Short Gut Syndrome Parents' Support Group
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Next Support Group Meeting

February 27, 2010
10:30 a.m.

Taylorsville Library
4870 S. 2700 W.
Salt Lake City, UT
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narrowing of small bowel

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By: catinab          (1:09 PM 01/04/2011)
I have a nine year daughter who was recently diagnosed with SBS because the surgeon told us the day he did the surgery (at two days old) that he had to remove 60% of the small. Told us alot of scary things. But then put in his report he removed 6cm. Every year two to three hospital stash. My finally breaking point was in Oct five Dr.s told us we don't know what is wrong and sent us home. Called UAB and made an appointment. They were great. They agreed he removed 60%. So now she has pain everyday that comes and go. She never stays hydrated. After a stay in the hospital with IV fluids she looks good. Two days after we home back to looking pruny. This last week she is pale and drinking a lot. Craving salt. Local Dr did electrolytes and was fine. Last night was nauseaed. I want to be proactive before it is an emergency. Any suggestion? She only weights 50lbs.

By: Emily H          (9:37 PM 01/04/2011)
Welcome to the group! Although I'm sure there's a lot of 9 years of life that we're missing in this short introduction, I can tell that you've been through a lot. We have a few parents in our group of older children and I hope you can get to know them and help to find some answers.

Sounds like the biggest thing you need is to work with a good GI and dietician who can help her to find a diet that will help keep her hydrated. I know of some older children and even adults who've needed some tube feeding to supplement normal diets to stay hydrated... Sometimes just for a while so that the intestine can adapt. Others have benefited from just adding elemental formulas and drinking fluids specifically designed to maximize hydration.

Where are you located? What's her diet like?

I don't recognize the abbreviation UAB. What is that?

Best of luck. Hope we can help.
By: Renee          (3:25 PM 02/08/2011)
My four year old has had several hospitalizations and we have found he gets sick when he begins to be dehydrated. Finally I talked the doctors into giving me Lactated Ringers (250ml) to infuse into his broviac once or twice a day. I got to where I could tell if and when he needed them by the looks of his eyes. The good thing about rehydrating at home is that if his body does not need the fluid it doesn't hurt him but we kept him out of the hospital for 6 months at a time just by giving him replacement fluid every day. He usually needs the LR but we have also done normal saline. He is on daily TPN but for some reason his body has a difficult time retaining the fluid he needs. They have compensated for the replacement fluid in his TPN but after a few weeks we find I need to replace also. I haven't needed to replace fluids now for about 4 months. He is four years old and his body is learning to compensate and he takes in more fluid orally. He probably realizes he needs a drink more often.
By: Nick's_Mom          (11:07 PM 02/09/2011)

I have an 8 year old that gets dehydrated and that makes his CO2 go very low. He gets confused, and whinny, and weepy. We can tell when it's low. Right now he has a PICC line so we can give him IV hydration every night. (had this put in in Oct. 2010) This weekend will be our third attempt to wean him off of this. (wish us luck!)

His major problem seems to be bacterial overgrowth. Could this be an issue with your daughter? Might explain the tummy aches. Does her tummy ever get bigger and harder? Or does she have out of the ordinary foul smelling gas or poops? Those are the biggest signs I think. Most kids respond to oral antibiotics for this issue very well.

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