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Good morning to all,

 

I've had ulceritive colitis for 30 years ( im 48 ) - in november 2014 and after a coloscopy we found a lesion in my right colon that had cancerous tissues. This was removed and i am living for now with an ileostomy-during the operation 25 samples were taken and all came back benign. -the operation of continuity was programmed the 10th of march but due to a flare up in my left colon was cancelled. the surgeon in paris in charge of my file as well as the gastroentlogists feel that the safest would be a total removal of my colon and rectum and the construdction of  a j pouch since the risk of cancer coming back is over 20%. I would like to know from some of you if living wiht a jpouch has caused a dramatic change in your lifestyle. I am someone who travels alot ( 15 long hauls of 12hours + per year ) With Ulceritive colitis  I was going to the washroom 3-4 times a day. will the j pouch make these visit much more frequent ? If i take immodium can i reduce the amount of visits to the toilet? Thank you all , regards Bruno from Paris

 

 

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For me, it was a fairly dramatic change, for the better! I was in a severe refractory flare with 20-30 BMs per day by the time I opted for colectomy and j-pouch. 

 

I have a higher than average frequency, more like 6-10 on my good days. Imodium (loperamide) does reduce frequency, but I try not to try to thicken my output too much. It can take 6-12 months before things settle down to what your long term function will be. Sure I can do long haul flights and travel, but I plan well. I take extra Imodium those days and am more careful about my diet choices. Plus, I always book an aisle seat, so it is easier to get up to the restroom during a flight. For me, my arthritis is a bigger challenge on long flights than my j-pouch.

 

All things considered, I would think a return of cancer would be far more disruptive than proctocolectomy. To me, it is a no brainer in favor of further surgery. The bad news about colon cancer associated with UC is that it can go from no lesions to advanced stage cancer without warning. Once you get past the second decade, the risk goes way up (particularly with pancoloitis). You were "lucky" to have been given the warning.

 

Bottom line, it will probably be a challenge, but you will adjust. Good luck with whatever you decide.

 

Jan

 

 

For me, it was also a dramatic change for the better. I didn't have cancer but I did have dysplasia, and my colon was very close to perforating. If I interpret your post correctly, you are trying to choose between ileostomy and J pouch.  I quite frankly hated the ileostomy when I had it, and even though it was a temporary loop ileostomy, there were clearly signs that I was going to have problem with any type of ileostomy. My skin reacted severely due to placements of ileostomy bags resulting in a chronic yeast infection and skin inflammation that was only cured by takedown. I never adjusted to it mentally. Honestly,  having gone through this experience, I am kind of shocked that anyone would even consider an ileostomy as a preferable option to 2 or 3, or even 5 extra bowel movements per day. While I can appreciate that if a person is employed as a truck driver and can't afford the stoppage of time associated with a number of bowel movements, if I were a truck driver, I would be more inclined to seek other employment more appropriate to my condition as opposed to adjusting my body to the employment. But that's just my own opinion.

 

I'm actually employed as a trial attorney and although having a J pouch could potentially impact me during trials and long hearings in court, it hasn't, I think in part because of the adrenaline flow during such events, and partly due to the fact that the way our judicial system works. There are breaks and recesses during which I can use the restroom if need be. I do remember on one occasion warning a trial judge at the outset of a trial that I had "gastrointestinal issues" that could force me to request recesses on a moment's notice. I never actually had to during the trial. I have no explanation for this, except that somehow adrenaline has gotten me through these situations. It's actually something of a miracle to me.

Last edited by CTBarrister

Bederyparis,

Did you say that you are in Paris? 

Who is your surgeon? Where are you being followed?

There are certain surgeons who speicalize in open surgery and others do the j pouch through laporoscopy...I feel that the less they open you up the better. 

I agree with Jan, better a pouch than colon cancer. 

Some people are 'pouch lucky' and their body's adapt and settle down within 6 months...they go back to a new 'normal' life where they are pretty free to live any way they like and do not need to make special consideration for their pouches...you may be lucky and be one of them...a small percentage of the others have frequency, irritation and other pouch symptoms.

No matter what it is still better than colon cancer.

Just my opinion. 

Sharon

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