Advice on Removal of Rectum and Colon?

Hi everyone, just wondering if I could get some help and advice from others who have been through what I'm planning to do.

I had an ileostomy formed in July 2016 as an emergency as my colon had a mass in which then burst inside me as I could not go to the toilet and after a week started being sick with a lot of blood. I did suffer for maybe 6-7 years on and off with pain and blood from my rectum but the doctors said I don't have Crohn's or UC and that I was young, fit, and healthy lol.

Anyways, after it burst and had my ileostomy formed, I still discharge mucus and blood from my rectum daily. I have 15cms of colon left and they say the blood is due to diversion proctitis as the colon has nothing to feed on.

I really am unsure if I want to take the risk of surgery having the rest removed or just leave it be. I'm 29 years old and plan to keep my ileostomy forever but would like to keep my rectum even if it has no purpose. If the bleeding is due to diversion proctitis, is there a possibility my colon could develop cancer?

I've been told that the rectal stump being left intact, and not connected, is a cancer risk. In my situation, having had UC, my surgeon is strongly recommending that I have mine removed or a reversal to a J-pouch. I'd get opinions from your surgeon, and maybe some other doctors as well, and go from there. Have you ever been offered a reversal surgery? If you don't have Crohn's Disease, that could still be a possibility.

I am in the exact situation as you are....I am having bleeding and cramping every day...now the pain has become intolerable...

I need it removed but I am older and have many other issues...heart and high blood pressure diabetes...etc so high risk....

So I am freaking out thinking will this thing ever heal.....FATTY ACID ENEMAS are supposed to help....also CORTISONE suppositories....both of

which my insurance will not pay for......but I am doing the best I can...... I am in horrible pain.....

Who is your doctor... I live on the Indiana line... and think it is time for a new doctor... I am suffering so badly with this pain and bleeding...

I live in northeast Indianapolis. I see a doctor at the Colon and Rectal Care office on the north side of Indy. If you're willing to travel here, that office has been good to me. Look them up online. I'd recommend them.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Hey Gary - just to clarify, you have an ostomy, and they left your rectum and colon or chunk thereof, intact but sawn off.

I'm 35, had mine since I was 15. They left the rectum intact for a potential reconnect down the road. Long and short of it, I had zero faith in the reconnect, so 3 months ago I had my rectum removed. My reasons were because there was still disease in there, and thus I still had blood and mucus discharge once a day. Minor inconvenience, but over time those muscles have weakened, and I would get minor leaks once in a while.

Also, there was the ever-debated cancer threat.

I waited until now to get rid of it as I wanted to have my kids first, as I understand there was a small chance of hitting certain reproductive nerves that would render impotence, so I didn't want to chance not being able to have kids, so I got that done.

So those were my reasons really, might have different motives than yourself, but now, 3 months post-op, I'm glad I did, if for no other reason than I don't have to worry about my butt leaking! It's a rocky road getting here but almost back to 100. Feel free to message me with any questions.

Kevin

I had my entire colon removed and was left with an ileostomy due to having ulcerative colitis and not responding to immunosuppressants, etc. The symptoms had made life pretty bleak and my permanent address was my toilet. My disease was so active that colon removal also eliminated the 'possible' cancer risk in the future.

You say you haven't been diagnosed with Crohn's or UC, so my two cents may not be entirely relevant to you.

My surgeon says I can go off and live with my ileostomy without any further surgery if I want. It might even be less risky to put off further surgery during the child-bearing years. He is giving me time to think about what I want.

However, I do have bleeding/mucus discharge (a healthy sign that the body still remembers what it is meant to do, apparently) still, and the rectum is just in there not doing much except possibly developing even more UC, so I think it makes sense for me to remove it. The ultimate goal is for an entire 'reversal' or 'take-down'.

The bit of colon you have remaining may remain healthy, so your case is different. I'd say trust your gut instinct, but that probably hasn't helped many of us here!