@rick....there is one young fellow who wrote about his surgery.  Hang in there maybe he'll show up yet. I believe his outcome was really successful!! If I remember his name, I'll pm him for you...unless he beats me to it!! lol! 

I just PM'd the person I was thinking of. Hopefully he'll check in sooner then later!

All the best.

Posted by: @rick

Has anyone had issues with any damage done on removal of stump?

I had some complications related to healing the wound, but that was mostly because the wound VAC I had was not working properly. 

Urinary and erectile complications can happen, so this would be something to speak with your surgeon about. Your age, weight, and your surgeon's skill will play a part in how things go. 

It's not a surgery that should be taken lightly, but if keeping your rectal stump means a lifetime of ongoing issues, then you may want to consider it. 

For me, because of the high risk that my rectal stump would be a constant source of problems due to Crohn's disease, it was a rather easy decision for me.

If you have an ostomy for something other than IBD, you might have quite a while to think about it. As with any surgery, I do highly suggest putting together a list of questions for your surgeon. 

@veganostomy

Thanks very much for the response what is a VAC?

Posted by: @rick

@veganostomy

Thanks very much for the response what is a VAC?

VAC as in vacuum! Literally a vacuum for wounds, A.K.A Negative pressure wound therapy. :-P 

I explain a bit more about what it is and my experience in this post: https://www.veganostomy.ca/perianal-disease-a-timeline-part-2/

If it worked as expected, my healing would have been very quick. 

If we're talking about "Ken butt," mine was part of my ileostomy. Mine is already almost completely healed at just under four weeks, with no blood and only a very slight discharge from sitting on it and ignoring the pain. No VAC, just a drain for less than two weeks.

Personally I'd be more concerned with robotic surgery, than with a surgeon using their hands. Urination was and is a little slow, but the little fellow is waking up just fine (output is normal), and from what I've read, it can take five or so weeks for things to get back to normal. But at 56 and riding a Harley, I am just not risk averse anymore.

Cheers!

Seven mths. since total proctectomy at Mayo.  Still had drainage/discomfort & saw a local surgeon.  He shaved a lot of hair around the wound, which relieved discomfort.  Still getting drainage.  MD thinks possible varicose vein or worse, fistula.  We will try a CT to ID the issue.  Mayo said healing could take a month or a yr, as everyone is different.

Posted by: @madrad

Mayo said healing could take a month or a yr, as everyone is different.

Welcome to the forums, Madrad. Yes, I've spoken with people who said their healing was complete in less than a month, and others who experienced full healing several years after their surgery. 

I'm sure there are many variables at play, but it is frustrating when the range of possible timelines can vary this much.  

@veganostomy  Frustration? YES!! 

Eric, I had no resources post op, other than my W/O RN.  Handouts, UOAA & local chapter were no help.  After 20 mths, I found your link on Hollister.  Just spent days watching your videos & DEJA VU!  Our bellies look the same(no hair around my stoma).  Most of my issues were addressed by you. 

Yes, I too hate the ostomy belt, as you said: too small & very uncomfortable.  As a day hiker, I been trying "fanny packs" -poor results.  Going to order a Stealth Belt.  I can now hike 3-4 hrs. Does wearing your pouch horizontally make it fill faster or leak? 

Thanks for the oiling trick. :-)

Posted by: @madrad

Does wearing your pouch horizontally make it fill faster or leak? 

Not in my experience, but it also depends on how liquid your output is. More liquid, more chance for problems. I'd use a gelling product in the pouch if having liquid output is a concern. 

I do have an FAQ about wearing the bag horizontally that you might find helpful: https://www.veganostomy.ca/horizontal-ostomy-bag/

Good luck! I can't wait for the warmer weather so I can get out hiking more.

I was given a handout from my surgeon saying I could take up to 8 Imodium anti diarrhea pills a day.  I usually take 1 or 2 a day and this slows things down and less liquid issues.

I had my rectum removed when I had my ileostomy also - about 14 months ago.  Most of my surgery was done robotically, but my surgeon did the rectum removal by hand (incision from belly button down to pubic bone).  He said that there was not enough room down in there to do it successfully without opening me up down there.  My recovery was smooth.  No drains, almost no pain down there.  Anal closure was healed within 6 weeks.  I had a slight discharge until then.  I have had no urinary or sexual disfunction since surgery.  All is well.  Best of luck with everything!

Rick, my recovery from rectum/anus removal was long and complicated. It took two and a half years for the incision to even close, and I still need a special cushion to sit on. I still have pain in the area, and I expect that I will for a very long time. After consulting many doctors about my open incision to no avail, I was finally referred for 6 weeks of hyperbaric oxygen therapy, which laid the foundation for my incision to close, but even then it took nearly 6 months more. I know that my situation was a direct result of radiation injury to the tissue surrounding my incision. I sincerely hope your situation is very different than mine, but as Eric has said, this is not surgery that should be entered into casually. Your doctors need to be completely upfront about ANY complications that could arise from it. Best of luck with your surgery.

Laurie

My surgeon highly suggests removal of stump as the tissue has a high likelihood of developing into cancer...I have been discharging a few ounces once everyday that is bloody and can be smelly.

this bleeding has been going on for almost a year, so I really don’t see what choice I have..😔

@rick. Rick, you’re right. You want to do everything you possibly can to prevent cancer from developing. If you haven’t had radiation already, I don’t see why your healing would be as complicated as mine was. Given your choices, it sounds like the surgery may be your best choice. Surgery is never fun, but I can tell you that cancer is worse. Consider yourself lucky in that you can likely avoid the cancer. Good luck.

Laurie

@rick  Correct!!  GI surgeon at Mayo told me that my UC/Crohn's gave me a strong likelihood of Cancer.  Removal prevents it.  Like what Angela Jolie & many have done.  I too was discharging the same bloody crap from my stump-24/7.  Dakins(bleach) enemas 2X's a week for keep it under control. After 18 mths, I had total proctectomy.  Labs showed very diseased tissue.