Gastroparesis and Ehlers-Danlos Syndrome

Oooh it's been a rough ride since last time I wrote my diary. Where to start? Well.... I have been getting a lot of pain in my abdomen where my feeding jejunostomy is placed. On Friday (20th Jan) I visited my GP about the pain once again, because it was getting more severe as the days went on. I was unlucky because I ended up having to see a locum who didn't know anything about me. He prodded on poked my tummy, which made the pain even worse. Then he said, he had no idea what to do for me and I should phone my GI when I got home to try and get in to see him sooner than planned. I knew I had to get help soon because I was in constant pain all over my abdomen by the time I got home. I rang my GI's secretary, who was lovely as usual and told me she would ask him to ring me back as soon as possible. He called me later that afternoon. After explaining the problem he said that he could arrange to see me on Monday because he would be able to organise and co-ordinate everyth...

Please click here for  #Part 1  and  #Part 2 Testing...testing...testing... There are a wide range of tests that can be done to diagnose Gastroparesis but you may need to persevere to get them. Not all hospitals have the necessary equipment to perform the tests so expect to have to travel a bit. When you first start out on the gastroparesis journey you will usually be faced with a host of tests that eliminate any organic causes first. The tests you have will depend on a combination of your symptoms and your consultants clinical judgement. This is one of the hardest stages for patients suffering from gastroparesis because it can be a lengthy process and the standard ultrasounds and abdominal tests are not specific enough. In most cases they come back clear because they are looking for growths and abnormalities and not the overall functioning of those organs. Initially, most people are referred to a surgical gastroenterologist due to the severity of the pai...

Hey guys, sorry for not posting much recently, I have been working on connecting some of my groups and pages to my blog so that I can tidy everything up a little. I decided to write a full account of my story but as I started writing I realised it was going to take me much more than one session at the computer. So that's what I'm busy doing for now in case you were wondering why I'm so quiet at the moment. I have not slept much recently and it's not easy to write well when you have brain fog! So it's taking longer than expected and is looking more like a book than a blog but hey I'll finish it some day soon x