Life with Ehlers Danlos Syndrome: Back to Ohio for more tests

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P.O. Box:
Goodwins
P.O. Box 476
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37121-0476

[@alysonp5844]

Love Yr top love, love the vampire diaries. Just wondering have they talked about having an ostomy bag? That's what I'm waiting to have and a peg-j. They didn't think of the button to irrigate but they told me it wouldn't do anything and my large bowel don't move at all, they Call it something different here in the UK and would place it on the right side by the connection to small bowel and large bowel. I have a irrigation system that holds 1.5 leters and I have to do 6-8 of them and takes about 2 hours to get done and half the time I still have loads of fluid left behind that just don't move, savanna is the 3 person I come across who needs help with bowels aswel like myself. She is a little super star as these conditions are no fun and so hard and time consuming. U must be so proud of her. I only found u guys on here a few weeks back and glad as u all are so sweet. X

[@ashleyl84]

Yes yes yes!!! I’ve said that about my kids so many times! I don’t want them to be sick, but there is something going on and I want answers to be able to figure out how to help them out. I have a toddler who has gastroparesis and we are currently trying to figure out some other things. I also have a 14 year old who’s having issues feeling faint and we are finally getting the drs attention after 3 1/2 years to do testing, but so far it’s mostly come back normal(other than her eyes do a twitching thing that they aren’t supposed to do but that’s tbd on what that is) which is so frustrating!

[@highmater]

I have a question, when did Savannahs doctor agree it was time for a malone? Im having severe backup, ive been in the hospital three times in the past two months needing a clean out. They now have me on daily enemas and laxatives but thats not really helping much...Im just wondering if this is an EDS thing and if I should mention a malone to my GI

[@UniquelyZebras]

From what I have learn it is a common issue. Have you been checked for a redundant colon?

[@christineclarevilgos-mitch1955]

Does Savannah's ever have trouble gaining weight even when she is eating well? I have times when eating is hard and I don't eat or eat less; but I also don't really absorb calories well and I don't digest fats or absorb them well either. This means that even when I eat I often still struggle with actually gaining. Most of the time if I gain its because I am backed up and thats not real weight gain technically. My doctors have basically accepted the fact that I am just freakishly thin and small framed; but being tall it makes it look worse and I think it effects how well I support my joints simply because I'm so long and lanky but there is not enough there to support the length.. I definitely agree that when I can't eat and my weight is down that POTS is way worse. I think it gets worse because there aren't enough calories or sugars available in the blood at that time. Because I'm already so small I feel a difference with even 5lbs difference.

[@UniquelyZebras]

From what we have been told Savannah does absorb her nutrients however getting her to eat is the issue here.

[@highmater]

It's sad that RMH is only for 18 and under, it would be so helpful. It wasn't a thing when I was little.

[@avahamilton5891]

how has savannah’s iud helped with her cycles? mine are super super heavy and painful, i’ve been on the birth control pill for 2 years and nothing has really helped

[@UniquelyZebras]

Yes she have very little cycle now