Greetings all!
I used to have a rather active account on this website, but over the years I stopped coming as often because my real life got rather busy. In any event, it's awesome to be back and I look forward to reconnecting with some old and hopefully new friends here as well!
To make a long story short, my beautiful and very much loved husband, Tyler, has had his ileostomy since he was about 25 years old. He is now nearly 31 and is still doing great all things considered. However, just recently he started having sigmoidoscopes (he still has his rectal stump, but none of his large intestine) in order to screen for cancer as a precaution. The doctors have found that he does have inflammation in his rectal stump, and our specialist gave surgery to remove the stump as one of our options.
Tyler and I are both very worried though because we know that there's a chance he may be rendered impotent by the procedure. Naturally, if he were diagnosed with cancer, there would be no question at all! But for the time being, no cancerous polyps were found. Still, our specialist was honest enough to admit that there's always a chance cancer can be missed when they do biopsies of the rectal stump, which was a very frightening thing to consider.
So now, Tyler is left considering whether or not rectal stump removal might be worth it.
Can anyone who has had their rectum removed please let me know what the after-effects were like? I really need to hear from you brave people now!
Thank you.
Hi.. Just over four years ago, I had made the decision not to bother with a reversal, so my surgeon advised based on the fact that I was then 58 and had been bothered by colitis off and on since I was 22. That I should seriously consider removal of the rectum and anus. The logic was quite simple, really. I had a recent history of polyps, colitis was affecting the stump and making life unpleasant. But most importantly, there is a high convergence of blood vessels in that area. And as the surgeon put it, if cancer cells occur in that area, they can be rerouted through the bloodstream to other areas of the body long before a definite diagnosis is made. So a decision on rectum/anal removal depends on the time exposed to bowel disease, presence of any pre-cancerous cells, family history, etc. As far as erectile dysfunction, there was no change, all works well. There is scar tissue that makes things a bit uncomfortable, but that dissipates over time. I don't know if the surgery affects sperm count (too old to care at this stage in life LOL!!!). Maybe contact the Mayo Clinic or John Hopkins for some opinion on that.... The important thing is to get a well-seasoned specialist surgeon to lead the surgery. There are a lot of critical nerve threads in this area, so in my view, don't go with a general surgeon. One issue I did run into was that I developed a small sinus during the healing process, i.e. a small cavity just inside the anus which became uncomfortable and left me feeling like I had a swamp in my pants... There wasn't a specific leak, but it was damp and would get sore... I was assessed with an MRI and rectified by a plastic surgeon in an hour of outpatient surgery. All the best!
MeetAnOstoMate is a remarkable community of 41,407 members.
“I mostly read and still feel like I belong.”
“Doctors took notes; they want others to find this website.”
“From midnight blowouts to big wins, there’s always a hand to hold.”
Well, I hit the two year mark. I went back and read my posts from when I first found this site. I was very fortunate in that I stumbled upon it only 4 weeks post op. I have said many times that this community really saved me. The first 2 weeks after my surgery I shut down completely. It wasn't until about the 3rd week that my son came in to my room, flicked on the light and told me I was going to have to get back to living because I was scaring him. I had fallen into such a depression. He ticked me off, but it also made me stop and think- what was I going to do? Feel sorry for myself and sulk, or be grateful I was alive.
I've re-read my journals from that time and it was after my son kicked my butt, so to speak, I took an honest inventory and had to dig deeper than I've ever had to. I mean, I had survived a pretty nasty divorce, after a pretty crappy marriage and that was tough. But this was different. I felt like I was now a handicapped person who would be limited in their life and be looked at as a freak. My mental state was precarious, at best.
But then I found this site. I just lurked a bit before posting. I read so many of the other stories and I started to see just how full my life can be, I was not handicapped, and certainly not a freak! The stories of survival, the sense of humor, the support and compassion was inspiring. It was then I made myself get out of the dark, and get my sh*t together.
Not all rainbows and sunshine at first, hardly! But with grace from myself - to myself, and the kindness and willingness of the folks here to be supportive, non judgemental and openly share intimate details about their life circumstances, l not only survived but thrived.
I think of all the years I had suffered with such extreme pain, barely functioning, and the many hospital stays and how that is all behind me now. (All fingers, toes, and legs crossed that I never have to go near a hospital for myself ever again. I think I'd rather have a fork stuck in my eye. I loathe every about them.)
So, to everyone who has been a part of this journey with me, to say thank you is not enough. I'm forever grateful to know you all. My Angels, each one of you.
And as the Grateful Dead famously said,
"what a long strange trip it's been!"
Im so happy I'm tripping with you all.
Thank you very much for your response!
We have already agreed that if Tyler has his rectum removed, then he will definitely go to a colorectal surgeon and not a generalist.
Hope you continue feeling great.
Learn about convexity and 4 myths surrounding it.
I've had my rectum stump for 14 years. My GI Dr. tells me all the time that I should have it removed. My answer remains the same...NO! If your husband is not having any problems with the rectum stump, then why remove it? If it ain't broke, don't fix it! I understand we are at a higher risk for rectal cancer, but I've chosen to leave well enough alone. Take care.
I'm scheduled for rectum and anus removal next month. My colon was removed during my last surgery. I'm wondering how the recovery will be relative to the colectomy.
My Ostomy Journey: LeeAnne | Hollister
I have had an ileostomy since 1971 and until 1994 I had a total colectomy and a rectal stump. The stump was subject to cramping and minor bleeding but was tolerable because I used belladonna and opium suppositories. They were a great drug, but in 1994 there was a worldwide shortage of opium and they became unavailable. My surgeon at the Cleveland Clinic had been on me for years to have the rectal stump removed, and I did so at that time.
Today, I experience occasional phantom pain (i.e. pain where the rectum used to be) and a very light occasional discharge. The major issue is erectile dysfunction. At first, there was no problem but over the years, as nerves died, the feelings that lead to an erection faded and today there is virtually no ability to have an erection. Viagra really doesn't help, so I am basically impotent.
While this sounds terrible, I avoided some of the worst potential issues such as heavy, malodorous discharge and a wound that never heals. If you can avoid this surgery, I would do so. Good luck.
Hi, I'm new to this site. My husband has had a lot of problems with very bad leaking from his bottom. He has been told that it might help if he has his rectal stump and anus removed. Any information would be very helpful. Is it a long recovery and is it worth it? First operations went wrong, he was very ill and ended up with C. diff infection, so we are very worried about him having another operation.