I have recently been diagnosed by my rheumatologist with HEDS . I have quite a few things going on , one is stomach problems.
I know EDS can affect the stomach.
For at least 2 years I've been having problems with going to the toilet, I put it down to pain medication and the huge amount of antibiotics I had after spine surgery and getting a sepsis infection.
I've tried probiotics, fibre gel , cosmacol and lactose but now the only thing to get anything moving is dulcolax and I have to take 3 at once as 2 doesn't work.
But then all I get is watery diarrhoea.
I can go a week or more with nothing until I take laxatives.
I paid to see a gastroenterologist about 6 weeks ago as the wait time was 24 weeks!
He has ordered a colonoscopy and ct scan which I've had but not the results yet.
He gave me prucalopride but this didnt work at all.
I now have linaclotide which has helped a bit but I'm still not going to the toilet much.
He mentioned its possibly a slow transit thing.
It feels like it's not moving through I'm bloated all the time and my appetite has gone and I only eat small amounts now so I'm not more uncomfortable.
I wake up with stomach pain and bloated which seems odd.
I'm not sure what else I can do I'd linaclotide doesn't work as I think that's what they use for slow transit bowel problems.
Any help would be appreciated.