Key Questions for Discussing Colostomy and Ileostomy Reversal

Hello forum readers.  I had a colostomy last August due to complications from colorectal cancer.  My tumor was at the junction of the colon & rectum, so some of each was removed.  It's a long sordid story, but end result is they could not reconnect me during the original surgery last year and I've had the ostomy since.  I was done with all my cancer treatment by this past May (chemo & radiation) and scans & bloodwork so far show no recurrence, so I am getting ready to speak with my original surgeon about reversal.  More recently I had a colonoscopy (my first - I was only 42 when diagnosed) so they know about how much rectum is left and apparently it's "enough."  They cannot say for sure that they can reconnect me, it all depends on scar tissue and what the "real" length is, but the surgeons I've spoken with and both my oncologists have all encouraged me to try if that's what I want.  If they can reconnect during the next surgery, then I would have an ileostomy to allow healing, and then 2-3 months later I could have the ileostomy reversed and hopefully be back to normal.  Or as close to normal as possible, anyway.

I'm wondering if anyone has a history similar to mine, and if so, what things were most important for you to ask about?  I'm mostly concerned about the function of my anatomy assuming they can reconnect, from a quality of life perspective.  Will I be running to the bathroom forever after, will I have dietary restrictions forever after, things like that.  I've come to terms with recovering from the surgery itself - which I'll have to do whether it is successful or not - as I've done that before and know what's involved.  And this time around I won't be extremely sick like I was last year. 

If anyone has had similar experience and would be comfortable sharing advice or questions/concerns you had before a reversal, I'd appreciate it.  Many thanks.

Hello Erinbeth.

It sounds as if you have lots of pertinent questions to ask and, even though I have not had any similar experiences, I just wanted to say I hope that you will get lots of helpful responses  from people who have.

I look forward to reading all the replies and I hope everything goes well, for you whatever you decide is the most appropriate course of action in your case.

Best wishes

Bill 

Hi Erinbeth! My cancer surgery actually came a few years before my ostomy, so I can tell you a little bit. After finishing surgery, radiation, and chemo, the cancer was definitely knocked out. I had a shortened colon (by about 13 inches or so), but it was reconnected during the initial surgery. After the treatment, I had problems with diarrhea all the time, probably from a combination of factors, including losing the length of colon so not as much water is reabsorbed from the waste, as well as long-term effects from the radiation (which I understand can happen, more than with the chemo). I was taking prescription and over-the-counter anti-diarrheals after that to make the output not so watery. I never really came off of them until after the ostomy surgery. Not a real big deal, just one of the things I got used to doing, since I was on so many other heavy-duty drugs as well, for the peripheral neuropathy in my feet and legs (side effect of the chemo). Just as a hint - if you do not now have neuropathy in your feet or hands, talk to a registered dietitian for help with your diet - there are actually things you can do there to help prevent it from occurring.

The radiation actually damaged one area of my colon so that it very slowly ate a hole through, allowing wastes to escape outside the colon and cause a roaring case of peritonitis. I didn't get the ostomy until 4 years after the original cancer. Suddenly, everything changed - for the better. Apparently, I had been having some problems with that for some time before it became acute, causing a lot of problems. After getting the ostomy and finally clearing up the infection, almost all my other pain also went away, as well as my output becoming more solid WITHOUT having to use the anti-diarrhea medication anymore! Why did that happen? I don't know, and it stumped my doctors as well.

What I can say, once you get reconnected, is that you may have some issues with somewhat watery output, but probably no worse than what you are experiencing now with the ostomy. If the rectal valve was damaged by the cancer or the subsequent surgeries, you may have some continence issues - definitely something to ask the surgeon. Eat well, it really can have physical effects on your body. And prepare your list of questions well ahead of time so you won't forget anything to ask the doctor.

And good luck! I know it will be at least another year before my doctor is going to entertain the possibility of reconnecting me.

Hi Erinbeth, I hope none of this scares you because I think my reversal went well but I wanted to give you some details in case it helps prepare you or help in any way. My situation was a temporary loop colostomy for 3 months last year after diverticulitis, peritonitis, sepsis, and anastomotic leak. so the reversal wasn't a choice-it was planned. I had it done in December and was reconnected. At first Return of bowel function was a little slow...3 or 4 days of bloating. Walking around the hospital ward was really helpful. There was about 8 weeks of 'butt burn' which is a painful feeling in the rectum with a sensation of having some burning residual waste in there.  Luckily it did go away in February and now it's just a memory. I developed a hernia at the ostomy site and needed surgical repair and after that there was another 8 week post op recovery period but no butt burn this time. Slowly I advanced my diet and added Metamucil 2 times a day. I sure do wish you all the best . Take care of yourself and Best of luck. Please feel free to ask me any questions.