UOAA Discussion Board

Hello,
I have had my ileostomy for almost two years. I didn't have it reversed because I had such issues with my bowels that I feared I would be trapped running to the bathroom without my bag. I know I am strange to want to keep my bag, but not only did it save my life, it enhanced it as well. I had stage 3 rectal cancer but after surgery they felt that it was all removed. My issue now is that I can't have a colonoscopy to prevent future cancers. My surgeon attempted a colonoscopy a few weeks ago but he can not see the right portion of my colon. He basically told me that because I am only 48 years old that it is extremely high risk that I would get another cancer in my colon. So now I have decisions to make. Has anyone else had this issue? If you have a permanent ileostomy what do you do to prevent future cancers? He is talking with me about removing my colon. Thoughts?

Hi Storm
I have a permanent ileostomy also. I also have a colostomy- one end of my colon protrudes in a stoma on my tummy, the other end continues naturally to the anus. Here's what happens with me. I have an ileoscopy. It's like a colonoscopy, but you do not take any prep. You simply don't eat for so many hours before the procedure. You lay down on your back, you go to sleep, the doctor takes off your pouch and sends the camera through your ileostomy stoma. Then, in my case, the doctor sends the camera through my colostomy stoma and examines the colon. Then you wake up, and there is no yucky recovery.

I know this doesn't answer your question specifically, but it is a start. I have a stricture at the end of my colon, so the doctor could not send the camera in through the anus.

I have never had cancer, so I'm sorry I can't help with anything there.

I too had stage III rectal cancer, butt I have a permanent colostomy today. Radiation destroyed most of my rectal muscles, THUS, I was tied to the toilet anytime I ate PRIOR to my surgery. Getting the bag gave me my life back.

I get scoped every 3 yrs. I get to lay on my back and they go through my stoma. Generally they find polyps in me. If it wasn't for those scopes, I would probably be dealing with a 2nd colon cancer today.

No you are not strange to want to keep the bag. I made my decision prior to my surgery with my husband's full support. My rectum is 100% gone. The expression is I have a Barbie butt back there, all sewn up.

Guess I don't understand why doctor could not do the scope. My understand I thought it was possible with an ileostomy. Hopefully other will chime in that have experience with ileostomy.

Good luck,

Nickolas

If your happy with the ileostomy and your Dr. feels your going to have cancer back in your colon ,there seems to not be a real choice and they can hook the ileo to the anus if they leave a stump then if you ever decided to go back you would have that option and my Dr. told me it would be mainly pudding poo.I just had a colonoscopy and as nickolas stated they went thru my stoma to look and sept 25th im going to get a reversal done, unlike you.. i am not happy with my stoma because it has been 18 months and unless i irrigate or take milk of mag. it never has out put, so i have never had a poo surprise because its never worked...i will only have a foot of colon to get hooked up and i sure hope that's enough so i do not crap in my pants,lol but no matter what i am not going to go back so it all "depends" how it works out.. best of luck with your decision...

P.S. I do not think your strange to keep your bag if they work proper its great but if lots of issues its a total pain.

sassie

I have an ileostomy and am still having a scope before my reversal surgery - actually it’s only a flex sig to check the anastomosis, but he’s still doing it rectally as normal.

Cheers,
Rob

Rock_Robster wrote: 2019-08-21 22:17:17 I have an ileostomy and am still having a scope before my reversal surgery - actually it’s only a flex sig to check the anastomosis, but he’s still doing it rectally as normal.

Cheers,
Rob

Hi Rob,

I go by the name of Lee on the other site, Nickolas is the name of one of my cats. He died last year at the age of 18. He had a major paw in raising my son.

Storm,

I'm not sure if you are familiar with Colon Talk. There are several members there who had reversals and had issues with the bathroom controlling their lives. They found success with daily enemas. If you post there asking for help, I know you will get a lot of good advice. Maybe something to consider as another possible option.

Good luck,

Nickolas