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Life after total colectomy -- what is it like for you?

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Posted 3/25/2007 4:36 PM (GMT 0)
Hi all,

I wanted to ask anyone who had total colectomy what life is like afterwards.

I had total colectomy last year after suffering from UC for about 4 years. I had a 3-step surgery cause my condition was so bad at the time. My surgeon had told me that I'll be going to bathroom about 6 time/day eventually. I thought I could handle that. I didn't have much choice anyways. But I didn't know that I would feel this urgency everytime I have to go to bathroom. It's been more than 7 months since I had last surgery but I'm still going 6-10/day. Sometimes I need to go 2-4 times every hour or so.

Fortunately, this isn't affecting my work that much but my social life is virtually on hold. I'm a single guy but am afraid to date anyone or even meet friends cause of fear of having to go to bathroom all the time. I also can't exercise anymore (I used to jog, ski, and play soccer) and am afraid to take any trips.

Can anyone who had total colectomy share his/her story what your life is like? Does it get better after a year or so? My surgeon told me it may take up to a year for my internal pouch and small intestines to adjust to its new role. But my condition hasn't improved at all for the past few months and I haven't been able to gain my lost weight (15 pounds). I'm eating normally but sometimes I'm afraid to eat cause of fear of having to go (especially while sleeping).

If anyone has any tips on how to reduce frequency of having to go, I would very much appreciate it. Thanks for reading.

Posted 3/26/2007 12:03 AM (GMT 0)

sad  BostonMan - I wish I had more answers for you, however, I don't!!  I had my total colectomy on 11-09-06 for Colonic Inertia not UC.  For those of us who've had the total colectomy for Colonic Inertia WELCOME several bowel movements.  I know that must sound strange to you, however, when one spends their life being constipated, frequency is a real blessing!!  I have anywhere from six to ten bm's a day and some days or better than others.

My heart goes out to you on your "social life" - I never liked "public restrooms" and avoid them as much as possible.  For me it's getting a little better, however, I refuse to eat if I know I'm going to be out and about.  I try not to eat a few hours before bedtime so I don't wake up running for the toilet. 

I think I've read that adding fiber to your diet will help "slow" things down - I'm not certain but I think I read that somewhere.  If I were you, I would get in contact with the surgeon and ask if he/she has any recommendations. 

There is another thread I'm active on in this forum called Total Colectomy - have you ever visited it?  Most of us are there because of Colonic Inertia, BUT, there are a lot of caring and informative people there.  Maybe someone DOES have some info about slowing things down.  Just a thought - it really is a great place!!!

Boy, men are surely different than women when it comes to their weight.  Here you are trying to put your 15 pounds back on and we women just pray our won't come back LOL - a little humor does the heart good!!

I hope you find the answers you're looking for and hope I was able to help in one way or another!!

Posted 3/27/2007 3:07 AM (GMT 0)
Robin: Thanks for your help. Well, I was thin to begin with before the surgeries and at one time I had lost 30 lbs so you can imagine I was literally like a stick. That's why I'm trying to gain all the weight back. I've tried the fiber option (Metamucil) but didn't work out well so gave up on that but I heard it does work for some people. I'm trying to be optimistic and thankful for what I still have but often times it's really frustrating as well. Anyways, I wish you all the best and thanks again for the tips.

Posted 3/27/2007 5:15 AM (GMT 0)
Bostonman, it's true it can take up to a year before the j pouch settles down. You might like to check out http://www.j-pouch.org for more info.

A lot of people find that by taking some Immodium each day they can thicken output and lessen the amount of times they have to 'go' a day but seek your doctor's advice first before doing this.

If all else fails, you can always return to the ileostomy if life with a j pouch isn't as it ought to be although, since it does entail another op, you should probably seek second opinions from a different doctor just to make sure that you're doing everything you can before resorting to more surgery.
Posted 3/27/2007 2:08 PM (GMT 0)
hi i'm a crohns person and had bowel incont,. before ileostomy six weeks ago. To thicken up stools prior to surgery used combo of lomotil, questran and loperamide
hugs
chip girl x
Posted 3/27/2007 4:16 PM (GMT 0)
Hi again BostonMan - I'm so thankful that "others" have great advise for you.  I do know that Colonic Inertia is totally different than someone who suffers with UC or Crohns and they're better suited for your situation.

Thank you Shaz and Chip for helping BostonMan with is questions!!!!!

Posted 3/30/2007 2:47 AM (GMT 0)
Thank you all for your replies and tips. Wish you all the best. It's good to know that I'm not alone in this ordeal.
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