Hello everyone, hope you are all doing well! I know I've posted about this subject in months past, but now I have the surgery to remove my rectal stump this Monday and am starting to get a little anxious for everything. I've had an ostomy since 2009 after a bad flare of my Crohn's. They left the rectal stump in with hopes of reconnecting one day, but unfortunately that's not possible and in the last year that piece has gotten really diseased and hasn't responded to any treatment. So I'm left having surgery on Monday for a completion of my proctectomy and make the stoma permanent. I was wondering if you guys could offer some insight into this surgery. How was the pain level? How many days were you in the hospital? How was the recovery process? I know my surgeon said he will have to do it laparotomy so I will have another large midline incision. Thank you!
Hi ccojei, I had my rectal stump removed in October last year. I found the pain not nearly as bad as I'd been informed. Pain meds and not overdoing it was the best way to control it. The Ken butt was very sore but got better with time. I was laying on alternate sides for about 4 weeks, moving every 4/5 hours. Awkward to eat and change/empty bag but you'll find a way. Stay strong, feel free to reach out at any time. Take it easy...Simon
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Thank you for your quick reply. I'll discuss irrigation with my doctor. I'm sure it would be down the road. My output is still very liquid. It's all so unpredictable at 6 weeks post-op. I have such a fear of constipation as I struggled with this forever. I used a fiber source to thicken the stool but it hasn't helped very much. I guess I will continue to be positive but it is a bit of a pain. This website is great and everyone is so informative. Cheryl
Hi CC, I just want to wish you good luck with the surgery and find the softest pillow for sitting upright. Don't use the donut type though, as they tend to spread the behind, which you don't want to do.
Learn all about skin barrier extenders.
My name is Paddy, I'm new to this ostomate forum but not new to my ostomy. I had the surgery in 2010. I'm facing the same thing. My gastro says the stump is too precarious to continue sniping polyps. I can almost hear the sigh of relief with each polyp he removes. I'm on blood thinners and the UC has gotten much, much worse. BTW, I had a stroke in 2007, the same year I lost my wife to lung cancer. I meant to explain why I spell phonically. The stroke took away my spelling skills along with many other things.
What my question is, is there a chance will I become impotent after the surgery? I am 72, but I have a normal sex drive and I don't want to lose that. Well, I guess that's it for now. Oh yeah, how do I make my font larger?
Because of the stroke, my mind wanders. Zender, I'm sure I'll have more questions.
Hi Paddy,
We're all different but my surgeon told me before the surgery that I would lose my ability to have sex and that's what happened. My cancer mass was at my anus and he said that I would have a permanent ostomy.
Be sure to ask your surgeon what will happen. Obviously the choice of living or losing your ability to have sex, living took precedence over the other. But I get frustrated and feel broken.
Yes, you will have to lay on your side for some time to help heal but when you start to sit up, the only cushion that helped me was an air waffle cushion. Ask about getting one, they gave me one but they sell them on Amazon but they're $100+/- you guys let us know how it goes and what works for others ...mtnman.
My Ostomy Journey: Keyla | Hollister
I have had a stoma now since I was 27 and now in my early 40s. They left a stump attached to my anus, which now seems to have the Crohn's in it, not the actual removed bowel.
For years now, my surgeon has been pushing me to have my anus removed. When I advised that I am gay and this is my sexual organ, he was very unimpressed and quite rude.
I then sought sexual psychological help in an attempt to try to become a top/active, despite always being a btm/passive in a gay male relationship.
This did not change, and furthermore, due to the depression and mental health issues plus nerve damage during surgery, I am not able to always get an erection even with medication, which makes the use of my anus as a sex organ even more important as it's the only form of sexual pleasure I would get.
I have read up that cancer survivors can have a procedure called Anterior Perineal Plane for ultra-low Anterior Resection, which removes the rectum and replaces it with some of their bowel and then reconnects, removing the stoma.
Personally, I'm not worried about reversal of the stoma, and I'd keep it, but the idea of having the rectum replaced with healthy bowel tissue, which would allow me to have sex, is a game changer for me. My only problem is that this is seen as normal for cancer patients but not for Crohn's patients. I have also read up on human and equality rights, as I am sure that as a gay man, I should not be assessed for this procedure as if I were a straight patient.
I just wish my UK doctors would see that not all men are the same and not all sexualities are the same. It also really worries me that as a single male with no working sexual organs, I'm basically no use to anyone and destined to be on my own.
I totally understand your concerns, and all I can say is make sure you get all the facts and look at all the options before making any decision.