Re: Re:Abdominal pain with standing, stomach erosion

January 26, 2004

Hi,

I am the mom with the 18 year old daughter who had her entire large intestine

removed at Mayo Clinic this past June. (She has no bag; they connected the

end of the small intestine directly to the top of the rectum with titanium

staples that stay in her forever.) She supposedly has classical EDS and tested

negative for type IV, but she has had a lot of vascular problems.

The surgery went well, but she still has a lot of lower abdominal and lower

back pain with standing, even for short periods of time, especially if she has

recently eaten. She says it feels like her intestines are pulling down--kind

of like if you wear too heavy of an earring on pierced ears. This November

she had some very black, stools that were hemocult positive for blood, and her

hemoglobin dropped into the 9's from a value of 12 a month earlier. Mayo did

look at where they stapled her inside, and it was very narrowed, so they

stretched it. They think what happened was the narrowed connection caused

obstructive type symptoms, which caused bile from her small intestine to back up

into

her stomach and cause erosion/bleeding. They had to stretch the connection

again a month later, but it still seems that when she is on her feet a lot (like

an hour or two of shopping at the mall--just the normal teenage stuff), she

has a lot of lower abdominal pain, and the next day she has several mostly

liquid black stools. We are wondering if she is swelling inside with the

standing,

or if her small intestine could be drooping, or if she has some type of

adhesion farther up. The Mayo gastroenterologist suggested Nexium and to keep

her

checking her connection to be sure it hasn't narrowed, but doesn't seem to

want to pursue it farther and had no other ideas for us.

Maybe it just takes time after surgery, but it has been 9 months and she

feels fine other than she cannot stand long without pain, especially after

eating.

It is also hard for her to eat much at night without pain and distention.

She feels best with eating more for the morning and evening meal and little at

the dinner meal, and lying down after eating, but this is hard to do for an

active teen.

Any ideas/suggestions would be appreciated. Also, had anyone had experience

with Nexium? Have they had any side effects. It doesn't seem to be doing

much, and since the bleeding is supposedly caused by bile rather than acid, I

don't know if it would help that much.

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