Ileostomy and Total Colectomy Success Rates and Outcomes

Hi again, everyone!

You have all been super helpful with my last post, so I'm hoping you will be able to help again.
I am having a permanent ileostomy with a total colectomy surgery and have gotten very cold feet. This surgery is irreversible, and I have been having anxiety lately about 'what if this doesn't work?' I know my life now also doesn't work, but at least I know the issues—not many surprises at this point. What happens if this doesn't work and I can't reverse it? What happens then?

Does anyone know what the success rates of these surgeries are? And what happens when it fails?
I am trying to be as well informed as I can so I make a good decision.

Also, I know this may sound funny, but I'm reading about a Barbie butt and Ken butt too often! Can anyone explain what that is? My surgeon said he's leaving my rectum in and closing it off. Is that a Barbie butt or some other butt?

Thank you all for your support.

Know it's hard; try to think positively about the whole thing. I've been on this site for a little more than a year and a half since I had an ileostomy. I didn't have much time to think about my surgery, maybe three to four weeks, but I had it done. With the exception of having something attached to my side, my life is going on as usual. Like everyone says, you've got plenty of help and advice on this site. I don't know what your life has been like before, but from everything I've read on this site, it's going to be better for you. You'll adapt to your new life, and you'll probably be much happier for it.

The nearer surgery gets, the more anxious you will become. It's not an easy time; everything will be running through your mind.

There are no guarantees with any surgery, but almost all go problem-free. All I can say is I've had my ileostomy since 1989 and it's never been a problem.

Even though you haven't had surgery yet, I really think you should get in touch with the stoma nurses' department at your hospital so you can talk through all your anxieties and fears with them.

I see you're in the UK. It might be worth looking up "Ileostomy & Internal Support Pouch Association." They have members that have had some basic counseling training; they can give one-to-one support.

It is just like the dolls. They have no hole.

Seems like a very helpful response, Ben - these decisions are so difficult to make…

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

It's natural to have anxiety before a major surgery. Are you confident in your surgeon? Is this a surgery he has performed many times? I have no stats on success rates for ileostomies, but it's a pretty standard surgery these days. No surgery is without risk, and no two people will have exactly the same outcome. Some things in life are beyond your control, and you just have to let go and have faith. You say it's not reversible, so I guess you have to ask yourself if your current condition, the status quo, is acceptable to you. Are you OK with living the rest of your life the way things are, or do you know they will get worse with time? You do have an advantage over some of us, like me, who had no choice in my surgery (emergency due to a perforated colon), so make the most of it. You have probably already done your homework and decided what the right decision is. Now you just have to get comfortable with that decision.

Terry

You won't need your rectum since this is permanent. I don't know why doctors want to leave that thing in because it can cause issues. Since it's an end ileostomy and irreversible, tell him to take that thing out! I had an end ileostomy, total proctocolectomy. No more rectum and sewn up Barbie butt. I'm good.

Hi Abee, I don't know what your medical history is, but for me, I had colitis/Crohn's, and if I hadn't had surgery 30 some years ago, I wouldn't be here. I've had problems with my ileum due to Crohn's causing scarring and my stoma to retract, but I had resection surgery 6 years ago and haven't had any problems since. I have lived a pretty normal life, raising 2 daughters, working 40 hours a week, traveling, etc.

G-Day Abee, get him to remove your rectum as well or you could have problems. I have had all my butt removed and closed up "Ken Butt." "Barbie Butt" is the same, just like the Barbie doll, no asshole. Talk to the stoma nurse and you will feel better. After the operation, you will get to love your stoma because you will be feeling healthy again and living life to the full, like all of us. Good luck, IGGIE.

If you're having cold feet, then postpone the surgery. It sounds like you still have a lot of unanswered questions that you need to ask your surgeon.

A lot of people find it helpful to write down the questions that they have for their surgeon as it is very easy to get sidetracked and forget to ask them on the day. Carry that piece of paper with you everywhere and anytime you have a concern or question, write it down and bring it with you to your consult with your surgeon.

Also, look up the IAsupport group; they are UK based and have an excellent and informative website, plus you can get to talk to someone one-on-one if you like.