I think its back, and I am scared


I think, I have a gut feeling, that its back.

 I hope its not, I hope I am wrong, I hope I am being paranoid. All through this process whenever I was given options – for example “we are starting this medicine theres a 70% chance it will work, but if not we can up the dose” I needed the raised dose. “We probably can just do a scan, if not we can do a colonoscopy” I needed a colonscopy. “only as a last resort do people need an operation, its rare”…well guess who needed the op? I know. I know, its moaning and self -pitying to write like that, and for the first time in a long time I am sat here pouring out fears in a way that probably makes no sense; I am writing for the sake of spilling my feelings as opposed to trying to write a good post, necessarily. I am writing because I am scared and I need to blurt it out, not because I have an interesting thought I wanted to share.

 

My colonoscopy has been moved to Friday the 13th June… I know. Guess what that day is? it will mark exactly 6 months TO THE DAY that I ended up in an ambulance into A and E because of a crohns attack. I guess it must be fate? I hope that it is the neat end to a full circle, from a rapid deterioration to a recovery and confirmation of being all clear. I hope so. But I am worried its just a sign that I had my 6 months circle, lets begin again.

 

I am being selfish I know, it returning will not be the end of the world – worst things happen. I will get over it. I will. I just don’t want to have to get over it…I want to be able to be lazy in terms of not having to fight my body to function normally and eat what I want and do what I want. I want it to just work, to keep enjoying this freedom and happiness I have found since the operation. It wouldn’t be fair. But then, life isn’t fair….gulp..

 

Sorry, for the deterioration in post quality! Sorry for the rant, but thank you for being the outlet to the rant, it was needed

 

Hope your days are going better than mine

H x

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ten thousand tablets later…


3 a day

21 a week

84 a month

1008 a year.

10,080 in ten years

So, if I carry on taking my small little 3 tablets a day of Azathiaprine, then potentially by the time I am abour 30 years old I will have taken over ten thousand tablets in just the last ten years alone. Adding to this any antibiotics I may have to take because of a reduced immune system from the medicine. And the normal like paracetemol. It both amazes and disgusts me.

I am amazed that modern science can remove the crippling pain that I felt for so long last year, I am disgusted that my body couldn’t sort it on its on. I am amazed that this is relatively new technology, and what else could be achieved in the future, I am disgusted that it was my body that failed to function properly on its own, I am amazed, but I am also disgusted.

I am lucky enough to be getting my treatment done privately, through private health care my dad receives with work; although I am only covered another 3 months until I turn 21..but I am still paying for all my medicines myself. Every time I go to get a prescription it is at least £8, and due to the changing medicine and the amount at which I get through them..I am going regurlarly. I don’t even want to think about how much that will add up to.

 

I was looking at the British Museum website for part of my studies, and found this exhibit:

https://www.britishmuseum.org/explore/highlights/highlight_objects/aoa/c/cradle_to_grave.aspx        called “From Cradle to Grave”,  about the number of tablets the average person has in a lifetime. It follow a male and female story. Both contain over 14,000 pills / tablets / lozenges etc – which doesn’t include the ones that we take over the counter. If so it would be about 40,000 pills each (according to the website). just re-read that number in your head, forty thousand. That is a huge, a ridiculous number. But for me, and others like me, that number will be oh so much higher. I will be taking 1/4 of that number in the next ten years of my life alone – and ontop of that many other potential pills -antibiotics, contraceptives , etc. That boggles my mind.

 

I am so grateful to live in a time when this medicine is available to help my body to cope, and to allow me to live once more a normal life. But I am also a little disappointed in myself, in my body, for not being able to cope. Why does it need THIS much help? Why couldn’t it just…well, work?! Regardless, it doesn’t and life goes on. But that number of pills in my body, each releasing a little something which affects how my body should naturally work…. I know I need them, but it feels a little weird.

 

Full of reflections today,

 

H x

 

I think the hospitals miss me


So, its been 10 days since my last blood test and about Christmas since anything more intrusive / intensive than that has happened – but it was getting too good to last! Before you panic, Crohns has not returned (or at least not that I know of, yet) but my doctor yesterday asked me to go for another colonoscopy some time in the next 3 weeks, since it will soon be nearly 6 months since the operation – mad!

 

Anyway, of course I will be getting it done as per his recommendations (as long as the insurance company agree) and I will also get it done ASAP, since it will be a peace of mind to know if it has entirely gone and if not what has developed again so that it can be treated more aggressively from an earlier stage. Although, in my head I know it could be back and even if it IS back it does not mean that it will be as bad as last time…if I hear that is I think a little bit of me will be crushed. It would seem a little in vain to have all of that done and then to be clear for less than 6 months. But, we shall cross that bridge as and when we come to it I suppose!

 

H x

Work work go away, come again another day


Hello all!
sorry for not blogging for so long, been thrown back into the university lifestyle with a bang – 4 essays, 2 group presentation and resource packages, an assemblage analysis, an exam and an online test are all coming my way within the next 10 days; madness!

I am loving being back and the freedom, although this supposed “freedom” involves pretty much all day everyday in the library- its beginning to feel like my second home!

Anyway, enough about my now-boring life! I found this website the other day: http://www.medicalnewstoday.com/categories/crohns
it is an uptodate area where all the latest crohns- related news is posted. At first I thought I would be super organised, and ontop of it all and try to read up; but quite truthfully I don’t have the time. I have read one or two, and they are weirdly boring and yet excitingly inspiring all at the same time; so if you have some free time check it out 🙂
Also, when I was having some of my darker days I joined forums and groups : like Crohology and going on sites like “Me and IBD” even though I was never a very active presence, it was comforting – so my top tip of the day is to have a go if your feeling bad, stop yourself feeling isolated and make connections with people, even those you have never met before, it helps!

I hope that nobody is suffering too bad from post-Easter food madness pains – and that you are all enjoying this stint of nice weather we are having!

Happy thoughts 🙂
H x