Gastroparesis and Ehlers-Danlos Syndrome

Hi guys, So sorry for not posting when I got home Ive been spending time with the family after missing them while I was away. Sometimes you just have to switch off and focus on whats most important in life. Anyway, I got home on Thursday evening after a ten day stop over. I was admitted for dehydration as a result of my intolerance to jejunal feeding. I am currently getting 10mls an hour through the NJ tube which only amounts to 240mls of fluid per day. I am adding in as many tiny flushes of water as I can with my meds and between doses but again it's nowhere near enough. So my consultant is going to phone my GP to try and get them to organise for me to go and get IV fluids at a local hospital regularly so that I don't get so dehydrated again. In theory this is the best plan anyone has had for ages and it would mean I wouldn't have to spend so much time bouncing in and out of hospital with dehydration. However, based on past experience these kind of plans tend to fall ...

As you can see by yesterdays post, it was so long I didn't have any energy left to write about the current plans and arrangements they are making for my future care. My GI and I disgused Manchesters recommendations and he apologised for giving us a sense of hope that my nutrition could be sorted out quickly. In reality it is likely to be another 6-8 months before we know exactly where we stand. It was a bit of a blow because I thought that the 6 week wait for Manchester was long enough to be suffering like this every day. So I have been really tearful today, all I want is some food! After reviewing the letter he decided to try me on the Pregabalin and Refaximine to begin with while I'm in hospital and see how it goes before adding in any of the others and removing some of my old meds. I have been on them 2 days now, the refaximine is an antibiotic which specifically targets the bad bacteria in the gut and does not have the usual nasty side effects associated with powerful a...

Hi guys, Well I've been in hospital a week now and I finally saw my consultant yesterday. He had just received the letter from Manchester outlining his recommendations for my future treatment and care. We discussed it at length but I'll get back to that in a minute, here's the letter...it's easier to explain by just copying it out for you but I apologise for the jargon... thank you for asking me to see Natalie. I was delighted to meet her today together with her mother who accompanied her. I won't recount the history of the tests which you and xxx have embarked on previously which are outlined clearly in your referral letter for which I am grateful. she is currently maintained on a wide bore NJ tube and feels she is losing weight despite this as she is intolerant of the feed rate due to pain. It is clear that she has some background pains which are mainly related to feed down the left side of her abdomen which she feels is new. It is this pain which limits tog...

Saturday 20th April 2012 well I'm still here and still none the wiser as to what happening.My GI was held up last week so I haven't seen him yet. all the other doctors just take a quick look at my notes and hold their hands up saying "we'll leave it to your consultant" so I'm just sat waiting for Monday to come round so I can find out what they are going to do with me. So far I've been stabbed a total of 13 times for the sake of 4 cannulas....lovely! Then they left me all day with no fluids because no one had written any on my chart...because I don't have a ward team and it got overlooked! so my mum told em straight AGAIN lol. So at least I'm getting fluids again now and also some pabrinex, which has put some more colour in my cheeks! My feed is running at 13mls an hour over 24hrs. They were going to try a more concentrated feed which has 2kcal/ml but they decided against it because it has less fluid content and doesn't contain as much prot...

Hey guys, Just posting a really short one, I'm not well. I have ended up back in hospital again. I don't think I'll be home in any hurry but I'll keep you posted on what's happening. I promise I WILL explain what happened in Manchester yesterday but for now I'm off to sleep, it's too figgin complicated and I have no idea where the next few days will take me so I'm just gonna sleep and hope for the best x

Hi everyone, Firstly I want to say sorry to those of you who can't view the video! I can't get it to work on mobile devices which is REALLY frustrating!!!! Thank you to everyone who has shared it and sent messages, I'm touched by the response and am so grateful for your continued support! I am really trying to help get some action for Gastroparesis here in the UK and am trying to team up with other gastroparesis patients to spread the word and hopefully get some funding for research. I would also like to create a UK branch of G-Pact and have been looking into the possibility of doing this. It looks promising at the moment but due to my own health issues it's going to take me a long time on my own! So I'm looking for volunteers here in the UK to help me to achieve this goal for all of us! If you are at all interested then PLEASE let me know. You can email me at: helpmeminx@yahoo.co.uk or leave a comment below. I have some great fundraising ideas but am always ...