# Continually worsening



## Ngawhetuatatu (Dec 15, 2016)

I have been suffering since May 2010 when I had a GI bleed. I have since had miriad tests over the years which have shown that I have severe IBS (by far the worst my gastroenterologist has ever seen). BUT WAIT! I have also been "diagnosed" with gut motility disorder as there is no name for what I have. The gastroenterologist started by telling me that he would rather tell me I had stomach cancer as he could do something about it! Then he said to think of it like my stomach has had a STROKE and has forgotten what it is meant to do with food or more than half a mouthful of liquid and it severely contracts and violently expels whatever I have just swallowed!!!

I have severe pain for which I take morphine, both fast and slow acting. My diet is pathetic as I gradually became unable to keep down 1 food group after another. First it was vegetables, then fruit, nuts, dairy (which actually curdles before making a reappearance!). I have adult formula which I have in order to get the nutrients I need.

I am on many different medications both to control my stomach & bowel but also my depression and insomnia. Then there are the medications for the side effects of the essential medications.

My GP suggested walking to aide the digestive problems but that soon stopped as I get travel sickness, yes travel sickness, while walking!!! I also get very car sick. So like so many of you I am almost completely house bound.

Lately my pain is increasing and I am struggling to tolerate the small amount of food that I can eat. It looks like I am heading towards a PEG in my intestines for nutrition. I am no longer able to stand for very long and I have to shower as quickly as possible before my whole body starts to shake and I fall over! My husband now does all the housework as I physically cannot do it.

I am now struggling to keep my medications down. I have no idea where things are going to go from here but I can guarantee (judging by history) that things are only going to get WORSE!!!

Does anyone have anything like my "stomach stroke" that we can compare notes on? I would love to hear from anyone with experience of a good PEG as well to find out more about that.

Thanks Dawn


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## annie7 (Aug 16, 2002)

so very sorry for all your complicated problems and suffering.

hopefully you'll get some responses here on the board from people in similar situations.

did your doctor mention the possibility that you could have gastroparesis (delayed gastric emptying) . you can be tested for that.

you might want to take a look the AGMD motility disorders support board (Inspire). there are a lot of people on there with serious motility disorders such as gastroparesis and other problems as well as lots of people with PEGs, it's a very active, helpful and supportive board.

https://www.inspire.com/groups/agmd-gi-motility/?ref=as&asat=473897824

good luck with everything, i do hope that somehow you can find some relief. take good care.


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