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lisaann1170

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This is a long shot, but I thought I'd give it a try anyway!

Dad had an ileostomy way back in 1977 (as a result of ulcerative colitis) and had the majority of his intestines removed. We're working with his ALS neurologist and a gastroenterologist to see if they can make a PEG tube work. Dad tells me the neuro said a PEG won't work, but I think he misunderstood or simply wants me to believe it won't work because he is REALLY dreading this. Afterall, who would want two substantial abdominal incisions?!

If I understand all correctly, the PEG tube goes directly to the stomach while the ostomy re-routed the intestines. He may have to be more cautious of how much is inserted into a feeding tube at one time because the distance from A to B is quite short, but I can't imagine this CAN'T work.

So, has anyone heard of anyone with an ostomy and ALS? Similarly, has anyone heard of a feeding tube NOT being an option for a PALS?

Thanks!
 

BethU

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Lisa ... my mom had a colostomy, so I know what your dad is going through. I think an ileostomy is harder to care for than a colostomy, so it makes sense to be cautious.

However ... a PEG is really a small incision. In fact, it's about the size of a belly button. Mine is a couple inches above my waist. The PEG tube is much smaller than I remember my mom's stoma opening (is that the right terminology?). My tube's a quarter inch across, very small. You put food in through a funnel and have complete control over the rate it flows, and the amount of any feeding. I'm sure that anything he could eat by mouth with his ileostomy would be fine in the tube.

I've never heard of a situation where a tube could not be used, unless the patient is too weak for the surgery, but your doctor will be able to give you the real advice on this. The PEG surgery is a snap compared to an intestinal resection. Mine lasted about 15 minutes, and I didn't even have to get undressed.

Hope this helps.
 
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