Gastroparesis and Ehlers-Danlos Syndrome

I'm sorry for not posting sooner with an update but you know what it's like! I've had a really rough week and have been trying to sleep through it all for a while. It's a long story but I'll keep it short ! It was my daughters birthday on Monday...which meant that there was an evil chocolate cake in the house...yep...on Tuesday, I caved... and now I'm in a right old pickle! My dietitian rang me on Wednesday to see how I was getting on and was more than a little bit worried when I told her the situation. I had already switched the feed off because my abdominal pain was through the roof so she told me to leave it switched off overnight and to start again when I felt well enough. I had my appointment with the surgeon about my gallbladder on Thursday which was lousy timing but I really needed to go so I went armed with sick bags and stemitil! My appointment went really well and he said that he does think that the gallbladder is playing a role in some of m...

Hey guys, I hope you like the videos... I messed up a few times but hey, at least I've mastered video uploads! Im going to try and do some more soon but wanted to know what kind of information you want me to talk about. Let me know if there is anything you feel is missing from my blog which you might want me to include. I am trying to make it a little more user friendly but blogging has its limits and until I get my website up and running there isn't a great deal I can do to change the layout so please bear with me! I have my surgical review coming up on Thursday so I will update my diary properly when I know more. It feels like I have been really busy this week but when I sit here and think about what I have done I realise that I have actually done very little. I have been going over things in my mind again which is driving me to distraction. Something happened recently which stirred up lots of old feelings from when I first started on my health journey and I have strug...

Hey guys here is my story so far, I am going to do a series of videos over the next few weeks to support the information that is already on here. I am trying to build a website but as many of you already know...Im a bit technophobic but at least Ive finally figured out youtube lol. If anyone has any questions or topics they would like me to talk about please feel free to let me know...just leave a comment or message me on Facebook or Twitter @helpmeminx

I went to see my dietitian yesterday. It was as frustrating as ever grrr. I find her so pushy sometimes! I understand that I'm not getting enough calories right now...we all know that, but that is because I can't TOLERATE any more. I have pushed and pushed this least 2 weeks to increase my feed rate, with varying degrees of success and failure. I really am doing everything I can to improve the situation for myself but my dietitian doesn't seem to see that. She just keeps pushing and pushing and pushing. I explained to her that I was spending much of my time flushing my NJ tube with tiny amounts of water because I can't tolerate bigger flushes. Her suggestion was to give bigger flushes so I don't have to do it so often...yep thanks for that little gem, I can't be trying hard enough eh! That really made me quite cross because if that was an option I would be doing it! I asked about the hydra bag but that was dismissed instantly and then I asked if I could have the...

Hey guys, Im posting because I got my confirmation for my appointment in Manchester today. It is for the 16th of April which sounds like a million miles away to me at the moment. I can't even begin to explain how drained I feel and I just know its only going to get worse which is the hardest part to take. I'm spending much of my time giving flushes down my NJ tube because I'm not tolerating enough feed to keep my fluids up, meaning I have to do 10ml water flushes throughout the day. I'm going to ask my dietitian if I can get some hydra bags (water) so I can switch to water for a few hours a day...I think anything is worth a try at the moment because quite honestly I'm not getting enough of anything right now anyway so I might as well try it and see if I can get some more fluid on board. I did also think that it might be worth trying the basic feed again to see if I can tolerate higher volumes of that, it's less calories but if I can cope with a higher volume the...

I got my letter from my GI yesterday. It's funny how, you can hear someone say something and think you are coping with it, but when it is written in words it's so much harder to take? I don't know why that is but for me having it written down makes it real...if that makes sense? I'm not posting this for mild entertainment, please remember that this is my life and not a soap opera! It takes courage to bear your soul to the world and share these intimate thoughts and feelings but I do so to help the thousands of other Gastroparesis patients who are battling this horrible condition. By sharing our experiences we can learn together and hopefully learn to live with the challenges that face us. So here it is: I reviewed xxx today. I am sad to say that the Nasojejunal tube feeding has not worked. She is only managing 17mls an hour and is feeling quite uncomfortable with this and sometimes in severe pain. She continues to loose weight and this is really quite worrying. She i...