Longterm outcome of colectomy for CI/general motor dysfunction

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pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/16/2009 8:17 AM (GMT -7)   
Hi guys,

I am a German girl suffering from Chronic Intestinal Pseudo-Obstruction (general motor dysfuction, not only CI affecting solely te colon) that affects my stomach, small and large intestines and my bladder.
Although I was probably born with CIP I just got my diagnosis in December 2008 from an Italian motility expert after several years of increasing suffering and being accused of having anorexia/psychic problems. I assume you all know this difficult route.

In December 2008 I got an ileostomy after three extensive bowel resections that had not brought me any relief. I am glad, the ileostomy finally did help and I have now a better quality of life so far.
However my sugeons decided to remove the last part of my colon, too as it was grossly dilated and hardly supplied with blood. In this way they did not consider the recommendation of the motility expert in Italy I had gone to and had finally given me my diagnosis.
This expert had recommended a temporary/decompression ileostomy to decompress the residual large bowel but any further resections should be avoided. Since CIP is mostly a progressing disease and tends to affect the entire GI tract progressively with an increasing severity resections of the colon could accelerate this process. The disease might shift to the to the small intestine with a greater extent and with an increased severity so that resections could make things worse. At the moment my small bowel is less affected than the large bowel was.

I already read some stories of people here who underwent colectomy and experienced worse symptoms after 6months or a year or who developed severe gastroparesis symptoms then.
I have the impression that my original stomach function has been deteriorating even independently from the bowl function.
The removal of the colon and the lacking pressure of it upon the small intestine and the stomach helped a lot as the stomach symptoms had been increased by this. But I do not experience the great relief of the stomach problems I would have assumed. I rather have the impression that the original stomach function has been continuously deteriorating.

To come to an end: I would like to hear about your experiences for colectomy (due to colonic inertia etc.) and its long-term outcome(impact on small bowel/stomach motility)
I know that there are some people who experience constipation and obstrcutions even after colectomy....)like Lizzi etc.)

I would like to hear from your experiences. Thank you very much and sorry for my English!
Sarah

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/16/2009 5:30 PM (GMT -7)   
Sorry I cannot help with your questions, I have a Crohn's dx, but I wanted to welcome you to the forum! Someone should be along to help...and, your English is wonderful:)

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/16/2009 7:31 PM (GMT -7)   
OHIO76 said...
Sorry I cannot help with your questions, I have a Crohn's dx, but I wanted to welcome you to the forum! Someone should be along to help...and, your English is wonderful:)
Gosh Ohio76 - you took the words right out of my mouth!!!
 
I have CD, perm ileostomy too.  So I won't be able to help you with any information.  Welcome to HW.com.   Check back for more posts soon. 
 
And yes, your English is great... no need to apologize at all!
 
Best of luck to you,
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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