Hi all,
So I got my blood results back and they were basically normal – yay. But then on Monday I was feeling really bad, my stomach was sore and sensitive and I felt so sick; not a good day at all. Unfortunately struck at the worse time, what with dissertation panic and all my other university work. I had to retire to bed for the evening and call upon my lovely boyfriend to come down for the night for get-better-soon-snuggles and a quiet night of TV in bed. Luckily it made me feel better by Tuesday, and I just felt a little sorry for myself and sore the rest of the week, and if im honest a little shaken – it was the first time I have actually felt, really, “crohns ill” since my operation, the first time I can definitively say YES. that was crohns. And that my friends, is more than a little scary.
I went ahead with my appointment with my specialist on Friday (god, was it only yesterday?!) but been in denial about blogging the results – infact I refused to fill my mum in on any more than the basic details because I cannot face going over them repeatedly – passed her questions on to dad for answering! In essence, Crohns is most definitely back and unfortunately I am starting to feel its effects, and this means It is probably only going to get worse. Luckily this time round it has been detected and understood a lot quicker (through the colonoscopy, seeing a specialist and my own understanding and experiences) which means we have time to act quicker before scar tissue forms as it did before. My doctor is AMAZING or at least I think so – and he wants me to not go back to having “duvet days” but to carry on living a daily life which is normal, and as he put it in- not just look at the cost on my body of having this illness, but the cost on my life. Those experiences you miss when you are ill or cannot enjoy – and he wants to stop this happening again, which I agree is a fantastic aim; I am just in denial about needing a step up with my medication.
I currently take 150mg of Aathiaprine a day, and am now commencing the pre-test to begin Humira (spelling?!) which is something I have wanted to avoid. Both Humira and Infliximab with their injections / infusions seems a lot more serious, more scary, more like I am ill. and I have TO INJECT MYSELF. I hate needles and injections enough to begin with – what if I cant do it?! what if it hurts too much? what if I do it wrong? ….what if it doesn’t work and this is just a crash and burn back to being so ill like I was last year. What if nothing I do changes that? I am terrified. and scared. and I know one injection every two weeks is worth it, if it can stop crohns then that is amazing- but what if it cant? what if its back forever and maliciously?
I know that seems over the top, and I needed to get that out but I also need to focus and BE STRONG. be strong! I have so many amazing people in my life that can help me, and for that I am grateful! For now I need to focs on the blood test, and chest scans etc and get it organised – and RESEARCH RESEARCH RESEARCH. I think it is so important to understand what you are pputting into your body! So…here begins my journey of Humira. I will keep you updated as I go ; heaven knows I wish I could follow someones story who has been through this already – so maybe I can provide that for other people . Fingers crossed
From one very very scared person
H xx