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.