From a Small Surgery to a Big One

This has definitely been one of those weeks where you want to forget... Last Tuesday was meant to be a straight forward day, I had a planned surgery for a new JEC, adhesions taken out and a full thickness biopy taken. However, I should know with my luck that nothing ever goes goes to plan. I said my goodbyes to my amazing mum who stood by my side until I went to night night world, with the last words I heard from the anaesthetists, 'soon you'll feel like you've had a large glass of wine'...If only. Then when the surgeon went in there, my bowel was full of inflammation and had gone rock hard and also had a kink it in. He took all that part out making it quite a major op in the end! He put a new modern JEC in too and left me with lots of scars...any ideas for anything to help scars? I came around in recovery and lets just say...not very comfortable and in huge amounts of pain. But they soon got everything under control. Unfortunately I had to stay in recovery over night so they could keep an eye on me and by the next day I was moved to a ward and was put in my own room. 3 days later and I woke up, tried to freshen up with as little moment as possible, and sat in the chair to look as best as I could for when the doctors came around, despite being in so much pain still, all I wanted was to be at home in my own bed. My plan worked...such pro and by that afternoon I was aloud to go home and rest, because as all that needed to happen was for everything to calm down and heal. This really does show that you really don't know whats around the corner! And all you can do in this situation is to be brave. I must say the nurses all the way through from the anaesthetist nurses to the ward nurses were outstanding. They were so caring and attentive. Because of the wounds should I say, I couldn't sit up or get out of bed etc without help, and they were always there being so attentive. In times like this, I couldn't of asked for anything better, It helped keep me so calm and upbeat at hard times. You know, in this world the little things really do mean a lot and small things really go a long way. I think because I don't have a choice with my illness I really appreciate and admire people's support.

Home Sweet Home.

I have been free from hospital for 3 weeks now and everyday feels just as amazing as the first day I got home! You really do appreciate the little things, especially your very own comfy double bed with a duvet instead of the hospitals rock hard beds, with scabby sheets and blankets! ...no offence NHS! As you can see I couldn't be happier leaving the ward in the picture below!

Its been quite a busy few weeks since I've been home...opps as I'm meant to be taking it steady and doing all that pacing yourself mer-lark. But after laying in a hospital for so many weeks your brain just wants to go crazy when you're out...if only! But as Ed promised, I was whisked down to devon a day after I was home and taken straight to my favourite place in the world, sitting on the beach. There's something so relaxing about breathing in the sea air and listening to pure silence with crisp sea waves! I must admit it was pretty chilly but a few cosy blankets soon sorted that out. Those few days seemed like pure heaven after being in hell. However wherever I go at the moment I have to have my feed with me as I'm on it for 20 hours at the moment. Nonetheless this didn't stop me from not going to the beach now that it has its very own back pack! 

When I was coming to the end of the hospital stay, I probably got the best news I've heard in a very long time. I don't know if you remember, but when I was having botox done to keep the opening of the intestine open, one of the consultants who did the latest one said how bad it was in there, and that I had to have a dilation done. This is when they use a ballon to stretch the muscle open causing it to ripe open...I know, doesn't sound nice. They say you never know how long this way will last, but hopefully longer than having to have the botox down every three months. Since having it done its made eating orally so much easier as I don't get the nausea as badly...yayyy! I then got some pretty exceptional news from the dietitian that the consultants are now happy for me to try purees/semi-solids...yes you did see that right, that does say solids! Even typing that still feels very ser-real! After 2 years of liquids I get the green flag...THIS IS AMAZING! We couldn't believe it. However I'm not aloud anything with fibre in it, onions or garlic, not much red meat or nuts or seeds...ok so that does still sound restricting but who cares after only being aloud nothing! They call it a white diet, white bread, white rice, white pasta etc. Anyone who's reading this who's on a similar thing, ideas would be so valuable! On my way home from hospital we had to stop so that my relatives could got a cheeky well known burger place where I tried my first soggy chip in 2 years...

On a more downbeat hand, this week I got the phone call I've been dreading for a long time. I've got to have surgery next Tuesday...with just 6 days notice. This is the operation for a new JEC, taking the adhesions out, this is the narrowing part of my bowel from scar tissue. Also taking another full thickness biopsy and while they're in there they're going to have a look at this opening into the intestine. I'm already pretty nervous, but this will be a positive as hopefully this should help the pain because as at the moment, my left side is so painful from my JEC. So I've just got to be brave and go with my worries to one side and let them do what they have to do. In times like this all you can do is be a solider and not worry because its got to be done! My one wish for christmas this year is to be stable and be in as little pain as possible... lets keep everything crossed! x 

Week 5...

One week on...and I'm still here at UCL. Yes...it has been 5 weeks, and yes I have most definitely had enough! It really has been a right rollar coster this past week, properly due to the fact I haven't really slept well since I've been here, because hospitals really aren't the quietist of places to sleep! With new patients arriving, nurses chatting and ob's being taken at 2am...Yes that is correct!...2am! Tomorrow I'm going down to have a dilation done, into the opening of my intestine. If you remember I had botox done last week or so, but when they were in there they realised actually how serious it was, and they wanted me to have this done now. This dilation is when they infant a balloon inside, into the opening of the intestine to keep it open. One good thing about this, is that I won't have to have the botox done every three months as this is semi-permeant...yay to less endoscopes!...they're horrid! Hopefully this will help the nausea and enable me to have a little bit more oral too. Also, they finally got the results back from my full thickness biopsy which was taken last year! last year?! Wheres it been all this time...in a pickling jar or something?! Anyway, they have said its comes back abnormal and they want to take another full thickness biopsy when I have the surgery. I was been informed that the surgery will be done within the month hopefully, and it's being done at East Surrey Hospital. This is the surgery for the new JEC, another biopsy and also taking out a part of my intestine where it has narrowed so much from scar tissue causing problems this is called adhesions. I'm really not looking forward to this but it has to be done! But at least it's going to be done at my local hospital. This week really has been tough. Sometimes I feel I'm the only one going through all this, and there's no where to go. But I am lucky enough to have some lovely friends, who have similar conditions to me so we do tend to compare on a regular basis! I would hate to think there are people out there, who is reading this and doesn't have anyone to turn to? Because its a lonely condition and very limiting. But you've got to keep your head up high and keep trooping on, because there is always light at the end of the tunnel. I really do feel that you must set yourself goals, even if its as simple as getting strong enough to go on a little trip somewhere! Because, for me anyway if I know I have something to look forward to it always helps and keeps me motivated too. If you're reading this and want to chat or discuss anything I'm more than happy to listen and help, you can find my email address on my contact details page. This weeks picture below is when my brother Matt and the lovely Kate came to visit me! I hope everyones having a good week! keep smiling x

My days at UCL

One week on here at UCL and I'm just about hanging in there you could say! Every day I'm getting stronger and stronger and I'm not letting anything stop that! Since I last blogged, they've still decided for me not to have TPN (YAY!) and to crack on using the JEC. I'm still waiting to see the surgeons however they've now decided for me to have my op for my new JEC done locally because the waiting list here is 4 weeks as an inpatient...sod that! I should hopefully have the botox for the opening of my intestine done either the end of this week, or the beginning of the next week. I have to have this done every three months now which sucks big time as I hate having endoscopes with a passion. The botox they use is the same botox people have put in their face which I think is quite funny! I had the lignicaine infusion last Friday, and if you haven't read my last blog, this is an infusion which has anaesthetic in it to help chronic pain. The first couple of days I didn't notice anything different but then on the third day I noticed that my background pain had reduced ever so slightly, and when your living with chronic pain every little helps! So I now have to have this done every three months as it doesn't last forever. I've also been seeing the physio who are helping me with my legs. I have terrible de-conditioning muscles due to being in and out of hospitals for the last two years. They are wanting to send me on a three week in patient rehabilitation in London, but for that I need to be strong enough to get through it. So in the mean time, I have to have physio. I cannot wait to be strong again, I truly believe that people take their own bodies for granted, because you really don't now what's around the corner! Ever since I've been poorly I think to myself that I've just got to keep going and that I will be strong again to do the things I love! You've just got to keep your chin up and whatever is thrown in your face you've just got to keep trooping on! There's so many things I want to do now, which maybe before all this happened I wouldn't of ever have thought of doing before? Like people say things happen for a reason, even though this one is a rubbish thing to be put through! I want to travel the world, see whats out there, walk the Great Wall of China, drive down from Seattle to LA, go to Niagara Falls, volunteer in another country to help people's lives, the list goes on and on! I truly believe that in hard situations you must have dreams, dreams that will drive you forward and keep you going, evan if its a small thing as simple as making it to the beach one weekend or seeing a friend! Anything that will make you smile. Because smiling is definitely a form of medicine! Picture below is of my lovely brother Matt, (...typical face of his) coming to visit me!

Day 1 at UCL...

So I've made it up to UCL in London! I'm in a nice ward, way up in the sky with some lovely ladies which always makes it so much nicer. yet AGAIN I don't have a window bed, the amount of times I have to go into hospital and I never ever ever ever get a bed by the window! you're probably thinking why does that matter? But trust me, when your stuck in a box a little glimpse of sunlight from the window, can easily keep you sane! But anyway, one does not need to moan about it now and I've just got to get on with it! I had a busy day yesterday, literally as my eyes opened, I had doctors, specialists dieticians all here waving around their magic wand! Firstly, I saw the chronic pain specialist consultant who after going through everything, they came back to me and have decided they want me to have the Lignocaine Infusion which is a drip you have for two hours which has anaesthetic in it. It helps some people, and it can last up to one month! So we'll see if that helps! Also they recommended me to try using a TENS machine (Transcutaneous Electrical Nerve Stimulation) This works by mild electrical impulses being sent via pads on the skin at the site of the pain. These electrical impulses then work by acting on the sensory nerves to stop the pain signals reaching the brain. I must admit when I first tried it, it felt like tingling buzzing feeling, and so far it hasn't helped me but it's still early days, so we'll also wait and see! I'm on so many pain killers and I'm not keen for them to just keep increasing them so I'm really hoping this infusion helps because that would be amazing to get the pain under control! Also I saw the dietician, who I've met before and she's really nice. Again, we went through everything and she sorted out a plan for my feed for my JEC. Then I saw my specialist consultant too. I cannot believe I'm saying this but she told me because ever since they've increased my feed I have gained 1kg! BOOM. So they're going to see how the next week goes before we decide whether we have to go down the TPN road, because that really is last resort. As everyone knows I really don't want it, so fingers crossed my body can tolerate it. Also I've got to see the upper GI surgeons regarding my JEC and hopefully they can sort it out! So please cross everything possible! My day was made yesterday when my lovely friend Nikki came and saw me (sorry to name and shame you!) It is so nice talking to someone who knows exactly how you feel as we both have EDS, POTS and Hypermobility Syndrome and other things too. Also because I'm in a specialist intestine failure unit I've met some fab ladies in here who have similar conditions to me. You know, it really is reassuring that your not the only one going through this and if you're reading this and you yourself have any similar conditions or anything you want to open up to, I'm more than willing to help you. Right I need to carry on laying here so I'll let you get on, but I shall keep you informed on everything! Picture below is of myself and my big brother Matt visiting me at East Surrey Hospital...keeping my chin up because when things go wrong you have to pick yourself up and thats exactly what I'm trying to do! Have a nice day everyone! x

Its been a while...

I have been a rubbish blogger to you guys, and I can't apologise enough! but I promise I will try my best to fill you in and keep you updated on everything going on... I'm currently in hospital at East Surrey Hospital and I'm waiting to be transferred back up to UCL. The situation at the moment is that they are wanting to put me on TPN (fed through the veins) because of the occurring infections and discomfort from my JEC. Also they got very concerned about my weight due to the past months of my intestines getting worse and being so impaired from adnominal pain and nutrition. Because of this too, it means that I cannot go through the 3 week in-patient rehabilitation for the de-conditioning muscles and surgery for my new JEC because I'm not strong enough at the moment. So I'll have to be on TPN for a couple of months to hopefully get me strong again. I must admit, I was putting up quite a battle for not wanting to go back up to UCL, because of it being so far away and I couldn't understand why they couldn't do it here! However after talking to my consultant down here and going through everything with me he said I have to be on an Intestine Failure Unit to help me with everything as the case is so complex. I now have got my head around everything, but I must admit I wasn't a happy bunny when I first got here, I was definitely throwing all the toys out of the pram! But like anything thrown in your face you've just got to get on with it, and keep going! When you don't have a choice you've just got to put on a brave face and keep pushing on. I'm sure each time I go into hospital it gets harder and harder for me, as I hate being here but I know deep down it will make me a stronger person! Like anything in life the things you find the hardest will make you a tougher person because you have to find that little something inside you to get through it. All I ask is to be better, or is that too hard to ask is it? There are moments when I think to myself why me? What did I deserve to get all of this? But I wouldn't want anyone else I know or anyone else to go through what I do! and if I can help anyone else who needs to talk about anything then you know where to contact me! If we all pull together in the hardest of times like this as patients then we will all get through it, i truly believe that! I look around this ward I'm in now, and I know I'm in a hospital but everyone's faces in here looks so sad and I hate seeing that. I must admit I am feeling the same, but shouldn't we all be helping each other to pull through this hard time? As the doctor said to me today, 'you've spent a lot of time in hospital haven't you!' Yes I have, and now please lets stop it as I hate it so much! If anyone who's reading this who has been on TPN before or knows any more information about it, I would be so grateful, I always find that talking to people who have been in a similar situation knows exactly how it feels and that is precious. Last week, Ed and I had planned to escape and go down to Devon for 4 days and I made sure the doctors would let me go down before I had to come in...even if they did ring or emailed me most days! However I tried my best and it was so lovely. My favourite place is sitting on the beach, I find it so peaceful and you can think so freely! Below is a picture of me there, enjoy a cheeky glass of bubbles, all wrapped up in blankets, watching the sun go down...magical. Anyway, I better stop typing away and let you get on and I'll update you how everything goes very soon!  x

Every little helps

I can't believe I'm typing this, and if I'm being honest I'm quite speechless! But... you amazing people have started raising money for me to have treatments, equipment and extra help. People really do have big hearts in this world and I feel so humble. We all go from each day to day and hear about kind generosity, but it really does take a lot for someone to actually take that first step and to start organising a sponsored event! From the beginning I never thought in a million years that friends, family and even kind souls who don't even know me to put together their money to help me. I want to put every single penny to good use and I will try and share every moment with you so you don't miss out! Even at times like this when times are hard, it's amazing to have such great support around me and I can't thank everyone enough! I really don't know what I would do without all you lot, and you really are simply priceless! which is something that no money will ever be able to buy. The first thing we have put the money towards is this Donnerberg Body Massaging machine to help weak tight muscles, blood circulation, improves the nervous and immune system and promotes equality of sleep. This is great and it is going to be put to good use as it can hopefully help my weak muscles, help my circulation for my PoTS, and I hope relax the muscles in my whole body. I want to say a huge thank you to everyone who have put their money together to help me with things like this! You have no idea how grateful I am, and as you can see below in the picture, you have put a big cheesy smile on my face for a few seconds! x