2 Weeks In...

Day 14 of being in this hell hole also known as UCL hospital. I have been here for two weeks now and todays the first day I've been well enough to finally to get on my laptop and do a bit of typing away for a couple of hours. I'm not going to lie, these past four weeks have been pretty dreadful and I have finally ended up back here in my specialist hospital for more treatment. If I take you back to a couple of months, when my JEC also known as a feeding tube into my intestine become dislodged which caused huge amounts of pain, but then nature took control and it eventually made it fell out. Since that day I was waiting for surgery for a new one to be put in and another chunk of my intestine taken for a biopsy, due to the last one coming back abnormal. However...long story short, but I waited and waited and unfortunately a couple of months went by, without no nutrional feeding which eventually made me very poorly and lost so much weight that they are now unable to do the surgery, as I wouldn't make it through...yes, proper rubbish luck right there. I then saw my consultant in clinic who couldn't believe the mess I was in. She said I had to be admitted as soon as possible because I was in a critical state and my organs were at risk of starting to shut down. I finally got a bed up here at UCL where they put a PICC line into my arm, (a more permanent line into my blood stream) and I've been started on TPN. (Intravenous Parental Nutrition) basically getting fed straight into my bloodstream. It's very high risk, and when I had this a couple of years ago I got an infection from it and made me very poorly, so this time I'm sleeping wth my eyes open! My bloods were all other the place and my white blood cells were low but they believe this has happened due to maturation and hopefully with TPN they should improve. So I'm currently attached to a stand pretty much every second of the day, but pushing it around is a work out in its self! The plan was to be on the TPN for four weeks and then to be should be strong enough to have the surgery however since being in here the situation has changed, and they're talking about possibly going home with TPN for a couple of months and then coming back for the surgery. I must admit I a bit annoyed as going home with it isn't straight forward, as they have to involve district nurses etc but if it has to be, then I don't have a choice and I've just got to get on with it and come out the other side! Also since being in here they're trying to get the pain under control as well as the sickness as they've both got really bad the last couple of weeks. Apart from that, thats all to report at this stage. Still on a very long road ahead but I've just got to keep positive and keep going! Friends and family have been amazing, and they've kept me going. Below is my brother Matt and I standing by the only good thing about this place and thats the view, being on the 13th floor has its perks!...if thats even possible! Have a good week everyone and I shall keep you all up to date as best of possible x

January Blues

Well... this year has got very ugly very fast. January blues really are true for me...or should I call it January is doomed. The only positive is that this time last year, I was a inpatient at UCL and was in hospital for 5 weeks starting on New Year Eve...couldn't have been more of a horrible time. However don't get you're hopes up... i have already annoying been in hospital this year but thankfully for only a couple of days...still just as bad though. I'm sure each time I have to go in it gets worse and worse. Maybe its because I know how rubbish it is in there...24 hours feeling like a month and the worst bit I find is that is I hate feeling stuck in there...such a horrible feeling. But you've just got to keep going and hold your chin up because being negative gets you nowhere!

Now let me bore you with updating you on everything thats going on...ok this could sound confusing, so be prepared. After coming back from an amazing couple of days away in Austria in December, the next morning I found myself sitting outside my consultants room...which couldn't of felt more different from the previous days. My JEC had become extremely painful and I couldn't even flush it without screaming the house down...and thats no exaggerating! I was told it was infected and I was put on a 2 week course of antibiotics. The following week, 4 days before Christmas and I had an appointment with my surgeon for a follow up of the surgery I had 4 weeks prior. By this point I had a very odd lump appearing underneath my skin next to the JEC. He took one look at it and straight way said it was definitely not right, shortly followed by him giving it a good push...typical doctor of which he was lucky I didn't slap him for as it was so painful. He came to the conclusion that the JEC had become dislodged, meaning that the flange (hate that word) had come out of the bowel and was digging into the skin wall from the inside. I was told this meant I had to have surgery again...my heart sunk to the bottom of the floor. what he would do is to take the old JEC out, sort out the bowel and put a new JEC in. It seemed like I didn't have a choice and I just had to just keep going as it needed to be done. At that stage he said stop using it...unknowing I was unable to use it anyway making it 2 weeks without feed from that point. If you're like me, and you have to rely on it nutritionally because feeding is the main source than you know 2 weeks is a difficult time. I am also very limited on what I'm aloud to eat orally at the moment with the unsuccessful dilation of the pylorus I had, all I can have is fluids/jellys/fromage frias/soup and supplement drinks. This all couldn't have happened at a more worse time of the year because it meant that everything had slowed down to a snails pace with which felt like every doctor going on leave over christmas. However,  a couple of days later on, on Christmas Eve and nature had taken control and the JEC had actually fallen out...you could say I gave birth to a JEC? ...we couldn't believe it! I luckily got an appointment with the surgeon 4 days later, where he obviously said I still had to have surgery but now just to put a new JEC in. This was classed as an emergency and I was put on his following Friday list. He enforsized that I needed to have 2 or 3 supplement drinks a day because each one is 300 calories. This had to be a must because I had to be strong enough to get through the surgery and also I wouldn't heal too. One week later and I unfortuently was admitted into hospital. I had not been a feed for 4 weeks, was very dehydrated and my body was really struggling and I had no choice. However things had unfortuantly got too bad already and I was told I couldn't have the surgery because I had lost too much weight and wasn't strong enough to get through the op...I was gutted, and was so upset because all I wanted was for the op to be done and everything to be sorted so I could get back on the road. I was fitted with an NJ feed (a tube down my nose)... which I hated even more than the time I had one before...if that was anymore possible? I was told I had to have one for a couple of weeks or until I was strong enough again to get through the surgery. Thankfully I was aloud to go home with it, which was amazing to be free again however I hated having a ugly tube on my face. So many people on the outside world really do have a good old scare at it and I know I should just ignore them but its so hard. I don't think they even realise they're even doing it...really I should say 'yes was there something you wanted to say?'...I would be a millionaire for every penny someone looked. But you must try and not worry about what people think and hold your chin up and keep going. I just kept thinking its only temporally. Two weeks on and things have gone down hill even more. I saw my consultant in London who firstly, has said she wants to try another dilation. This time for it to be done at UCL and to be done by a consultant who has successfully done it before, so keep everything crossed that this time it is successful. Secondly, she said she wants me to have the surgery for a new JEC and another biopsy taken as soon as possible. Frustratingly the last section of bowel they removed for a biopsy was 'blurred' from inflammation caused from the dying bowel they removed. Making this section of bowel its 3rd biopsy! Currently, I'm in constant contact with UCL because ok, I admit things really have gone down hill and I couldn't feel anymore poorly than I do. Everyday life has become such a struggle but I'm trying my best to keep going. Everyone is being so kind and caring and I couldn't get through each day without them. In times like this, you must really try your hardest to stay positive because negativity makes everything even more of a challenge. If you're going through a difficult time or experiencing anything I have mentioned then please don't feel like you're alone. I'm always free to chat or help with anything you may need.

Magical Moments.

I have been one rubbish blogger theses last couple of weeks, but we all know that christmas is not a very quiet time for anyone! While I was still in hospital after having surgery, Ed and I booked a two night getaway to Innsbruck, Austria to especially see the christmas markets. With everything going on, and doctors advising me not to go I was so determined to get there! ...three weeks later and I was there and I couldn't of been happier, especially after having a cheeky cosy cup of mulled wine! It was so festive, with christmas lights beautifully placed and the sound of christmas carols being played. We spent the precious hours wondering around the cute local christmas markets, which had locals masterpieces. Before then, I had never been to the mountains and I was quite overwhelmed at how breath taking they were! One morning, and with six layers on...we made our way up to the top of the mountains in the cable carts to where we reached fluffy, crystal white snow! It was so magical and I was on top of the world and I couldn't of felt more away from reality and my dreams were coming true! ...If only the doctors could see me now! It was a moment I will never forget and its now locked away in my mind forever!

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!