Great Support for Newbies

[jazzyblu]

Hello All. I have a Dear Friend who has crohn's. She does have a colostomy and has had all of the surgery they (local DR.s) are willing to perform. This includes the specialist in Seattle. She is now dealing with an ILEUS. I have been researching and this seems to be a paralysed portion of intestine? Can be temporary, due to medication? She has been told all that she can do is just go directly to the ER when the pain gets to be too much and they medicate her and start TPN. They tell her that any and all food has an impact. Meaning she does not need to watch her diet because it does not matter, any food will bring on the pain. We have many questions, but will break it down to doable chunks. She had no discussions with anyone regarding her colostomy. She feels like a freak. Also when she goes into the hospital she is so medicated that she loses track of time. Her last stint was 8 days and she cannot remember any of it. It is like she has to start over every time she comes home and knowing that it could only be 1 week of being home before she goes back in. She feels like she cannot wrap her mind around anything. First and foremost she has Christ. This she knows and a very loving family. What can we be doing to help her through this nightmare. I am so impressed with this forum and the many different people on here. What a wonderful thing to be doing for each other. Support is incredibly important. Peace to each of you!

 

[Cara Fusinato]

Welcome to the forum and thanks for being there for one of our community.

I have strictures and food can get stuck, waiting to break down more to go through the narrowed parts. When I was first diagnosed, I pretty much had the same thing -- an area paralyzed by several things at once (illness, bad eating, codeine, stress, physical exhaustion). During that time, I couldn't eat anything solid. I pureed everything in a food processor (lasagna still tastes good, believe me!). Perhaps eating less solids would help.

To say that it doesn't matter what food, seems a little hopeless. I know that raw veges, fiberous fruits, and a few other hard-to-digest foods will be tough on me and I avoid them. TPN does remove the burden from the intestines and people can live on TPN permanently. Perhaps it would be worth researching the use of a PIC line for awhile to administer TPN until when / if the intestines can handle it.

 

[old hat]

Ileus is a fairly general term that refers to limited or absent intestinal passage. It can be caused by something physical stuck in there (mechanical ileus) or paralysis of the bowel (paralytic ileus). Ileus in Crohn's patients is most commonly mechanical ileus associated with one or more strictures. I had the same sort of problem last week.