Chronic intestinal pseudo obstruction-CIP

as far as your questions about resections is concerend: well, in my opinion you cannot generally say that they should be avoided at all costs and that they don't have any benefit. I think it depends on the residual motility of the bowel and if there is the chance that the resection can improve the quality of life (kind of palliative intervention).
Maybe it does not necessarily contribute to a healthier state (in medical terms) but nonetheless it can have a positive effect on your life when it improves the quality of life by reducing pain etc. (even if this improvement is only temporary or the deterioration process is only delayed).
When I was in Bologna, Prof. Stanghellini told me about a young woman who managed to life a nearly normal life after colectomy for about 20 years. Then, suddenly the disease spread on the small bowel and it quickly worsened so that she need total parenteral nutrition now.

However, a resection may worsen the condition/motility when the entire small bowel is affected in equal measure (either by a direct, yet unknown mechanism or by producing adhesions). Furthermore, a colectomy may be less harmful than a small bowel resection since shortening of the small bowel means shortening the distance in which the small bowel could absorb the nutritiens. The colon is only a storage for food and absorbs water.

I have some other questions:
Are you able to work or pursue studies/further education?
Have you already experienced this subocclusion-like states before colectomy?
Do you know your transit time of the small bowel (the time the barium took to passage the entire small bowel)? Have you been told about the severity of the delay in the small bowel?
Have your symptoms increased since this testing so that the motility could have become worse?


I hope you don't mind my questions.. I don't want to ramble or get on your nerves...

Sarah

kirsteen.

I am glad that I can communicate with someone who also have CIP caused by smooth muscles degenerations.

Can you tell me a little bit more about your testing, your medical history etc..? Did your docs decide to remove so much of your small bowel due to the CIP (because normally docs are very hesitant to do resection when you have CIP) or was it done at emergency?

What are your main symptoms/which were your main symptoms? And how much of your digestive track is affected? Wich part is mostly affected?

How much has quality of life improved after your small bowel resection?
Do you still have your entire colon?

Have you had symptoms already after birth? If yes when did you expereinced your worst deterioration? and how much time did the disease need to progress to the extent you exprienced before the small bowel resection?

Thanks so much for sharing your expereinces with me...

Sarah