new and scared..possible colon removal

 My question is... what will happen if this shows that? I'm kind of confused about a subtotal colectomy and total colectomy and also if you have to have one of those do you have to have an ostomy bag? What is the indication for having one of those verses just connecting the small intestine with the rectum?  I have also heard that if you have to have this done, the "cleaveland clinic" is the place to be. Any thoughts on that? My Dr. is very good but hes one of those that is SO busy that he doesnt spend any time talking to you.  I would appreciate ANY help any of you can give me. At this point my quality of life is pretty much gone, so I'm hoping it can only get better.  Thanks so much!

Welcome!  I assume that by your description you have colonic inertia?

I opted for j-pouch surgery 5 years ago due to Ulcerative Colitis.  Unlike you, my condition was chronic diarrhea.  I have been thrilled with the results and am so grateful that this was an option to being chronically ill.  Do you live in Ohio?  The Cleveland Clinic is a terrific place to go for this surgery but there are a lot of other fantastic CR surgeons around the country that perform this procedure.  For more information I suggest you visit www.j-pouch.org  There are thousands of j-pouchers registered to that site that can provide you with more information if you are interested in the procedure. 

Because you don't have UC, I imagine it's possible that your small intestine can be connected to your rectum.  For those of us with UC we lose our rectum as well as the colon.  It is also possible to have this surgery without having a temporary ileostomy but no surgeon can guarantee that, it's determined on the operating table.  This surgery has given me my life back, I hope it can do the same for you!

Sue

Hi there,

Just a quick note -- I've been a member on the colectomy series of posts for a while -- had a subtotal colectomy for colonic inertia in January of '05 and it has completely changed my life for the better.  I am in Chicago, and my surgeon did his residency at the Cleveland Clinic.  I am biased, but truly believe he is one in a million.  He and his surgical partner work together and they are a great team.  I'm sure you have great medical care in WI, but if you are interested, I can give you his name and info for a referral.  You can e-mail me at [email protected] if that's easier. 

Best,

Avery

To Mom 23:

As I am reading your posting, it is a mirror image of what I have gone through.  I am 50, had severe constipation for 25 years.  Two years ago, I finally found a surgeon who didn't think this was, "all in my head" and tell me to eat more fiber!  I had colonic inertia.  I too, could tell them before they even did the xrays that the markers would still be there.  Who knows their body better than us?

I had a total colectomy, where they removed the entire colon.  I had a few problems and had a 17 day stay at the hospital, but all in all, it was OK.

My only struggle now is the reverse--two years later I still have liquid stools about 10-15 times a day.  So, I cannot eat breakfast or lunch and work--as I have to run to the bathroom.  Interestingly enough, I have gained 30 pounds since surgery and can't get it off.

Go figure, constipated for a lifetime and no weight issues--have a total colectomy and gain weight!

My two concerns are the liquid stools after two years and the weight gain.

Anyone else have similar issues?

Arleen913

Hi Mom23,

I'm happy to give you the name and info for the surgeon here in Chicago -- I'd prefer not to post it on this board.  If you'd like to e-mail me, please feel free.  I was in the hospital for a week (last year) -- and now I feel like a new person.  Everyone's experience is a little bit different, just like our bodies are all a little different.  It takes a while for your body to heal in various ways, and I don't have constipation issues any longer.  It took some time to feel like I was in control of my body after surgery -- I think a lot of people would agree with me on that.  You have good days and bad days, and go through some dietary restrictions and eventually add in different foods, etc.  It is totally worth it.  I wish you luck in your journey and decision-making.  Feel free to contact me for specific questions.

Avery