www.incontinentsupport.org

You have patiently read my complaints about gastroparesis (intestinal paralysis), and for that I thank you. When I should have been working today, I was instead browsing the Internet. I discovered that connective tissue diseases, such as Marfan's syndrome, often include gastroparesis. This explains my GI difficulties, including fecal incontinence. Knowing the reason is not a cure, nor does it make coping easier, but it does make my life easier. At this point, I'll gladly accept every little insight that comes my way.

It's nice to KNOW, that's for sure... I am still not there for reasons that have been confirmed as to date... I can deal with that! Puffy

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Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995

I know a fair few people who have both Ehler danlos syndrome and gastroparesis. Faulty collagen increases the chances of it.

Ehlers Danlos is a sibling to Marfan. They come from one ugly family, all of them.

Is it Marfan you have? I'm surprised they didn't mention to you that it can cause it. I know Ehler danlos can also cause bladder problems too.

In spite of an intensive, and partially experimental workup, for which I had to sign several waivers, including interviews with several doctors, medical students and interns too numerous to remember, nobody ever told me that Marfan's syndrome could cause or be associated with gastrointestinal issues of any sort. They told me that Marfan had probably caused the fractured vertebrae and compressed discs which cause bladder incontinence, and said that I needed to be aware that bowel incontinence could begin at any time, but gastroparesis? Nothing. In many ways, gastroparesis is more difficult to manage than incontinence. First, the GP support sites do not permit conversations; you post once and that is it. And, even with medicine, I sometimes vomit in my sleep, and do not remember doing it, except that I have smelly, undigested food on my pillow in the morning, or I soil myself during the night. Then there's the issue of managing medications and diet. It is a complex task; I'm not very good at it, even after all these years. I know, the big holiday feasts are supposed to be times of happiness; however, GP can really ruin a big, jolly family meal, so I smile and eat as carefully as I can, and explain that I didn't skip Aunt Edna's apple pie because I was trying to insult her. My wife makes a cranberry relish that is to die for, and, if I eat even a little, it promises to do just that.

Thanks for letting me vent. If I said these things to my family and friends, I would soon become tiresome. This is different; I need it, and I thank you.

Patrick:

Feel free to vent, we are all a family here, even if at times we happen to have an accident. hehe
At least we can all "relate" to each other here. lol
I know having fecal incontinence can be real shitty at times, and definitely not fun.
I have some fecal incontinence, but luckily its minimal at this time.
Altho the Dr's have told me that will probably change over time, and not for the better.
But life goes on and the sun WILL rise in the morning.

I do hope that they get your problems under controll soon.
Schoppy