Gastroparesis and Ehlers-Danlos Syndrome

I know I left Part 2 somewhat in the middle of the consultation, so I'll try and start where I left off and see where it goes. Obviously there are inevitably going to be more "parts" to this series the deeper we go, so bear with me I WILL get it all down on here eventually. To sum up the last post in a few words, the diagnostic term for my neck issues is, Cranio-Cervical Instability. Naturally our next question was, "What can we do about it and what does it mean for the future?" This is where I struggle to explain. When it comes to brain/spinal surgery the decision process is not so cut and dry! So, the only way to actually fix the instability in my head and neck and prevent any further neurological damage would be to fuse my skull and top two vertebrae together using metal rods (permanently immobilising my skull C1 & C2) and remove the excess tissue that is causing the brainstem compression. Obviously this is a very risky procedure and not one...

Click here for #Part 1 Most of you will already know through my blog, I'm not keen on surgeons ( to put it mildly ) so that key moment when I first meet a new one always feels like a very tense and anxious exchange. Years of plodding through the various health systems has unfortunately made me very cynical so it takes a lot to win me over these days. ... However,  Dr G had a very open and friendly manner about him which was instantly reassuring, we felt like equals from the offset so any tension we had felt beforehand quickly disappeared. He managed to hit my top two priorities on the head in pretty much the first sentence! He explained that he had been very interested in my unusual presentation and was keen to understand more , which is always difficult through email conversation. (not exactly a demanding list but surprisingly hard to find, especially among the surgical fraternity!) Prior to the appointment I had submitted a series of questionnaires including; a CCI quest...

As most of you here know, I've been struggling with gastroparesis for the last 7 years. It's a very long story but this led to the diagnosis of Ehlers-Danlos syndrome. For those new to my blog... Eds is a genetic condition which makes the collagen in my body weaker and stretch more than it should. I was told as soon as I got the diagnosis, that Eds was the probable cause of my gastroparesis. No one explained why, mainly because the link is not fully understood, even in today's world where we can grow tissue in labs and print 3D parts from a computer! I've spent so many of those years in between, trying to find that elusive link and believe me when I say...I've read about every weird and wonderful theory known to man, every useless trial, and every obscure symptom. I've spoken to others with the same issues and heard their stories of how it all began. From testing new drugs, surgery and some rather suspicious looking electrical devices, believe me when I say...

I know I've rather slowed down with the writing. I always have plenty to say but sometimes I need to keep things to myself a bit. However I do realise that not writing means that you guys miss out on all my wonderfully happy stories! So I thought I would top you up with the joys of my life and all the little challenges it brings. Today I'm merely ranting out loud but I promise to post a more personal blog soon.... I've been thinking a lot lately about other peoples perception of what my life entails. Obviously not those who actually take the time to find out, those who send me messages because they've not heard from me in a while...you guys are fine! No, I'm talking about those who choose to judge from a thousand paces purely on the fact that you have put a little make-up on! Just want to get this out there... YOU GUYS SUCK! Big time! What is it with this obsession that sick people must be: a) miserable   (sick people obviously NEVER smile) b) pale   (anyt...

RANT ALERT! Fuming doesn't even come close to how I feel right now. Life has been SO hard lately and getting all this down on "paper" in a coherent way might be a bit of a challenge but here goes! Rewind back to November (2014) my jej tube started to misbehave. It started with a niggle and what we thought was granulation tissue around the stoma. So I told my GI and went to the gp for some silver nitrate to burn off any troublesome tissue (nice huh). The granulation disappeared but the pain was getting worse and now it was weeping all the time too (infection was ruled out straight away). So, step two was to ring my team and get someone with experience to look at the tube and find out what was going on. December, I get an "urgent" appointment to see the surgeon who initially placed the tube for me, by which time I was having to take the dreaded oramorph to be able to get to the appointments! My mum and I attended the appointment together like we always do...

What is it really like to live with a  debilitating condition that may never go away? In the beginning, its all about survival, just trying to get through the endless testing, trying to find the answer to your problems. It is such a difficult time that you barely notice the months slipping by that you will never get back. You spend most of your time trying to find a treatment that will help, looking for that illusive piece of the jigsaw that has been missing your entire life. You don't stop to think, what if? It doesn't even register on the radar…there must be something, someone else might know more, maybe I can work it out myself?  So you loose yourself in finding the answer, switch off from what's happening and focus on the one shred of hope that you have. All the time, tick tock, tick tock, the months go by. Finally you find someone who cares, a special dr or nurse who takes the time to listen and it changes everything….for a while. It gives you comfort, new...

It's been so long since I wrote here yet it amazes me how many people still read my ramblings. When I first started writing I did it to find others like me and help along the way wherever I could. I really can't believe how much it has changed my life. I was never the brightest kid in school, nor the funniest, I hid away in groups and quite honestly people rarely remembered me at all. Probably because I never wanted to be noticed, didn't want to stand out too much. My teachers always said I had potential but I rarely reached it! Not because I was naughty… simply because I didn't have the courage to make myself heard. The last few years of living with a chronic illness has been a huge learning curve and I've had to do a lot of soul searching.  During that time Ive realised that all my life I felt like an "underachiever" for lack of a better word. Always feeling that I had let others down and in turn let myself down the most. Maybe it stems from my abse...

Probably the worst question in the world…or is it? It's probing and intrusive and commonly people don't really want to know unless the answer is positive. Those who choose to answer in a negative context will often be left wishing they had just said, "I'm ok thanks". Gradually over time you find yourself saying your fine when quite clearly you're not. Why is that so? What is it about discussing how we feel, that makes everyone so uncomfortable? I'm not apportioning blame on anyone, we all do it, even if we don't intend to. Is it a "british thing" or is it the same in every culture? I say this because my brother used to have a friend who's parents always asked him what his bowel habits were like as it was their culture to do so. Of course he found this pretty weird at first but clearly it is similar to asking "how do you feel" and is similarly intrusive to people unfamiliar with the culture. What is it that makes us not wa...

I know I haven't posted in a while but I have been so busy trying to be wonder woman I really haven't had the energy left for it. That sounds really exciting but in all honesty wearing a pair of spandex pants is probably the closest I'm ever going to get!… Not that I actually own any spandex either, just to be clear ; ) So what have I been doing? Well, following on from part 1,2,3,4,……blaughgghghgugh I decided not to write part 5! I have a half finished version of it but I don't intend to post it. So much has happened since then that I just don't want to look back. I could list the catastrophe's in bullet points for you but that's not really me and I won't let any of this define who I am as a person! It may not define who I am but it is always going to be a big part of my life, and for that reason I've had to re-build life around it rather than brush it under the carpet. I don't always get it right and there are so many days when I still w...

I have been neglecting my blog recently and I apologise if I caused anyone to worry. I have hit a brick wall at the moment and writing about gastroparesis and how I feel about it etc etc has been an impossible task. I'm finding it hard to concentrate on anything lately. I can't seem to focus or even gather my thoughts. Then I spend forever thinking about what I need to be doing...and then not doing that either! I feel kind of lost but I don't know why. I thought a break from all of it would help but it seems that once I stopped writing... it all just got harder. I think I have been bottling things up a little and now if I pop the cork its going to end in a meltdown.... if that's not whats happening already!  I often put on a brave face and tell people I'm ok when I'm not, but when I try telling myself the same thing it leads to this build up of emotions that I don't really know how to handle. I am finding that the longer this goes on the more alone ...

I'll bet most of the people reading this post will know where I am coming from with this one! How many times since diagnosis has someone asked you, "Well what DO you eat?" For me the answer is simple, "nothing" is my reply. This is quickly followed by, "Well, you MUST eat something!" I have lost count of the times this has been said to me. I came to the conclusion that people react this way because they simply can't imagine what that might be like, so I thought I would try and explain. No, We have not lost the ability to chew, swallow and ingest food. There are no obvious physical changes such a lumps bumps or obstructions. You can't see gastroparesis by simply taking a picture of our insides. But that doesn't mean it isn't there! We have to learn to override one of the the strongest natural urges of the human body. You don't just eat with your mouth, you smell it you see it... you want it! Living with gastroparesis mea...

Coming to terms with chronic illness is the hardest battle we face. Some days you feel like you could conquer the world and the following day you just want it to swallow you up! I go through cycles of emotions that I didn't even know existed before, from optimism and hope to total despair. Part of the "acceptance" process is acknowledging these feelings and understanding where they come from. I have spent so many hours laying in bed wishing that things were different. In the beginning... it consumed me... until I realised that I was allowing this illness to beat me both mentally and physically. Then, I began to look at it differently. I can't change what has happened to my body, I can't force it to work as it should... but I CAN choose the way I deal with it. Learning to live with chronic illness is like shovelling snow when it's snowing... but it never stops. Our emotions are just as relentless so you need to learn to pace yourself and allow time to ma...

Oh my goodness! Where do I start to explain my crazy roller coaster ride? Quite honestly, my head is still not quite in this world but I'm getting there slowly but surely. It's been three weeks since I came in for my "minor" surgery and I have only just started to turn the corner. My physician came to see me shortly after my last post and we finally discovered what has been making me so ill. She didn't want to dismiss the possibility that there was something sinister going on  since my blood tests indicated that something was going on with my liver. So, I headed off to ultrasound to get everything checked over again. Usually this is a safe and painless test, however, when you have just had surgery....it's is definitely NOT painless or easy at all! Even laying flat on the bed was torture, never mind having someone rubbing and pressing on my surgical wounds! She must have checked just about every organ while I was there, from my liver and kidneys to my sple...

I'm not up to writing a long post right now but I wanted to update everyone because my inbox is full lol. I had surgery last Wednesday (17th) to have my gallbladder &pacemaker removed and to get a new jejunostomy tube for my medication. I was supposed to be here for 2 days but as you can tell, I'm still here 11 days later with no sign of being anywhere near ready to go home. The surgery itself went ok and a subsequent CT scan confirmed that structurally everything is ok. However, since the surgery I have been vomiting. Not just a little, I'm talking anything up to 3 litres in 24 hrs. They have no idea why this has happened or how to make it stop. I'm on 3 different types of anti-sickness meds yet it just won't stop. Sleep is becoming a big issue as I'm up most of the night with it. Of course lack of sleep with the added nausea and vomiting have put me on a real downer. they are finding it hard to get enough fluid in to maintain hydration because my TP...

Hi guys, Just a quick post to update you on the progress of the Gastroparesis charity I started. Many of my Facebook and twitter followers get regular updates on what we have been doing but for those new to the page here's where to find us and how you can help. The charity is called GIFT standing for : Gastroparesis &Intestinal Failure Trust You can find us at:  www.giftukblog.blogspot.com  please take a look at our fundraising page where you can earn crucial donations for GIFT without it costing you a penny extra by registering with Easyfundraising (direct link available). The support group currently runs through Facebook and can be found at:  www.facebook.com/groups/giftuk And finally our awareness campaign can be found at:  www.facebook.com/giftuk We have had some excellent feedback from our existing group members and hope to expand the support network over the coming year. We are currently building a database of members and invite anyone in the U...

Time for an update I think! I worry that my blog sometimes sounds really repetitive, not much changes around here I'm afraid so more of the usual coming your way!  The problem with not updating regularly is, that I can't always remember everything thats been happening. My memory is shocking and after 3 years of this and all my appointments etc kind of blur into one these days.  If I'm honest, I feel low. I can't put it down to one thing thats making me feel like this, I just feel completely overwhelmed by everything. Not just health issues but life in general can be a bit of a challenge sometimes. Being ill just complicates things further. There are times in your life when you need to be on top form so you can be strong for others, and that's just how it should be, yet I feel like I'm failing my family because I just can't deal with any more!  I won't bore you with the details of life's craptastic twists and turns but someone put a go...

I don't claim to be a writer by any stretch of the imagination,  but I do have writers block! Maybe it's not a lack of something to say but rather...I'm sick of the subject. I feel like I've come to a bit of a road block and I'm swinging from not wanting to talk about it anymore to wishing I could. I'm not saying I don't have support, I do! I have a great family and a truly amazing best friend, not to mention all the friends I've made through here! However, sometimes those are the people I least want to speak to. Not because I can't...I simply don't want to. It's kind of hard to explain hence "writers block". The only way I can explain it that makes any sense is to compare it to the kitchen bin...don't laugh, I've been thinking about how I can put this into words for ages. Yup...the kitchen bin was the best by far ha ha. Anyhow, if your house is anything like mine then you will know what I'm talking about! The wa...

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 ...