If you’re here, I’m assuming you’ve read Part 1 of my IBD Diagnosis story. If not you can find it here. This is the second half of my story, enjoy…
We’d heard from others that referrals to specialist doctors could take up to a month just to get one appointment and with the pain I was in and the weight I had dropped, it would’ve been really dangerous for me to have stayed this way for much longer. Luckily my mum had private healthcare cover with her work so I managed to get an appointment within a week. In the very first appointment I was told all my symptoms sounded like a form of Inflammatory Bowel Disease but they weren’t sure what type it was. Only the dreaded colonoscopy would be able to confirm it.
At this point, life was quite literally torture for me. I couldn’t even sleep to get away from it as I’d be woken up with the symptoms. Not being diagnosed with anything also meant I couldn’t take anything for relief as they were unsure of the effects it may have on my body. Being told that I had to have a colonoscopy wasn’t even scary as all I wanted was an end to the suffering I was going through, no matter what I had to go through to get it. I was booked in for this two days later so we could get a diagnosis as soon as possible and hopefully put me on some sort of medication.
After making it through the whole ordeal my diagnosis was said to be a type of Ulcerative Colitis called Pancolitis. This was later double confirmed by the biopsies they took. So it was official, I had joined the chronic illness crew.
I was put straight on Prednisolone which is a steroid that is meant to calm inflammation in the body. It’s used as a short term solution whilst you’re waiting for proper treatment and I was meant to be on these for 8 weeks gradually tapering off of them. 11 months later and I’m still on them due to my body having a meltdown every time I try and come off of them. This is because I haven’t yet reacted well to any treatments.
Coming to terms with the illness was really hard. Going from a normal, healthy human to a shell of myself within a couple of months was terrifying. At one point I genuinely thought I was dying, it felt like my body was just shutting down and all anyone could tell me was that I needed to “chill out” and meditate. The best I can explain the disease for someone who doesn’t have it, is like having a constant severe stomach bug with all sorts of additional side effects, depending on the individual. The anxiety that comes with it can be pretty life-changing too, especially if you already suffer with it.
Being diagnosed with a lifelong illness is the most daunting thing. No one can prepare you for it and you never think it’s going to end up being you. As humans we naturally get through hard times by looking and hoping for the light at the end of the tunnel. We count on the day when our pains and worries will be relieved but there’s no guarantee with a chronic illness, which for me personally is what is so scary. There’s a chance of remission which I recently did a post on here but not everyone is lucky enough to reach it. Despite everything I am insanely grateful for the life I live and am determined not to let it make me bitter, but better.
This was only the first couple of months of my story. It’s been a year now since all of this started happening, my diagnosis and unfortunately I’ve been too unwell to work since July too. If there’s anything else you’d particularly be interested in me sharing – such as medication and effects on the body, how I’ve dealt with work/relationships and how it affects your mental health etc. then please let me know! Or if you’ve been through/are going through the same thing and need to talk, feel free to drop me a message, I know how scary it can be. I’m determined to get honest information out about experiences with this disease and my diagnosis was extremely quick compared to a lot of people.
Thank you SO much for reading and be sure to check back as I’ll definitely be uploading more posts like this!
I’m also taking part in the Crohns and Colitis WALK IT event on the 12th May and am hoping to raise at least £100 for the charity which will go towards vital research and giving more people the information and help they need with this disease. You can visit my JustGiving page here. Even a £1 donation or simply a share of the page would mean the world! Thank you.