Surgical Error: Considering Rectal Stump Removal After 2.5 Years

Next week I have an appointment with my doctor. I want to talk about removing my rectal stump. I wonder if someone has advice about good questions I could ask or things I should keep in mind when deciding about the surgery.

The surgery would 'only' be for the rectal stump and a bit of leftover surrounding tissue. Since I started irrigating my rectal stump, it doesn't cause any physical problems anymore; it's just a bit annoying. The main reason I want to think about the surgery is a bit more complicated.

Almost three years ago, I was diagnosed with rectal cancer. I initially underwent endoscopic tumor removal (EID), but due to pathological risk factors (LVI, small resection margin), I needed additional surgery to resect the rectum. I was scheduled for an APR. When I woke up, the surgeon told me he had left a rectal stump in place because there was more space than expected. This didn't feel right. As I now know (after I eventually went to another hospital), it was a mistake: the endoscopic scar is still in the rectal stump, so the tumor bed wasn't removed. (Of course, most of the tissue around the rectum was removed, including one positive lymph node. And the tumor itself was already out.)

My new hospital recommended intensifying the follow-up with more MRI scans, but they advised against removing the rectal stump because most (local) recurrences occur in the first few years. I'm already in my third year, and of course, the risk decreases over time. The doctor said that the risk reduction from removing the rectal stump is small and does not outweigh the risks of major surgery.

I'm not convinced about this. I spoke to another doctor (not my current doctor), and he told me that the surgery might not be too bad because I already had the colostomy surgery. He said the part of APR surgery that carries the most risks for nerve damage, especially for women, was mostly done three years ago, so I shouldn't be too worried about that risk now. Then I started to Google things and found and joined MaO. I've read varying outcomes of this kind of surgery on the forum: mostly difficult healing and pain when sitting. Not only after the surgery, but I read it can last for a very long time. Currently, I am fit; I have no pains or any other side effects from the first surgery (except, of course, a colostoma). On one hand, I want to keep it that way. And no recurrence at 2.5 years after the surgery is reassuring. On the other hand, it doesn't feel safe to just leave it like this. So I find it difficult. I appreciate any thoughts about pros and cons and things to consider.

Everything I have heard about that surgery scares me. The wound can have trouble healing and is highly susceptible to infection, leading to an extended recovery.

I had rectal cancer too. And I fear recurrence... I'm 15 months out from my surgery, and already my surgeon is seeing changes in the rectal stump that he doesn't like. So that weighs very heavily on my mind. (Congrats on 2.5 years!)

When I say I understand your concern... I want you to know why I think I do.

Personally, I'd be inclined to listen to your new hospital. Intensify surveillance and avoid the surgery. My main concern would not be nerve damage but an extended healing that impacts my independence and function. Although... full disclosure... I am currently unable to lie on my side for more than 15 minutes due to some back damage. So that's certainly influencing my thought process.

Good luck with whatever you decide. Be sure to get a full explanation of risks and a realistic understanding of what recovery would be like.

Welcome, Kim.

This is a very specific question, and it's difficult to give a good answer. All I can do is share my experience.

I also live in the Netherlands. Following UC, my colon was removed, and an ileostomy was created.

They left the rectum in place. The idea was that I would then still have the option of a pouch. Long story short, I developed symptoms and decided to have my rectum removed.

The sphincter remained. The surgery went well and smoothly. The recovery time was very reasonable.

It was an 'open' surgery, with a large scar, so I now have two scars next to each other. :(

That's not the same as a Barbie butt like they do in some other countries.

The nursing staff did provide me with a special seat cushion, which I used for two weeks at most. I had the operation in UMC Utrecht.

From your story, it's not clear to me whether your doctor wants to leave the sphincter in place.

Oh! I assumed she meant Barbie butt surgery! I didn't know they left the sphincter in some places. If that's the case, I'd think the surgery would be easier than I envision.

Reading Yrsa's "From your story, it's not clear to me whether your doctor wants to leave the sphincter in place." I realized that's not even clear to me. So that's a question I will ask the doctor.

And I read Susan's "Be sure to get a full explanation of risks and a realistic understanding of what recovery would be like." Yes! That's exactly what I am trying to do.

Thank you both for sharing!

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Hi,

I had a rectal tumor which also moved downwards and created anal tumors. I originally thought they were hemorrhoids and couldn't understand why none of the creams I tried did anything. The anal tumors disappeared with chemo and I thought they were killed off but the surgeon said they just pulled back into the rectum. My surgeon removed everything from the stoma doing down and then closed everything up. He said that while I was open he was very thorough about removing anything else that appeared cancerous.

The "Ken Butt" incision started healing while I was still in recovery but I was still very concerned about putting stress down there and creating an issue or having it open. The surgeon was very pleased with how healed everything was during the post-op.

I'm able to sit without any issues but my new normal is feeling some pressure while standing or before needing to urinate in the rectal cavity. Based on my scans, it appears that my small bowel moved into that area to a degree. I also gained weight back since the surgery and I was thinking it could be partly that, too. There is some numbness at the perineum but I'm only aware of it when bathing that area.

Nothing became infected and I didn't have any problems while healing.