Short bowel syndrome

I'm sorry you are stuck in the hospital. How much have you had taken out? Do the doctors have a plan for you in the long run? My mom had short bowel syndrome. She had to take a medium chain fatty acid (at least I think that was what it was called). She took about a tablespoon or so a day. She just chugged it down, but it could be put in a drink or baked into things. She was really thin, but the fatty acid helped her to maintain her weight. She also ate about 2lbs of homemade fudge a week, and a few ensures a day. She was pretty active, up to the end of her life. She watched my daughters a few days a week and basically raised my niece. She had a very full life after her last resection. It was NOT the CD she died from. She was a life time smoker and had COPD, she died from pneumonia.

I hope you get home soon.

I am very sorry to hear how sick you are. I hope your children have someone they love and you can trust caring for them so you can mostly focus on getting better.

Short Bowel Syndrome (SBS) is defined based on the length of the remaining intestine and on the way your bowel is behaving. It can be very difficult to determine the actual amount of small bowel left but it is very easy to identify the symptoms and effects of SBS.

My sister has SBS. It is very important that you get the right kind of care over the next 2 years (beginning now) to make sure that what's left of your bowel works as well as it can and that the diarrhea is controlled.

This care is very specialized and not many doctors/clinics know how to manage a new SBS patient. So if you can, you should ask lots of questions about how many patients they have with SBS and what they are going to do to help make sure your bowel adapts to the changes.

Best wishes