Stump & Cancer - Seeking Advice on Bleeding and Potential Risks

This thread is for those of us with a partial stump and permanent ilio... with the idea that possibly later to be reconnected.. such is my case....

Also, I am calling all Ken and Barbie butts. Calling stumpees with rectal bleeding... which current meds aren't helping much and the diagnosis was colitis or proctitis. (IBD)

I am trying to separate fact from fiction to present an honest approach to my GI doctor.. with your help I think I can arm myself with questions to ask him.

I ran across some info from an ostomate replying to the current threat of mucus drainage from rectum. Most people will agree it is quite normal for discharge; however, bloody discharge is not normal and indicates something like infection or inflammation is going on. Someone also suggested the drainage could be from a fistula, separate from the rectum. Very good points. Didn't think about that.

What led me to freak out was an ostomate having bleeding from his stump with no means to put it in remission. Said his doc mentioned having a stump increased chances of cancer in it.. Having a stump just hanging there not connected and bleeding could or will lead to cancer. Whaaaaaat? And it's typical for stump removal later, quite common I believe he wrote the doctor said. Whaaaaat?

I was never told this.

So for Ken and Barbie butts, what was the decision to be sewn up? Was it because of cancer, or possibility of cancer? Or the unmanageable bleeding? How are you doing now? Do you think the colitis or Crohn's issues have left your body? If so, this means you have no other symptom of IBD. Correct? Pass or fail? And what about the dreaded side effect of stump removal? I have read E.D. is likely a result. Whaaaat?

For those like me, bleeding on meds, were you ever told your chances of cancer increase having a stump than not having one?

If there meds tried, what were you prescribed? I am currently on Uceris foam.. And believe me, it's a hit or miss game with blood discharging.. Sometimes clear, other time bright red.. Not so much in toilet but on toilet paper... I get flashbacks of flares when I had an intact colon and it was uncontrollable.. It feels almost like they never removed the colon!!

Fact from fiction. What have you heard? Been through??

(Not to fault surgeons, but removal was done as an emergency and leaving a stump in for later connect was the plan.. However, I think he should have biopsied the rectum.. To determine and cover his own ass in the event some was brewing in that hole. He did not. And thus, the stump becomes a conduit for more colitis. I wonder had they tested, if they should test... It would have been ideal to remove and sew up the butt hole then).

I'd like to be sure I won't leak. I won't have other symptoms.. I won't have side effects but if so, what are they? And whether or not it's worth going through all that agony to be rid of IBD? If in fact they will completely cure my IBD?? What say you? Thanks in advance. And here we gooooo.

Warrior on the warpath.

If you're having all those problems and no sign of ever stopping, I think it's best to have the stump and anus removed for your own health. I had my rectal stump removed 30 years ago for some unknown reason. The doctor left my anus in, luckily never had any bleeding or discharge from it, and no sign of cancer. No, I was never told at the time about the risk of cancer. I only learned in later years when I changed to a new doctor and saw the look of panic on his face when I said I still had my anus and had never had any scopes or scans of it!

Hi Warrior, my doctor told me before I had my surgery 34 years ago that even though I didn't have any cancer in my history, that if there's inflammation or infection, there's always a chance of cancer. The surgeon agreed with him, and he told me it was going to be a rough recovery, so I agreed to a full proctocolectomy surgery.

Thanks Ron. Wow, 34 years ago they knew this and not one word to me in 2016. Are you suffering from any signs of IBD since then? All cleared up? And what developed as a side effect from the rectum?

I heard it's a rough recovery when they remove a rectum. Just trying to prepare myself for it some time in the near future. Thanks. -Warrior

Thank you, Panther.  30 years ago, huh? Wow. Hm...  So they can just remove the rectum and not the anus? I was not aware of that.  I wonder what benefit, if any, leaving the anus in has.??  You said even with an anus, there is no leakage, which is amazing since it's basically an opening in your lower body that even gravity would pull anything inside you - out.  I am puzzled you have this.  I guess that doctor was too. Good info... No signs of IBD at all then? All cleared up? No meds? And I guess there's no need to sit on a toilet anymore?  Thanks again. -Warrior.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Warrior, I have had a permanent ileostomy for 20 years after going through a 3-year failed reversal... My rectum was removed and anus sewed up. I have never had any problem since... At first, it was a weird feeling like phantom pain, but it soon went away... I think you would be much better off without it... To be honest, I can't even imagine sitting on the toilet and pushing poop out... Lol... I do miss having a good fart once in a while though. Hahaha.

Ange

Hi Warrior, I was really sick when I had my initial surgery, so recovery took longer. But I went back to work after 8 weeks on a limited basis. I was originally diagnosed with colitis, but last year I had resection surgery and my stoma moved to the left side. The biopsy said I have Crohn's.

Hi warrior, I have had a permanent ileostomy just 3 months ago, after 10 years of ulcerative colitis which became drug resistant. I still have a rectal stump that still has UC happening, with bloody mucus. I am awaiting surgery date to get the stump and anus removed. The surgeon told me it's best to be removed as there is still a cancer risk.