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Told no reversal now because of inflammation in rectum!

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Fri Oct 09, 2020 1:31 pm

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 its been 4 yrs now

So I guess I waited too long.  Anyone thinking

About reversal don't wait to 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 to late.

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

Its been a difficult year in and out of hospital  because of a

Stricture which was fixed during colonoscopy. 

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

Thank you, for reading. 



Last edited by Asiam on Sat Oct 10, 2020 11:28 am; edited 1 time in total
Fri Oct 09, 2020 2:20 pm

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

Fri Oct 09, 2020 2:23 pm

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
 

Fri Oct 09, 2020 3:19 pm

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

Fri Oct 09, 2020 9:04 pm

Hi, I am a returning member. I have had crohns disease over 35 yrs.  and four years ago underwent ileostomy. The entire large bowel has been removed and for four yrs been on the bag.  The Dr had a plan to reconnect me.. but after fours years, and constant discharge of mucus and blood, it seemed  unlikely to get reconnected.. simply because of IBD- Crohns.  if you're bleeding from the rectum  "inflammation"..  u still got chrons diesease .  Now u didnt mention cancer or chrons in your summary.  proctitis? colits?   yea.. don't matter to me.. U got what IBD is all about  INFLAMMATION.  Period. 

We tried medications to keep bleeding less.. Remicade, Humira, stelerea, ( these biologicals nearly killed me)  nothing worked except prednisone. IF we could of controlled the discharge my doc would have consider reconnection the small bowel to the rectum...

WHAT!  ?  I still would 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 rectum.  no sense having it right? well.. perhaps it because that surgery would open a pandoras box.  I have suffered since April this year 2020  4 hospsital stays in 5 months.  here's some interesting  diagnosis to ponder all which I now have....

pyoderma gangrenosum,   MRSA,  klebsiella bactermia.  IF you're immuno-compromised, be very concenred about  surgey and the doc's "know-how" expereince.  

I am consulting  NYC drs at the IBD clinic at Mt. Siani. next week... These guys would be experts in their fields.  I am not open to reconnecting. I am seeking info on  should the rectum stay or go? and if it goes, what's 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 colonscopy... 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 abcess 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 sparring agent. I am trying something call dapsone. and so far, I think it helps reduce the discharge. Am also on pred too which I believe it's 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-exsisting conditions, and your medicine you have been on for years.. all factors.   If  you are "worn" out, physicially, then consider the lesser of two evils- options.. but consider being safe.. and managing what you have already..

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

Fri Oct 09, 2020 9:20 pm

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.

Fri Oct 09, 2020 9:35 pm
lovely wrote:

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 awhile.  Hospitals suck. 

I am glad to hear from you. hope u 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  

Fri Oct 09, 2020 9:57 pm
warrior wrote:

Hi, I am a returning member. I have had crohns disease over 35 yrs.  and four years ago underwent ileostomy. The entire large bowel has been removed and for four yrs been on the bag.  The Dr had a plan to reconnect me.. but after fours years, and constant discharge of mucus and blood, it seemed  unlikely to get reconnected.. simply because of IBD- Crohns.  if you're bleeding from the rectum  "inflammation"..  u still got chrons diesease .  Now u didnt mention cancer or chrons in your summary.  proctitis? colits?   yea.. don't matter to me.. U got what IBD is all about  INFLAMMATION.  Period. 

We tried medications to keep bleeding less.. Remicade, Humira, stelerea, ( these biologicals nearly killed me)  nothing worked except prednisone. IF we could of controlled the discharge my doc would have consider reconnection the small bowel to the rectum...

WHAT!  ?  I still would 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 rectum.  no sense having it right? well.. perhaps it because that surgery would open a pandoras box.  I have suffered since April this year 2020  4 hospsital stays in 5 months.  here's some interesting  diagnosis to ponder all which I now have....

pyoderma gangrenosum,   MRSA,  klebsiella bactermia.  IF you're immuno-compromised, be very concenred about  surgey and the doc's "know-how" expereince.  

I am consulting  NYC drs at the IBD clinic at Mt. Siani. next week... These guys would be experts in their fields.  I am not open to reconnecting. I am seeking info on  should the rectum stay or go? and if it goes, what's 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 colonscopy... 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 abcess 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 sparring agent. I am trying something call dapsone. and so far, I think it helps reduce the discharge. Am also on pred too which I believe it's 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-exsisting conditions, and your medicine you have been on for years.. all factors.   If  you are "worn" out, physicially, then consider the lesser of two evils- options.. but consider being safe.. and managing what you have already..

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

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

My concern is like u ..the future.  I do not want to have 

Rectom removed.

All could have been prevented with surgery reversal

Before bleeding and all set in because of not having

Stool go through. 

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

Thanks for your message.

Fri Oct 09, 2020 10:07 pm
lovely wrote:

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.


Oh thank you.  It has been one thing after another 

The last 7 months or so.  After 3 1/2 yrs. Of not

Having problems so thinking good time to reverse.

Only to find now they can't.  Had they told me diversion proctitis might happen cause 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 

Sat Oct 10, 2020 11:08 am

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

Sat Oct 10, 2020 8:16 pm
Asiam wrote:

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

My concern is like u ..the future.  I do not want to have 

Rectom removed.

All could have been prevented with surgery reversal

Before bleeding and all set in because of not having

Stool go through. 

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

Thanks for your message.

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 biopsied it and possibly removed it at same time.. guess what? when u have emergency  surgery like that, they do one thing.  in my case, remove it. and guess what?  missed the opportunity to save me from going back under the knife.

we need to be our own advocates. and forums like this is where u get your information. 

FYI-  there is a steroid cream   that can help you . ucerlis? i think its called.    will control the inflammation in the rectum and  what ever is left of the intestine.   ask your doctor. u shud 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 and dead end wall.  no kidding.  so it failed me.  and suppositories.. yuck. no help.. 

prednisone oral tablets   fixed the discharging.. now its just mucus.. maybe a tea spoon 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

 

 

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