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hi guys, i had my first surgery three weeks ago. it was a proctocolectomy+jpouch formation+temp ileo.

 

the problem i've been having is that i keep getting leakage from my bottom at random times (mostly when I'm moving around / sometimes at night). I try to pass mucus almost every time i empty my pouch (and it comes out) but i still get these leaks. it's really frustrating and it has me concerned that i'll continue to leak after my reversal.

 

any suggestions would be much appreciated.

 

thanks, andrew

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Hey Andrew,

the easiest thing to do is to train your sphincter in the time it is not actively used. I would recommend to really do that.

On the other side you have to keep in mind that this is not the end of the line. The consistency of your regular stool (once you are reversed) will be firmer and therefore it will be easier to deal with leakage, maybe you won't have any.

So try your best to train, keep your head up high and don't worry too much about it! 

Best regards!

Looking back I have to laugh at my surgeon telling me to do Kegels when this happened to me.  I have to laugh because I'm sure my doctor had never had the challenge of trying to keep that ultra-slippery substance called mucus from doing its own thing.....regardless of Kegels!  So, wear a pad in your unders and don't worry......it's true.......this will in no way be a problem when you are reconnected!  In fact, it will help move the effluent out of you easily!

 

min990 posted:

hi guys, i had my first surgery three weeks ago. it was a proctocolectomy+jpouch formation+temp ileo.

 

the problem i've been having is that i keep getting leakage from my bottom at random times (mostly when I'm moving around / sometimes at night). I try to pass mucus almost every time i empty my pouch (and it comes out) but i still get these leaks. it's really frustrating and it has me concerned that i'll continue to leak after my reversal.

 

any suggestions would be much appreciated.

 

thanks, andrew

When I had first pouch in 2008 I would release mucous every few days and never leaked. I had my pouch redone this past October and I leaked mucous a lot daily, sometime had no idea it came out. I had your same worries about after reversal if I would leak stool. I was connected this past March and I leak daily. I have to always wear a pad. Some days not much at all but some days the pad has a lot of stool. It tends to be more of an issue during the day than sleeping. Probably cuz I'm moving around a lot. Don't mean to scare you but I had same concerns and I'm trying to figure out if it's nerve damage from the mucousectomy or diet. My sphincter muscles tested normal. I'm experimenting with Imodium, Fiber, and soon Opium Tincture. Hoping to figure this out. 

hi guys, thanks for the advice and info.

 

i just thought id post an update with the situation. things are much better now. the mucus volume has decreased and I'm able to get better control now. no leakages thus far (only a small amount when i ran a bit). i started doing the sphincter exercises (theres a good pdf from St Marks Hospital online with these listed or i can send them if anyone needs them). they've definitely helped.

 

hopefully it stays like this!

Pouchomarx, been a month since you last posted about leakage following your pouch redo and mucosectomy. Wondering if you've had any improvement  with either time or Metamucil/lomotil or anything else you've tried? Has it gotten worse since take down? I'm scheduled for Mucousectomy and pouch advancement with possible redo of pouch next week. Obviously, I'm concerned about leakage after removal of those nerves. Thanks!

laurie

Ljz posted:

Pouchomarx, been a month since you last posted about leakage following your pouch redo and mucosectomy. Wondering if you've had any improvement  with either time or Metamucil/lomotil or anything else you've tried? Has it gotten worse since take down? I'm scheduled for Mucousectomy and pouch advancement with possible redo of pouch next week. Obviously, I'm concerned about leakage after removal of those nerves. Thanks!

laurie

hi, the leakage is same but not really an issue. When I go to the bathroom I put a small folded up piece of toilet paper right up against the hole, I just change it out next time I have to go poop. Sometimes there is a small bit of leakage there but sometimes not. I have never crapped myself. And really no leakage at night at all, just during the day. I have tried  to Metamucil and Benefibr but they tend to bloat me and screw with me so stopped taking them but didn't notice a real difference taking them anyways. I tried the opium tincture and no real difference either. I guess its just what it is. if I was crappy myself I could not deal with it but if every few hours I have a small spot on the pad, I can deal with that.

Ljz posted:

Pouchomarx, been a month since you last posted about leakage following your pouch redo and mucosectomy. Wondering if you've had any improvement  with either time or Metamucil/lomotil or anything else you've tried? Has it gotten worse since take down? I'm scheduled for Mucousectomy and pouch advancement with possible redo of pouch next week. Obviously, I'm concerned about leakage after removal of those nerves. Thanks!

laurie

so how did your redo go? do you have any leakage? mine is still minimum so who knows

Well, it's been almost 6 months since my surgery. Ended up, my new surgeon in chicago, who has recently come from CC, did a mucosectomy and pouch advancement, but did not feel full pouch redo was necessary. Mixed emotions on that. Obviously, really glad to not have had major 2 step surgery, but was looking forward to new and better pouch. No guarantees new pouch would be better anyway. But, surgeon felt my issues were with cuff and he was able to reconnect pouch successfully.  About a week after surgery, prolapse returned, despite him thinking he had removed the flap that was protruding- so we now know its the actual pouch prolapsing. Dissappointing, to say least. Mostly things good after first month with changes in meds- no more Metamucil, Immodium but not Lomotil, and he wants output looser than before. Like before my surgery, I can hold liquid  output quite long, but starting in last few weeksto experience more leakage of soft stool, especially at night, and prolapse more pronounced. Seem to be struggling with inflammation and gas, too. Also need to take Colestipol for acidy output, gas-x trying to control gas and trying to take daily probiotic. My new gastro said at November appt. that I could add Lomotil in addition to Immodium. May talk again with him about that as my last 2 weeks have been increasingly difficult. Having some family and other stress that I feel may be contributing, so trying to get handle on that too.  For now just trying to make adjustments and no thoughts of further surgery (pouch redo) for awhile. Hope you're continuing to do well with your new pouch! 

Laurie

min990 posted:

hi guys, thanks for the advice and info.

 

i just thought id post an update with the situation. things are much better now. the mucus volume has decreased and I'm able to get better control now. no leakages thus far (only a small amount when i ran a bit). i started doing the sphincter exercises (theres a good pdf from St Marks Hospital online with these listed or i can send them if anyone needs them). they've definitely helped.

 

hopefully it stays like this!

I would love a copy of that link. I am doing pelvic floor of strengthening exercises but I am wondering if it is actually possible to strengthen the actual sphincter muscles?  I know you can train your pelvic floor. Id love any advice anyone has on how to improve this situation? 

Thanks 

FelixGust posted:
min990 posted:

hi guys, thanks for the advice and info.

 

i just thought id post an update with the situation. things are much better now. the mucus volume has decreased and I'm able to get better control now. no leakages thus far (only a small amount when i ran a bit). i started doing the sphincter exercises (theres a good pdf from St Marks Hospital online with these listed or i can send them if anyone needs them). they've definitely helped.

 

hopefully it stays like this!

I would love a copy of that link. I am doing pelvic floor of strengthening exercises but I am wondering if it is actually possible to strengthen the actual sphincter muscles?  I know you can train your pelvic floor. Id love any advice anyone has on how to improve this situation? 

Thanks 

 

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