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New Pouch

New pouch and new to the group.  Tried to read a fair amount on the site so as not to be repetitive, but there is a lot I'm sure I've missed.  30 years of colitis, then rectal cancer.  So, total colectomy in July, and take down last month.  I'm almost 60. 

So have some questions.  My surgeon is suggesting I not use either metamucil or similar substances, nor imodium for six months, the theory being I do not want to be dependent on those substances.  Rather, if I allow my pouch to retrain without the substances, I will be freer to use those as needed rather than have no choice but to use them all the time.  Have others received similar advice?

When I had the ostomy, since the pouch was created and hooked up to my rectum, there was butt leakage.  Disgusting leakage at first, then towards the end of the two months, mostly just watery.  Now with the take down, I still have leakage, although now its usually liquidy fecal, and this is throughout the day. Equally annoying, I'll feel like I've leaked some, drop trou to wipe, and there is nothing - we'll call it the phantom leaks.  The doc says it will pass in a few months.  It's really more annoying than the bowel movements, which I can mostly control.  I've been working on the butt muscles since the first surgery. It's better, but still I can't seem to hold the leaks all the time.  Common occurrence, or uncommon?

Gas?  It builds up, and since I can't safely pass gas, it gurgles and then goes back into the gut.  With all that activity, I would assume that when I sit on the can it would come blasting out.  But I have days (and it is worse in the evening hours between dinner and bed) where I go to the bathroom and nothing.  I'll have fecal matter come out, but no gas.  And I can still feel it bubbling, and the pressure.  Again, common, or just me?  And it seemed to get worse when I tried Beano. 

The whole process has been daunting.  Between the radiation, chemo and the surgeries, along with other complications, I've been a house prisoner for most of the last 8 months.  It has gotten better since the take down a month ago.  I was going probably 20 times a day, now its more like 7-9 times.  

So tell me positive things and let me cling to the hope that at some point I will have a life again beyond the walls of my house. 

RICKM

 

 

 

 

 

 

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