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
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