Proctolectomy: Seeking Advice and Experiences

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485
warrior

At long last, I am faced with this difficult question of surgery in (2023) since having an ileo in 2016 and a stump left for reconnecting was the plan after complete large intestine removal on an emergency basis. I have had and still continue to have IBD and "fallout" from it after surgery. It located itself in the rectum. After four years, we controlled its bleeding with meds, gone for scoping yearly. Meds seem to be the ticket as per protocol. Prednisone is a factor my entire life, never being able to get off it. For 35 years, it has been the band-aid. Getting older doesn't help and still trying to taper pred, arthritis reared its ugly head, but that wasn't until after 2 years' development of MRSA, PG, cellulitis (read my profile with pictures). Yeah, got the schit kicked out of me, but now the stump calls.

This is major surgery. Having the ileo is less worry but now "what if" races through my mind. And it should. Some members here will recognize me and relate. Been a member for a while. Left for obvious reasons. Back now for help/advice.

I want to hear from men with their Ken butt story. I am especially wanting to know:

1) any post-complications? 2) recovery time? 3) other organs affected, if so, how was it fixed? 4) since this disease travels, I am concerned. It's in the stump now. Where would it go next? Don't say that is unlikely because you are not me in my complex medical condition. Just is it possible the disease goes elsewhere to nest?

If it had happened to you, explain where it went, how it got treated. 5) the type of surgery, Traditional, Laparoscopic, Robotic.

Wounded Warrior

AlexT

I can't help you with the IBD issues but the Ken Butt I can give you some experience. Mine was done laparoscopically, I have 5 small scars about an inch long each on my stomach. Of course, 1 big scar where your rectum would have been. I had issues with my wound healing because of radiation damage so mine took over a year to fully close. As far as fully healing, without issues like mine, I'd guess 6 months. You will not sit normal for a while and you'll need a cushion to sit on. I had my surgery in March of 2021 and I still can't sit on hard surfaces for very long. Otherwise, since you're already used to an ostomy, there's not much to it. Anything else, just ask.

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Bill

Hello warrior.

Sorry I can't help with knowledge or advice on this one, but I hope everything works out fine for you and I look forward to seeing the replies to this post.

Best wishes

Bill

gentlejohn

You have IBD, ulcerative colitis or Crohn's? First of all, prednisone needs to be tapered and stopped. This can be tough and difficult because of the adverse effects of withdrawal. Taper slowly. If you have been on prednisone for years, then tapering 1mg/month is an accepted rate. For me, tapering 0.5mg every 2 weeks was best for me. For example, if you are taking 3.5mg, I found it best to alternate days of 4mg and 3mg. That worked best for me. If you are using cortisone suppositories, 26 may be absorbed. A 25mg suppository will have 6.5mg absorbed, which is equivalent to 1.3mg of prednisone. Both of my parents died of the complications of prednisone, which they took for years for COPD.

The best recovery time from surgery is using laparoscopic or robotic techniques if possible, which I have experienced.

The procedure choice is dependent upon which IBD you have. If you have ulcerative colitis, then proctectomy will cure you and you could do a pouch anal procedure, but make sure you know what the postop course is. Personally, I have UC and chose proctectomy.

Crohn's is more complicated and depends upon what portions of the GI tract are involved.

Either way, chronically inflamed bowel has a risk of cancer that can be significant after many years.

Complications: Any procedure has risks. You can read about them—your surgeon is best to give you informed consent.

Recovery time: Depends upon whether you have a laparoscopic or open procedure. The laparoscopic would be expected to have a quicker recovery time.

Rectal Stump: There is a condition called disuse proctitis too. IBD is more likely. Sometimes it is hard to tell.

Other organs affected: Affected from IBD—it is rare and can happen related to the autoimmune cause(s) of IBD. Organs affected from surgery—ask your surgeon about urological problems.

FYI, my proctectomy is scheduled for Jan 10.

There are a lot of IBD specialists in New Jersey and New York. Good luck!

warrior
Reply to AlexT

Thanks, Alex. I had a feeling you'd be the first to reply. Why the radiation if you don't mind? That isn't usual post-op, is it? Thanks.

Excuse the pun, I am stumped. Alex was my first to respond to and the site said it was too soon to reply, so I private messaged (PM'd) him and a few of you as well. I only "liked" Alex's comment and tried to reply, so this equates to "too soon to reply". ?? WTF is that? I see this site has not ironed out its kinks... cause... now... partially what I PM'd Alex is listed here!! Hopefully this doesn't happen again with future people replying, but if it does, I am going to continue writing in this post to help others as well. I will PM only if need be. Let's see how this plays out. Thanks for understanding. Peace. Warrior. 12/9/22 11 pm EST.

 
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warrior
Reply to gentlejohn

After I PM'd John, I can't tell you how much this meant to hear from this guy. He "gets it," and upon reviewing his message here, the dr.'s diagnosed me with proctitis, which is defined as inflammation of the rectum. And "disuse proctitis" (as John nailed it) basically means being "hanging there" non-functional for 6 yrs. Did anyone tell me this would happen in 2016, after the grossly inflamed entire large intestine was removed? Of course not because the plan was to reconnect everything functionally to the stump and poop like a normal person.

In emergency cases such as mine in 2016, surgeons are programmed to remove the life or death problem.

Did you ever lose something, frantically looking for it when it was right in front of you all the time? Like car keys or that damn TV remote? Did the surgeon even look at the rectum? Probably not. Had he did, ....

-Warrior