Parent of older child with short bowel syndrom


#1

My son is 18 and now only has 10 inches of small intestine. I would be interested in finding more adults with this syndrom and how they are dealing with everything. My son has been off TPN for about 7 months; however, he is having trouble adding weight. He also has a lot of stomach discomfort…gurgling, pressure. Any information would be appreciated.


#2

I am a 36 year old female with SBS. I am still on TPN 2 x per week but when I am off I, like your son, have trouble maintaining the weight. Does your son have problems with Diarrhea? I have been prescribed Opium drops to use before meals as way to slow down the digestive process. I have found this to be incredibly helpful. Without it, food that I eat is never given a chance to digest properly. Medication is often the last resort for some people but it has helped me and, for me, there have been no negative side effects. I take five drops in about 4 oz of water before each meal. Good luck to you and your son. SBS is often misunderstood and can be embarassing for those of us struggling with it to talk about. I wish him the best.


#3

Thank you for the quick reply. It is wonderful to hear from someone who is actually dealing with this. I will look into the opium drops.
My son just started a blog at:


Anyone who would like to check it out and add a comment is welcome.
Thank you again for your response.


#4

I’m a 34 year old woman who lost her small bowel 3 years ago. I’m on TPN everyday. Lipids 3x per week. I too have had the ups and downs of recovery. I’ve found that the best foods for me to eat are meats and starches followed by vegetables. The worst food that cause the most problems are greasy, fried, anything that causes gas, too much sugar, or too much liquid.
If I want something that causes problems, I try to eat it with some of the other better foods to dilute any of the negative side effects. Sometimes this seems to work, others I’m sorry I did it! Anyway, I wanted to also add that my dr.'s had tried me on an opiate called Lomotil, I don’t know if it is the same one shamroc12 is talking about… I initially didn’t have success with it. I just take 2 Imodium before every meal. This seems to be working pretty good for me. But I was out of Imodium for a day or so and I tried the Lomotil again, and it seemed to slow everything down and work better that the first time I had used it.


#5

Thank you for replying and posting on John’s blog…it helps to hear from other people going through this…FYI…John has stopped eating all pasta this week…his discomfort…bloating, gurgling, pressure,…has diminished greatly…we have read that many people limit their intake of carbs…maybe there is something to it…John’s weight is even up a few pounds…


#6

That is great! I know that for me it is all trial and error. And you are right about just hearing from someone else who has gone through all this. I definitely have felt alone at times and that no one could ever understand what it is like to deal with the issues of SBS. During my three year recovery I’ve had three line infections all pretty much back to back in the first year. We are now keeping me infection free using a vanco lock at the end of my infusion. For more information & support try: http://oley.org/


#7

My sons doctor wants him to try the probiotic VSL#3. Has anyone out there with SBS tried this?