The research suggests a better outcome is more likely without mucosectomy. The cancer risk in the rectal cuff is low, and it's easy to keep an eye on.

But what if cancer is found in the cuff?  Would he lose the pouch? (worried because of the family history)

Cancer can take a lot more away from you than your J-pouch, so I wouldn't focus on the risk of losing the pouch. In any case, regular surveillance would most likely find dysplasia well before cancer developed. The consequences would depend on the size and exact location. In some cases they might be able to do a pouch advancement and preserve the pouch.

The trade-offs are *hard*, no decision is guaranteed to work out well, and thinking only about how awful cancer is doesn't improve the decision-making. Remember that the surgeon is trying to get the best outcome for your son, which includes reducing the risk of incontinence.

I'd still love to hear other's experiences who had  mucosectomy vs those who did not.  Thanks!

Perhaps you ought to get a second opinion.  My surgeon removed the lining of the rectum (is that a mucosectomy?) to take away the risk of rectal cancer.  As far as I can tell, my experience with the j-pouch has not been worse (and sometimes better) than people here have reported.  

Yes, you are correct that is a mucosectomy.  My husband had it done too, and he has no problems whatsoever.  The way I see it, it eliminates the chance for cuffitis and cancer.  And seeing that colon cancer runs in the family I think it a good idea.  I'd hate to have him go through this surgery only to suffer with cuffitis or wind up with cancer.  Why not eliminate that risk up front?  Anyone else have experiences to share?

I did not have a mucousectomy with my first jpouch in 2008 but I just had my jpouch removed and redone due to 2 leaks in it, most likely from day one of my first surgery when I had leaks and all sorts of infections and abcesses that almost killed me. I had my jpouch redone and Cleveland Clinic by the great Dr Remzi almost 8 weeks ago. I had the handsewn mucousectomy this time around. They typically always do them on redone pouches. I have had a lot more mucous leaking from the backside this time. Sometimes I can feel it and can hold it but sometimes the pad between my cheeks is wet and I wasn't aware till I checked it. I know mucous from an unconnected jpouch is normal and healthy, I just hope when I get reconnected in March that things thicken up and don't have the uncontrolled leakage. I know mucous is a lot harder to hold in due to being thin and slippery. Fingers are crossed I don't have incontinenance issues. If I do, what was the point of the surgery, yes I don't have a bag on my stomach but I would be wearing a diaper...

Hi there,

I had the procedure completed due to the finding of cancer during step 2. After the process, all testing found me to be cancer free.

I have had no ill effects with the procedure. I can hold as long as needed and have no leakage.

Hope this helps.

Best to you.

Derek

dtmack posted:

Hi there,

 

I had the procedure completed due to the finding of cancer during step 2. After the process, all testing found me to be cancer free.

I have had no ill effects with the procedure. I can hold as long as needed and have no leakage.

Hope this helps.

 

Best to you.

Derek

dtmack, prior to being reconnected, did you have any uncontrolled mucous leakage? I had a handsewn mucousectomy for my redone pouch about 8 weeks ago and sometimes I can feel it coming and hold it but sometimes unknowingly it comes out and the pad between my cheeks is wet. I always had mucous when my old defective pouch was disconnected and I know its normal but never had the leakage. I am just concerned when I get connected I will be leaking stool. I know stool with be thicker than mucous so might not be an issue, but if there are times I cannot feel it, I am worried it will be same way with the stool. What was your experience with this?

Well,  every now and then, a little mucus would seem to slip out. It was not a large amount by any means, but it would just kinda happen.

If it was anything of substance, i would easily feel this and be able to hold it. Did i soak myself every now and then? Yes. Has it been any indication of how my pouch has acted? Not in the least.

Again, kegels seemed to have helped a great deal as i have full control.

dtmack posted:

Well,  every now and then, a little mucus would seem to slip out. It was not a large amount by any means, but it would just kinda happen.

If it was anything of substance, i would easily feel this and be able to hold it. Did i soak myself every now and then? Yes. Has it been any indication of how my pouch has acted? Not in the least.

Again, kegels seemed to have helped a great deal as i have full control.

sounds exactly whats going on with me.. how long from the mucousectomy till you got pouch attached? I am 8 weeks from my surgery right now and will be reconnected March 7th

They waited 3 months from time of mucusectomy to connection. By that time, I was completely healed from the procedure.

uuuuuggghhhhhhhhh.. woke up this morning with soaked underwear and pad between my cheeks from this damn mucous... Really worried about this when I get connected.

Momma posted:

Yes, you are correct that is a mucosectomy.  My husband had it done too, and he has no problems whatsoever.  The way I see it, it eliminates the chance for cuffitis and cancer.  And seeing that colon cancer runs in the family I think it a good idea.  I'd hate to have him go through this surgery only to suffer with cuffitis or wind up with cancer.  Why not eliminate that risk up front?  Anyone else have experiences to share?

did he have any issues with mucous leaking prior to getting reconnected? I am having some issues, sometimes I feel it coming and can hold it, but sometimes I go and check the pad and its wet but I had no idea I was leaking. scares me a bit about getting reconnected and crapping myself. I wouldn't think kegals would help cuz that has to do with muscle tone, I had the manometry test and my sphincter muscles are normal. But the mucousectomy deals with nerves down there and I am hoping I don't have a problem

Unfortunately my mucosectomy has been the worst surgery I've had. Lost nearly all control of my bowels, eating immediately forces me to use the loo.

When I had my j pouch redone they did hand sewn. I have no problems with that, other issues like pouchitis not related but no leakage and can fart. Make sure you have a very experienced surgeon.