Dysmotility please help

Blossom223

Hello,

I have hEDS, and M.E. I know both of these conditions can cause dysmotilitiy. And that hEDS, can even cause paralysis of GI organs. 

For months I haven’t been able to eat more than tiny snacks a day because of sickness, bloating, fullness, and pain. I also haven’t been able to go to the toilet for 2-3 weeks at a time, and even then it is a small amount brought upon by laxatives. For the past month or so it has gotten extremely unbearable and I am barely eating or drinking anything. I have lost almost a stone in this time. I am constantly impacted and doctors will not do anything but give me Movicol which is something I know does not work for me. I am not being offered any other treatment. 111 told me to go to A&E straight away last week because the pain was so severe, and A&E wouldn’t do anything because in their words i “wasn’t about to die”. I have tried to get help from my GP, and GI too and neither will help. Please help me I am desperate. I have tried everything. The underlying cause of these issues isn’t being looked at, I have searched none stop for days to try and find someone who will help me and I can’t. I have no one to get treatment from. The only time they will help is if I get malnourished, severely dehydrated or if I get a bowel obstruction. I shouldn’t have to wait until I’m very ill to get help.

CaderMac

Hello @Blossom223
I'm sorry to hear that you are feeling so sorry and feeling so unsupported. 

I know from personal experience that sometimes it just takes time and several visits to your GP for them to really get to the root of the problems. 

For now I have found this website which may offer some you some comfort or advice.

Hopefully there are other users on the community who will be able to offer you some more advice or support. 

Cader x 

Sam_Alumni

hI @Blossom223
Im so sorry to hear you are having a rough time  

Are you under a gastro consultant? Can you ask your GP for a referral?