Have Any Of You Had To Have A Colostomy Due To Gi Issues

[anna]

HI all,

I thought I would see if you guys might be able to shed some light on this matter! A friend of mines mother had to have a colostomy about 3 years ago due to her gut deciding not to function any longer! This lady has EDS, Addisons and we believe Autonomic dysfunction (but this has never been looked into) suffered many years with GI mobility problems. About a week or so ago she was rushed to hopital with sever dehydration, she had 20 bags of fluid! to get her back to the land of living! Anyway her problem is that anything she consumes is going through her at the speed of light and not being absorbed, leading to this dehydration and malnutrition, now the Dr.'s here are at a lose what to do one wants to move the bag but due to her EDS they are worried! and so on. I was just wondering if any of you guys have come across such problems and how was it delt with, I heard mention before of a gut pacemaker or some such thing was I just dreaming or is there such a device!

Any ideas I would be very greteful, thank you.

Anna

[Maxine]

I know SLOW gut motility problems can come with ANS dysfunction. However, with EDS people are usually consitpated from what I have read, but I have only inquired with people that have problems related to mine. I don't have gastroparesis that I am aware of, as my GI motility test came out fine.

I have 3/4 of my large bowel with diverticuli, only sparing the ascending colon, and 1 very large on in duodeum, and this makes me feel very full quickly when I eat----------ALL caused by EDS.

Has celiac disease been looked into?

There is a GI pacer, and I know a couple of people that have them, but mixed results.

Where would they move her colostomy bag too? I'm not sure I understand what your saying about that.

I hope they find a way to help her gut to function better.

Send her a hug for me, and HUGS to you for reaching out to help her like this---

Maxine :0)

[anna]

Hi Maxine,

Thanks for your input, the odd thing is that for many many years this poor lady suffered constipation due to her EDS, she had lots and lots of meds for this, (I wander if that might be the root of the problem!) then suddenly no more bowel function period, food just passed through to fast to be absorbed. One Dr. wants to move the bag from top end of bowel to a lower end in hope of some slowing down of transit! All a bit odd I really do not think they have thought this out at all well.

Thanks again Maxine.

Anna

[MelissaCrystal]

I had an upper and lower endoscopy and they found irritation but nothing else. It was a waste of money =( I made the mistake of being vague and they didn't look for weird stuff like motility. I'm not even sure you can diagnose anything like that without having some other special procedures. So I have no clue what they're going to do for my GI issues--I haven't found a competent doctor yet.