Gastroparesis and Ehlers-Danlos Syndrome

I haven't been posting regularly for a while and keep apologising for the lack of activity here.... Im not apologising for anything anymore. Life is a roller coaster and that's that lol. One of the top ten questions I get from people about my condition, is, "How do you cope with that?" until recently I have found this question near on impossible to answer. What do you mean? I'm not coping, I'm not dealing with it and I just want a way out. I never understood the question... I just wake up everyday and put one foot in front of the other...sometimes I walk and sometimes I fall. That's just the way it is. I have no choice in the matter really. So COPING never really entered my head. However, the last couple of months have been a turning point for me. My last clinic appointment left me in tears and all kinds of emotional torment. I was told that I would probably be on TPN for the rest of my life... wowzer, I had never dared to think like that before. No...

G.I.F.T: Do you write poems? : Hi everyone! After receiving great feedback on facebook about poems, I thought it would be a great idea to get everyone to send in their ...

To all my friends and family, I want to thank you for being there for me. For keeping my spirits up in the hardest of times and for believing in me from the start.  Our relationships have been tested to the very extremes yet we still stand side by side in battle, waiting for times to change. I promise you faithfully that one day, we will win this fight..... how can I be so sure? Because with friends and family to help you through, you don't need a miracle, you already have one! I thank you all from the bottom of my heart for sticking it out with me and never loosing hope x Never Ever Give Up! NEGU x Dear Gastroparesis, Screw You! Nat x

I have not been writing much, in fact I haven't been doing much of anything lately... you know when I start writing poems...its not going well lol. I have been having a mini war with myself over medication and just generally sulking about the whole situation! At my last consultation we decided to remove my nj tube after starting on TPN in the hope that I wouldn't need them now that I'm not using my digestive system for feeding. It didn't take long to realise that I really needed some of those meds but by then it was too late and the tube was gone. So I have spent weeks trying to cope, simply because I didn't want the dreaded tube back! Really all I needed to do was make a phone call or send an email but I wasn't giving in and wanted to make it work. That was pretty dumb and I should have known better but I never learn. I do everything the hard way so why would this be any different lol. So, of course by taking that approach, I just made everything worse for...

We have recently launched our new blog! If you haven't seen it yet take a look at  www.giftukblog.blogspot.com  and see what we have been up to! We are just starting out so don't have a great deal of funding but soon hope to get our website off the ground to provide a more interactive platform. In the mean time, I hope you like it....show your support and subscribe, tweet, 'like' and share our page! You can also visit our support group at  www.facebook.com/groups/GIFTuk  for patient led advice and support.

You sit and you wait the clock is ticking What's the deal…the doctor is late! You think to yourself its not so bad in fact he really thinks I'm mad! You sit and you wait now feeling too ill when he makes the suggestion lets try one more pill. You nod your head  and go with the flow after all he's the one in the know. You sit and you wait getting thinner and thinner come on doc I just want some dinner. Your life soon revolves  around constant drip rates and you just can't remember the last time you ate. Time is a healer but you're not so sure after all they say there is no cure. So you learn to live with the hand you are dealt and hide from the world the way that blow felt.

I see you there as you stand and stare, my body is broken, i'll lay it out bare. Look into my eyes, they have seen more than many. Hopes and dreams I cant have any. I see you there as you stand and stare, my spirit is broken, i'll lay it out bare. Look into my eyes, I'm deep down inside, here in my war zone, theres no place to hide. I see you there as you stand and stare, Don't pity me, dont even dare! Look behind my eyes Can't you see I'm still there. I fight the good fight all day and all night to awaken the spirit and live for the right the right to be seen from the shadows of lights. Look beyond the battle look beyond the war Life is worth living of that I am sure.

I realise I was a bit vague in my last post but this entry deserves a little time to write without distraction. I commenced TPN (intraveous feeding) on the 12th June and since then I have been testing my feet in this new world. In just under 3 months, I have gained back 11kg and for the first time since my journey started over two and a half years ago,  I'm a stable healthy weight. Initially, when TPN was mentioned as the next step for me... I panicked! Like anyone would I guess. I saw it as a sign of things getting worse and found it hard to stay positive during that time. Then, things got so bad I stopped looking at it as "as sign of getting worse"... there was no worse anymore... I felt so ill I didn't care what any of it meant as long as it kept me alive. I realised that this was the only thing that would stop me from starving! (Yes I know thats the purpose of it lol. It just took me a while to realise that!) Accepting it was only half the battle though. Fi...

I want to apologise to all my regular readers for not updating my blog for so long! Im going to write a full run down soon and explain everything in detail, but I can tell you.....I'm finally at a HEALTHY weight! I'm not dehydrated all the time and I no longer feel that I'm just wasting away!   I'm still learning to live within the limitations of the way things are and sometimes find it hard to pace myself and not overdo it! My mind is strong but the body has other ideas lol. I have been working really hard on getting my new charity off the ground so blogging has had to take a back seat while I focus on this. I have called it GIFT... Gastroparesis & Intestinal Failure Trust. It has been my goal for so long, and now it is finally coming together! There is a full run down of our objectives on our facebook page. You can find the official charity page at: GIFTuk Official page  if anyone would like to get involved and make a difference please email me at giftukawa...

Hi guys! Sorry I haven't been updating as regularly as usual! I'm stuck with the iPad while I'm in hospital and it's not so easy to post on here! I'm almost ready to come home and my discharge is arranged for Thursday (12th). I had three training sessions for self administration of the TPN. One for connecting, one for disconnecting and one for dressing changes. It was all pretty straight forward because I have my nurse training to fall back on, so after showing him that I could do it safely we sat and chatted about festivals and camper vans lol. I have been setting everything up myself since week one so there are no really concerns about that! I had my NJ tube replaced on the Monday, following my last post but it did not go very well. I spoke to the clinician who was placing it prior to them starting and explained that I was more than used to the procedure after having several already. I also told him that 4mg of medazolam is what they usually use and that wor...

Time to finish that post I started! Sorry I've left it so long I'm sure you all understand though ; ) I left off last time having just met the team who are caring for me and arrangements were being made for me to get my Hickman line so they could start my TPN. As mentioned before, they agreed to arrange for me to have sedation for my line insertion because local anaesthetic doesn't work for me (because of my EDS). They initially thought I would have to wait a while and they had planned to place a temporary line while I waited. As per usual the plan changed again and they managed to get me a space on a list at another hospital in Leeds, (Leeds general infirmary) meaning I didn't need the temporary line after all! My NJ tube had blocked the night before so it was perfect timing considering I have no other route for meds etc. Wednesday morning came round and everything went as planned. The patient transport arrived on time to take me over there and they were expecting ...

Well, what a week it has been! As usual nothing is straight forward and plans have been changed again. Following on from my last rant, I finally made it to hospital on Friday after my mum staged a sit in at my GPs office lol. We had spoken to my GP on Wednesday and asked him to contact the hospital following the advice of my consultants secretary. He was supposed to ring them and let them know what the situation was with my feed rates etc so they could prioritise my admission. Unfortunately this particular GP still lives in the dark ages, before telephones and emails and decided to post a letter marked URGENT instead....yes really! By this time I was really at the end of my limit, I hadn't had any feed at all for 10 days and only 240ml of water per day through my NJ tube. I might be used to starvation but everyone has a limit and I reached mine quite some time ago. I really couldnt cope with it anymore and literally felt like I was just going to fade away. So as I said, my mu...

AAAARRRRGGGGG! This is going to be one big rant, I'm a calm person really I promise ; ) Lots of you already know that I was due to get my Hickman line on Tuesday, so by rights I should be getting some food by now. But remember...this is me, queen of the cock-ups, disaster magnet extrodinaire... or is it just that I'm so laid back that people think "its ok she won't mind"?  Which ever it is... I DO mind! As mentioned in my earlier post, I was due to be admitted on Sunday ready to get a hickman line on Tuesday. Unfortunately there wasn't a bed available on Sunday.  Not to worry, just a quick change of plan....go down to my GPs office to get the MRSA screening done and all will be ready for Tuesday.  After all, I'm "DEFINATELY DEFINATELY" on the list!  So I skip my regular IV day which was much needed, to head down to the GP to get the screening done, expecting that it would be ok because I would be getting my fluids on Tuesda...

Where to start? Well it's been a while since I sat and spent any time writing and as usual lots has been going on. Last time I wrote I had just started taking Pregabalin for pain and Refaximine for bacterial overgrowth which had been recommended by the team at Manchester. I'm now on the full dose of Pregabalin and have finished the course of Refaximine yet I'm still having big issues with pain and feeding. The IV therapy has been keeping me afloat for the last few weeks which has been helping me manage while I wait for a better long term solution. I have rubbish veins though so it has meant repeated jabs into veins that are already scarred from overuse. They are really good at the unit though and they have been keeping a close eye on me. I wasn't so good when I went last week and they had a Dr up quick sharp to come and see me. To put it politely, I hadn't "been" for 6 weeks straight. I had spoken to my gp about it but their opinion was that I wasn...

Hey everyone, I haven't forgotten you, I've just been busy trying to get myself back on top! I've had several appointments since I last wrote so I'll try and work through things as best I can. I have a bit of a memory loss issue at the moment so we'll see how it goes ha ha. I didn't get my NJ tube on the day we were expecting. We went for the initial appointment only to be told that they had no idea about the arrangement that had been organised on my discharge from hospital! So that was a waste of effort! It wasn't a completely wasted journey because I had my appointment with the pacer nurse in the afternoon but it was a VERY long day. I've had the voltage increased again so its at absolute max now. The rep said that they can still play around with the timings of it for me but I have to admit that I have almost given up on it working at all. Anyhow, we got an apology for the mix up and I did eventually get my new tube the following week. It was ...

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 ...

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...

Hi everyone, Lots has been happening over the last month and its hard to remember everything but heres a run down of where I'm at right now. The tube feeding isn't working...by that i mean my body isn't tolerating it. We initially thought that my recent pain issues were related to my surgical tube but after having that removed and having a naso jejunal tube placed, I'm still getting pain. So we are left with no option but to go to Manchester for assessment for TPN (IV feeding). This is not a good place to be and I'm finding it hard to accept. I'm really down about it all and just wish that for once something would go my way! I'm waiting for an appointment to go over there but my GI said it could take up to 6 weeks. It will give me time to get used to the idea but it also means that I'm going to be in a much worse place when I do finally get there. I am back down to 45kg, not my lowest of 42 but I'm fast approaching that now. I still have my naso ...

Hey guys, finally I think I'm in the right frame of mind to put some of my thoughts and feelings into words. I need to get myself together and sort this mess out! My question is, how do you really express how you feel when you don't understand yourself? That's been my problem this week. My usual course of action when faced with a new Gastroparesis issue is to read...read and read some more. It helps me to understand my body and what processes are going on in there to make me feel so utterly rubbish. However, I have found recently that I can't bear to read one more article about the benefits of gastric pacers and domperidone. If they were really that good we would all be doing cartwheels and eating chocolate cake! In reality, it doesn't work for everyone...but know one knows why. This becomes a big issue, especially when explaining your illness to someone new. Well why isn't all that treatment you're getting working? Why can't you just eat more? Why d...

I'm feeling pretty miserable at the moment and don't feel that I should really put it into words right now. I'm trying to stay positive but it's impossible to be positive all the time. Apologies if I'm late in replying to any emails, I'll get back to you on my better days xxx

Hey guys, Just posting to let you all know that my naso jejunal feeing tube is up and running. It was all done early this morning but it's taken all day for me to get up onto a ward and be admitted fully. I don't really know what the plan is yet but will be seeing my GI tomorrow. I'll be sure to fill you all in on the details tomorrow. We have just re- started the feed this evening at 10mls an hour with a view to increasing it by 5mls an hour per day after that. I'm already feeling uncomfortable with it as I haven't been to the loo in weeks so everything is tight and sore. I'll be so glad when they finally pull out my surgical jejunostomy tomorrow! Maybe that will help x Here's hoping!

Hi guys just thought I'd stop by and scribble a bit before tomorrow. I'm going back to hospital in the morning for removal of my jejunostomy tube and placement of a new nasal jejunal tube. We are testing to see if the pain settles down with the surgical tube out of the way. If things go well and I tolerate the feed I will be having a PEG tube with jejunal extension. I'm not sure what the plan is yet, I'm sure I'll find out tomorrow. I'll try and post tomorrow evening to fill you in on the details. I've not been too good this week pain wise and will be so relieved when this tube comes out! Here's hoping this new plan works better xxx keep your fingers and toes crossed for me xxx

Hello! Guess who's home!!!!!!!!!! What a week it's been. I've been on a real roller coaster ride and my head is spinning a little. Forgive me if this post is a little erratic but so much has happened my brain hasn't taken it all in. I suppose I should start with where I left off on Wednesday. So...Right, the CT scan results came in on Thursday, it was my GI's surgical reg who came to speak to me. I was relieved that it wasn't Mr Ego because I feel I can talk to my GI team more freely, they are much more approachable...and dare I say human lol. The result of the scan was clear! So I'm left in the position that, yes, I don't need surgery...but also, what do we do now? It is looking more and more likely that I now have visceral hypersensitivity in my small bowel too. Which is not so easily overcome. The adjustment I had to my pacer earlier this week has not made any difference yet but it can take months to start working effectively. As promised the specia...

Where do I start? Ok...Last wednesday night I was in severe pain in the area around my jejunal feeding tube. I spent most of the early hours of the morning glued to the computer, desperately trying to ignore the pain. It got to around 5am and after full doses of tramadol and oramorph, the pain was still incredibly intense. Those of you who know me also know how much I hate A & E but in this instance I really had no choice but to go. I was downstairs at home and my hubby was sleeping soundly upstairs so I had to ring the house phone to wake him up because I simply couldn't move by that point. Luckily the children were staying at their grandparents for the night so we didn't have to worry about arranging a baby sitter. Unfortunately my local hospitals are a total waste of time so I had to tolerate the long drive back to Durham where my GI is based. It was the longest car journey of my life, I was in so much pain by this point that I thought my intestines were going to bur...

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...