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PROCTOCOLECTOMY OR NOT?

Posted by Rayofsunshine, on Sun Sep 15, 2019 10:43 am

Hi,  I have had a stoma pouch now for 2 years and since then I have problems with lots of discharge from the rectum.  Doctors have tried various things to help and now think the only way to stop this is to perform a Proctocolectomy.  (Removal of colon and rectum.)  I have no muscle control therefore its embarrassing when I am out and cannot get to the toilet in time.  I am usually a very positive person and with all the operations I have had I just get on with life.  But this is now ruling my life.  My question is has anyone had this problem or has had a Proctocolectomy?

Reply by Songbird16, on Sun Sep 15, 2019 12:29 pm

Yes. I had my surgury many years ago because of crohn's and fistulas and now have the freedom to go and do wherever I want.  Freedom!  You just have to get past the surgury part of it but worth it to me.  I hope it works out well for you too.  

Take care and God bless you.

Reply by Tickpol , on Sun Sep 15, 2019 1:01 pm

I had mine back in April.

For years I always kept track of where the bathroom was and was always doing the "can I make it" calculation.

I had a lot of rectal pain as well and my control was questionable thanks to all the scarring at the sphincter.

I cannot tell you how freeing it is.  Songbird16 nailed it.  You have to be mindful of how you sit and what you're sitting on until it heals completely but once it has.... it's just wonderful.

With all the modern pain management tools I really thought it was going to be worse.  I had a lot of scar material down there and the original plan was to do an ALT Flap procedure.  Thankfully my surgeon had enough good material to work with.

 

Every now and then I get the Phantom Rectum thing but in my case it's like an early warning of movement into the pouch.

 

Best of luck,

 

Dave

Reply by Rayofsunshine, on Sun Sep 15, 2019 2:37 pm
Songbird16 wrote:

Yes. I had my surgury many years ago because of crohn's and fistulas and now have the freedom to go and do wherever I want.  Freedom!  You just have to get past the surgury part of it but worth it to me.  I hope it works out well for you too.  

Take care and God bless you.


Thank you so much for your. Reply.

Reply by Rayofsunshine, on Sun Sep 15, 2019 2:41 pm
Songbird16 wrote:

Yes. I had my surgury many years ago because of crohn's and fistulas and now have the freedom to go and do wherever I want.  Freedom!  You just have to get past the surgury part of it but worth it to me.  I hope it works out well for you too.  

Take care and God bless you.


Thank you so much for your reply.

Reply by warrior, on Sun Sep 15, 2019 11:50 pm

ucerlis...is a steroid form. Taken like an enema. I am 2 yrs with stoma like you. Suffered a mix of mucus and blood. I have am ilio with no colon. I do have rectum and discharges unpredictable. Well this medication helped alot.. Turns out chrons is still in rectum and this foam is very helpful reducing inflammation. I rarely bleed and mucus does occur but talk mishaps where u get in or out of car?? Yikes.. The drug has offered a remission . Dunno about rectum removal.. Maybe one day in future.. Who knows.. But not now. Ask drs abt the medicine.. Ucerlis. Good luck.

Reply by Bill, on Mon Sep 16, 2019 1:37 am

Thank you Rayofsunshine for this post as it is something that I haver been contemplating for many years.

It has  'amused' me to think that my stoma was supposed to cure my incontinence and here I am, years later,  with the problem of incontinence with excessive anal mucus which I still cannot control. 

When I discussed this with the surgeon he said that  a proctocolectomy was, in his opinion a MAJOR SURGERY and, for that reason, he would not recommend it unless it became a necessity. 

Herein lies my dilemma: I manage the mucus with incontinence pads (which are cost free on the NHS). I would describe this as a nuicance rather than critical, apart from some occasions when the build-up of mucus causes me pain and I, once again, begin to ponder the question that you pose in your post.

I have appreciated the replies you have recieved so far and hope you get many more as this helps me with my own deliberations. 

Best wishes

Bill

Reply by Tickpol , on Mon Sep 16, 2019 10:26 am

Bill's surgeon is right too.  This isn't a beginner's surgery.  I'm sorry if I made light of it but I'm still revelling in the freedom of no more leakage, no more pain.  While I'm still wrestling with absorption issues and having to frequently empty my pouch in the grand scheme of things I am better off.

 

I'm hoping you get an opposing view soon so that you can better weigh if doing it is right for you.

 

Dave

Reply by Rayofsunshine, on Mon Sep 16, 2019 4:05 pm
warrior wrote:

ucerlis...is a steroid form. Taken like an enema. I am 2 yrs with stoma like you. Suffered a mix of mucus and blood. I have am ilio with no colon. I do have rectum and discharges unpredictable. Well this medication helped alot.. Turns out chrons is still in rectum and this foam is very helpful reducing inflammation. I rarely bleed and mucus does occur but talk mishaps where u get in or out of car?? Yikes.. The drug has offered a remission . Dunno about rectum removal.. Maybe one day in future.. Who knows.. But not now. Ask drs abt the medicine.. Ucerlis. Good luck.


Thank you for your reply

Reply by Rayofsunshine, on Mon Sep 16, 2019 4:12 pm
Bill wrote:

Thank you Rayofsunshine for this post as it is something that I haver been contemplating for many years.

It has  'amused' me to think that my stoma was supposed to cure my incontinence and here I am, years later,  with the problem of incontinence with excessive anal mucus which I still cannot control. 

When I discussed this with the surgeon he said that  a proctocolectomy was, in his opinion a MAJOR SURGERY and, for that reason, he would not recommend it unless it became a necessity. 

Herein lies my dilemma: I manage the mucus with incontinence pads (which are cost free on the NHS). I would describe this as a nuicance rather than critical, apart from some occasions when the build-up of mucus causes me pain and I, once again, begin to ponder the question that you pose in your post.

I have appreciated the replies you have recieved so far and hope you get many more as this helps me with my own deliberations. 

Best wishes

Bill

Thanks for your reply. I have to use enimas twice a week and stay in those days. This helps get rid of the blood and mucus. I thought I was finished with enimas after using them for 30 years but I suppose it could be alot worse which I am grateful for.

Reply by TB Cat, on Tue Sep 17, 2019 4:11 pm

I had a proctocolectomy 10 years ago after multiple colen resections due to having Lynch Syndrome. I would recommend it if you are to be an ostomate for life. In my case, leaving them in would have been another place for Cancer to occur. Good luck.

Reply by Rayofsunshine, on Tue Sep 17, 2019 4:46 pm

Thank you for your reply

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