Crohns is back and fighting, but so am I…


Hi all,

So sorry for the dramatic last post and then lack of follow up – to say that this Easter has been hectic for me is an understatement! I have had the hospital filled first week, and then since then I have had to complete three 2000 word essays, my dissertation and prepare for two exams – all of which happen within 3 weeks of each other. Stressed doesn’t even cover it!

Writing this quickly just as an update, before packing up and heading back to university for the final push! Cant believe I have nearly finished, so much has changed…but that’s a post for another day!

With regards to my crohns the colonoscopy was grim (aren’t they always?!) and they confirmed that there is ulceration indicating that Crohns is back, which is very disappointing; but luckily it isn’t as bad as was expected, it currently isn’t too aggressive – which is something positive! I have only upped my current medication by 25mg a day, which isn’t even an extra tablet, so so far it is all under control. As it stands now though, I haven’t been told to d anything really, just to wait..just to see what happens and THAT my friends is a little terrifying. Now as if I don’t have enough on my plate, I was told to meet my specialist when I get back to university to discuss future treatments and the future in general – but to do this my private health care has to approve the meeting, and they wont do so at the moment because I fear I have reached my maximum usage. They need to review my case files and assess how much, if any, more support thye can provide. This is SUPER stressful, it not only requires so much more of my time to fill in forms and chase secretaries to follow up to allow this assessment to take place, it also means that there is the chance they will not approve for me to go back – just cut me off as it were. My parents have said they will pay for me to have one last meeting with my consultant to arrange a future health plan if thi s occurs, but I like my doctor and want to stay with someone I have finally found who I trust and like – ARGH!

But, I have to remember how much I did with my crohns – and that was when I was really, really ill. I went to Rome, I excavated an archeological site for three weeks, I travelled to Naples and Pompeii. I climbed Mount Vesuvious – actually did this during a flare and was nearly crying at the top- but I did it. I climbed it. I conquered it!  This is what I need to remember, I was a lot more ill last time, and I still managed to achieve so much. now I know what is happening, I know what I am fighting and I have help and support from the start – I am stronger and wise and better, which means I can achieve even more than last time – right? It means I shouldn’t let it get me down and should just keep fighting for what I want to do in life, and Crohns can come along for the ride if it wants, but it is NOT in charge.

Sometimes a cheesy self -motivation speech is just what you need.

Chins up,

H xx

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Scars, Siblings and Smiling


My scar is looking brilliant, considering it is less than a month old! (see my older post: https://livingmylifewithcrohns.wordpress.com/2014/01/12/the-greatest-healing-therapy-is-friendship-and-love/ for a picture a few days ago) Although, to be fair I have never had an operation before, or even a proper scar, so I actually have very little idea about how it should be healing / looking like 3 and a half weeks in – but regardless I am very proud of my little body soldiering on through and fixing itself…well, it does owe me, its not like it normally works properly!

ANYWAYYY I am back home and am loving catching up on some missed family time, and enjoying the feeling of getting healthier and stronger again. My little siblings (a brother aged 2 and a sister aged 6…also a younger brother aged 18 but he isn’t really involved in this story 😉 ) LOVE looking at my scar, they find it hilarious. Most days when I get back into the house my youngest brother goes “me see your tummy tunnel, tummy tunnel!!!” which also involves squirming around and trying to pull my top up, no matter who else is in the room..awks. He loves it, he thinks its so weird, as soon as I show him he always looks shocked and goes “it very big” and then poddles off! My sister takes it one step further, this was our conversation yesterday:

“I want to see too if he gets to” Me : “Okay, look, its the same as yesterday.”
“Hmm…Its quite scratchy like isn’t it”
Me: “What…?”
“Well, it looks like a big scratch, but not a very good one because its a teeny weeny bit wiggly if you look really close. And my scratches are never wiggly like that.”
Me: “Oh. I know, it looks pretty weird, but it looks so much better than it used to, I think in the future we will hardly be able to see it”
“REALLY?!?! Well I don’t know it at the start because you had a big plaster on and wouldn’t let me see. remember?! Even though I showed you my wobbly tooth straight away”
Me:”Sorry. The doctor said I had to!”
“I think your doctor might not be very good. He made your tummy worse – now it has a big hole in and a weird scratch!”
Me: “No, he was making it better I feel…..right everyone left the room. good”

They make me laugh, blatant honesty is all you can expect and I love the fact that she still sees my illness as worse now than before because of my “wonky scratch”, what an innocent way to view it all, I love it!
Aside from that my recovery is continuing slowly, I am hoping to return to university next weekend – fingers crossed! I am so sick of being the ill kid and missing out on all the fun and everything involved with being there! I have missed all my exams and coursework deadlines – so have been busily filling out lots of paperwork, forms “evidence sheets” and the like to submit to my university so that they can grant me special considerations and then allow me to retake / re submit later in the year. FINGERS CROSSED. Well, not fingers crossed, if they decline it I have failed the semester and will be kicking up one hell of a fuss, since this is what I was told to do! Anyway, that rant is for another day 😉

I have been busy this morning ringing around the hospital and insurance companies, in an attempt to square everything out, because my organisational skills went downhill fast with the operation, I just had too much else on my mind! BLEUGH. I am having such bad sleep at the moment, I don’t manage to fall asleep until something crazy like 3am most days, even though I am in bed from about 11.30; too much on my mind I think .I am making list after list on my phone of things to do, and then slowly trying to work through them the next day…what an exciting life I lead!

Anyway, just thought my scar anecdote might bring a smile to a few of your faces. Apologies for the rest of the ramble! Just remember, as long as your smiling, you will be okay! Whether you have your own wonky scratch as a physical reminder of your disease or not; find something about the situation that will make you smile when things get tough, its the best medicine!

H x