Reversal not possible due to rectal inflammation - Advice needed!

As a result of findings after colonoscopy, I'm told

Due to the inflammation and age, not a good idea

Because tissue may not hold well, I could get a

Infection from a leak which could be very serious.

I wasn't crazy about surgery, it's been 4 years now

So I guess I waited too long. Anyone thinking

About reversal, don't wait too long! I had surgery because of diverticulitis, told I could reverse but not past

79. So I thought now I might be ready.

I hated the idea of surgery again. Hospital for 7 days

19" of sigmoid removed. I was not excited about a

Repeat.

Now too late.

What is my future? Colonoscopy every two years to catch cancer, I guess. Then what?

It's been a difficult year in and out of the hospital because of a

Stricture which was fixed during colonoscopy.

Thank God cause now at least things are returning to a new normal. I would love to hear from anyone.

Thank you for reading.

Hello Asiam.

Sorry to hear that you were unable to have the reversal as that must have been a bit of a disappointment for you. Hopefully you can look on the bright side and think that not all reversals go well. You could have ended up worse than you are now. I opted not to have a reversal because I did not believe the doctors when they said it would be 'no problem'. The reason I had a colostomay was still there, so my reasoning was that if they connected me back up again I would revert to how I was pre-stoma. Smething that I would not wish on anyone! 

As someone (else) who is getting on in years, I was interested in the age thing, as I have often wondered if the medical profession has an unwritten rule that 'oldies' should not be treated in the same way as younger people. 

Best wishes

Bill

Sorry to hear you cannot have the reversal. I guess it is rough to be told that after you thought it could be done. I was told at the beginning mine was permanent. Good luck and stay safe

Asiam,

First, let me say that I am sorry to hear that you no longer have a choice to have your ostomy reversed. However, as Bill pointed out, there can be difficulties with a reversal. There is a syndrome known as LARS (low anterior resection syndrome) that often accompanies a reversal. The signs of LARS generally have to do with bowel incontinence and can take years to resolve themselves. Which means that people who suffer from this have to wear a diaper until it resolves itself, if it does. So, while the news you got wasn't the news you wanted, it may actually give you the best function. I don't think I would trade a bag for a diaper. I'm not saying that you definitely would have suffered from LARS, but I do know 2 people who have, and they are the only people I know who have had a reversal. One, a woman in her 50s, was able, after 2 years, to return to a normal life; the other, a man in his late 60s, unfortunately I have lost touch with, but I know he suffered several months with LARS when I last heard about him. Asiam, sometimes the devil you know is preferable to the one you don't know. I hope you will take solace in knowing that your cancer has been treated and will continue to be monitored, and more than anything else, you are alive. Take good care of yourself.

Laurie

Hi, I am a returning member. I have had Crohn's disease for over 35 years and four years ago underwent ileostomy. The entire large bowel has been removed and for four years, I have been on the bag. The doctor had a plan to reconnect me, but after four years and constant discharge of mucus and blood, it seemed unlikely to get reconnected, simply because of IBD - Crohn's. If you're bleeding from the rectum (inflammation), you still have Crohn's disease. Now you didn't mention cancer or Crohn's in your summary. Proctitis? Colitis? Yeah, it doesn't matter to me. You got what IBD is all about - inflammation. Period.

We tried medications to keep bleeding less - Remicade, Humira, Stelara (these biologicals nearly killed me). Nothing worked except prednisone. If we could have controlled the discharge, my doctor would have considered reconnecting the small bowel to the rectum...

WHAT!? I would still need meds, and the leakage would probably be worse. Diapers? No thanks. I am approaching age 60, and the only resort now is to remove the rectum. No sense having it, right? Well, perhaps it's because that surgery would open a Pandora's box. I have suffered since April this year - 2020 - 4 hospital stays in 5 months. Here's some interesting diagnoses to ponder, all of which I now have...

Pyoderma gangrenosum, MRSA, Klebsiella bacteremia. If you're immunocompromised, be very concerned about surgery and the doctors' "know-how" experience.

I am consulting NYC doctors at the IBD clinic at Mt. Sinai next week. These guys would be experts in their fields. I am not open to reconnecting. I am seeking info on whether the rectum should stay or go, and if it goes, what could be next.

IBD does not leave you. It can travel. It can really mess you up. You are never cured from IBD. It's all I know. It doesn't sound like you're in good health right now. Keep the bag. I don't think you can have a colonoscopy. I am not sure, but a sig scope is what I get yearly.

It's a big decision to go for more surgery, but what would it yield? People here can offer some hope or some answers. Everyone is different.

My simple abscess in April caused me to get MRSA. Google it. Nasty blood infection. So I am looking at a new ball game here if I decide to get a proctectomy (rectum, anus removal - the stump also known as Ken Butt).

What I know I must do now is get off prednisone. Use a sparing agent. I am trying something called dapsone, and so far, I think it helps reduce the discharge. I am also on pred too, which I believe is reducing the bloody discharge. Tapering pred while on the dap seems to be working for now. I can live with this without rectum removal, but sooner or later, I may have no choice.

Age is not a factor. Health is. Pre-existing conditions and the medicine you have been on for years - all factors. If you are "worn" out physically, then consider the lesser of two evils - options. But consider being safe and managing what you already have.

I am in the same boat as you. Let's keep rowing straight. Good luck. Warrior.

Warrior, so sorry for all you have had to go through. It is good to hear from you. I have thought about you often. I hope you are getting better. Best wishes and stay safe.

Hi Lovely.. knew you'd be out here..  Thanks for the shout. I will be returning to the site..  gunna need some time..  It was pretty bad there for a while.  Hospitals suck. 

I am glad to hear from you. Hope you are well  and  taking care of yourself.  You can pass my regards to the others.  I am getting back on track.  Will have to update my profile soon.

Do take care..  hugs.   Warrior   

Thank you, 4 years ago why didn't the doctors tell me that
This could happen.. Diversion proctitis. nbsp; I was fine for two years then trouble started, fistulas etc. So I got entiveo infusion which cured the fistulas. nbsp; Now just have the inflammation which is not too bad yet..

My concern is like you ..the future. nbsp; I do not want to have nbsp

Rectum removed.

All could have been prevented with surgery reversal

Before bleeding and all set in because of not having

Stool go through. nbsp

Let's keep each other informed with anything that we learn.

Thanks for your message.

Oh, thank you. It has been one thing after another.

The last 7 months or so. After 3 1/2 years of not

having problems, so thinking good time to reverse.

Only to find now they can't. They had told me diversion proctitis might happen, causing no stool going through, now causing bleeding problems. I would have had the reversal

probably a year or so after the 2016 surgery.

Why don't they inform us of things that could happen?

Thank you for your nice message to me.

Take care. Asiam.

Asiam,

So sorry that you no longer have that option to reverse. There is a silver lining in there somewhere. You have become accustomed to your new normal and have adjusted well. The process of the reversal is very tough and no guarantee of success. You are saved from all that! Wish it had turned out more to your wishes!
You have had a tough few years so hopefully the future is smooth sailing!
Puppyluv

The doctors, I believe, have tunnel vision. Mine, for example, thought we could reconnect. Had he looked at the rectum while removing the large intestine, he could have biopsied it and possibly removed it at the same time. Guess what? When you have emergency surgery like that, they do one thing. In my case, remove it. And guess what? They missed the opportunity to save me from going back under the knife.

We need to be our own advocates, and forums like this are where you get your information.

FYI - There is a steroid cream that can help you. Ucerlis? I think it's called. It will control the inflammation in the rectum and whatever is left of the intestine. Ask your doctor. You should not be bleeding. That is bad news. This stuff comes in a can under pressure with an applicator so it can reach far up inside you. Since I only have a stump about 6 inches, the stuff goes in and passes right back out like hitting a dead-end wall. No kidding. So it failed me. And suppositories... yuck, no help.

Prednisone oral tablets fixed the discharging. Now it's just mucus. Maybe a teaspoon comes out now. Still nasty to deal with, but it has improved. And maybe the new drug Dapsone is my silver bullet here.

Hang in there. --Warrior

Hi Warrior,

I'm writing to let you know that I need to have surgery for

bowel removal... I'm ready.. sick of being sick.

Consult on August 4th at Mayo Clinic.

Big surgery... close hernia, close colostomy, make new

ileostomy on right side. Bowel removal. I'm 75 years old but

I'm taking good steps to be in the best health for this surgery.

I'm on two antibiotics + prednisone until surgery.

I hope things are improving for you.

Asiam.