a couple of points to discuss with your doctor, and to maybe help relieve your mind a bit.

      over 5 years ago

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