When to have stump removed?

[JFalken]

Hi! New here and looking for some help.

I'm a 40 yr old male with wife and young son in the UK.

I had an urgent ileostomy two years ago (due to UC) and left with a stump to give me options. I was told that I would need to wait a year before a second operation and so I had a year to make a decision about going for a j-pouch or just having the stump removed. After a while managing the stoma without problems and reading a little about the complications some people have with the pouch I decided to just have the stump removed. This is now scheduled for a few weeks from mow.

From the way the doctors explained things I was under the impression that it was just normal/required to have one operation then the second a year or so later but it seems that as long as I factor in the increased risk of cancer then it doesn't necessarily need done now.

I understand there is a risk of nerve damage with pelvic surgery resulting in the possibility of sexual dysfunction and bladder control. Still being (relativity) young these do concern me. When asking the consultant for the odds of these happening he explained that there really are not any numbers out there and studies report anything from 1-10 to 1-1000. Having spent some time on google I find this to be accurate. Some say there is almost no risk and others say there is an 80% chance of nerve damage?!?!?

Sexual dysfunction is one thing but to end up permanently catheterised as well as having a stoma would surely have a big impact on my life. I'm wondering if it might be a better idea to wait 5+ years. With a older family it might be less of a concern. By then the kid will be pretty much a teenager and not want to spend much time hanging out with his dad anyway.

So I'm looking for the experience and advice of everyone who has a stump or has had one removed.

1. How long did/have you had a stump?
2. When did you have it removed or plan on having it removed?
3. Was this based on any advice from doctors?
4. I removed did you have any nerve damage?
5. Was there any other problems?

Thanks in advance for any help.

 

[glum chump]

I had my ileostomy in 2012, and had my rectum and anal removal on May 31 of this year. When I had my ileostomy surgery, the surgeon had recommended that I have the stump removed within 5 years to lower the risk of cancer. So I needed to have the surgery by 2017, and I chose to do it this year because it was more convenient for my schedule.

Overall, the surgery was successful. I had a total hysterectomy done at the same time, and I was out of the hospital within a week. Unfortunately, the stitches on the back end came apart, and I've been on a wound vac for about a month, and will be on it for another month. But in terms of the everyday, I was back to doing things within a few weeks---just not sitting down much!

I have not had any nerve damage or any other issues. The stitches along my abdomen healed pretty quickly. After the catheter came out (Day 2 after the surgery), I was having no problems with my bladder. I also have MS, so I was pretty concerned about nerve damage and bladder dysfunction, but it turns out I worried for no reason!

I wish you well, and I hope your surgery goes great!

All the best,
Kismet