Why I’m Doing The 2.6 Challenge For Crohn’s & Colitis UK

My journey with IBD has not been a smooth one, or at least not to begin with. Being diagnosed with a life-changing condition really does change your life. And I know that sounds stupid, but it’s true. Unless people have experienced it, I don’t think they really understand what it’s like to have your old life ripped away from you. And no matter how much ‘better’ you get, sometimes that old life just doesn’t come back, but after a while, you realise that’s okay.

I was diagnosed with Ulcerative Colitis in 2016, but I’d had stomach problems way before that. I went in for a colonoscopy, woke up after, and was told by a nurse that I had this condition and I needed to pick up my meds on the way out. That was it. No conversation about the condition or the medication, whether there was anything I needed to do or what the next steps were. So I picked up my meds, left and three days later was on a plane to New York for a University Trip.

For the first few months, all the information about my condition was stuff I’d found online. I didn’t know anyone else with the condition and I didn’t feel like I had anyone to talk to about it. I tried to understand what was happening to my body and for a long time, I thought I did. I had an appointment with my then consultant every 4 months (I think, this was a while ago and my brain is foggy on the best of days), and they would last minutes. If I voiced concerns, they seemed to be brushed off and I was told I just had to wait for the medication to work. Looking back, there were a few times where I could have spoken up about how my body still wasn’t right, but by that point, I felt like I was just a nuisance. So I accepted that this was my new life now, and I would just have to suck it up and deal with it.

My condition took a massive toll on my life, both physically and mentally. I pushed away those that cared about me because if I didn’t really understand what was wrong with my body then how could they. I was depressed and anxious pretty much all the time, although I didn’t think I was, I just thought that was what living with an incurable disease felt like. And then I ended up in the hospital, and things were not good. I’d spent over a week at home, not eating, with a fever, bringing up bile and not being able to move from the sofa. I was convinced I must have just picked up a really nasty bug that I couldn’t shift. I finally went to my GP, who pretty much gave me one look and wanted to know how I was still standing. I was tachycardic and my blood pressure was through the floor, so off to the hospital I went. I don’t actually remember the first three days I was there once I’d got a bed, it’s a complete blur.

The next thing I remember was speaking to the guy who is now my consultant, and I honestly can’t explain to you the relief I felt being able to talk to someone and feel like I was heard. He listened, asked questions and explained to me what he thought was going on with my body. And that was that I’d been undertreated. The medication I’d been taking, wasn’t actually doing an awful lot because the disease was still active and not under control. A few days later, I had an IBD nurse come into my room, to explain exactly what was happening and what medication I would now be on and what our options were. It’s worth noting that at one of my appointments after I’d been newly diagnosed, I’d asked about IBD nurses after having read about them, to be told we didn’t have any in the area so I wouldn’t have one.

After I was discharged, I was sent home with medication that I understood and knew what it was doing, I really understood what was happening with my body and how I had to look after it now, as well as a new consultant and a follow up with my IBD nurse. That was two years ago (ish, again, foggy brain). Since then I have had an appointment with an IBD nurse pretty much every 8 weeks as well as regular blood tests, an appointment with my consultant every 6 months, as well as starting an additional course of treatment alongside my regular medication. I can honestly say, that I have never felt more in control and supported in terms of my condition. I’m included in every decision about my treatment, the nurses have become friends who I know are always just at the other end of the phone, and I’m lucky enough to say that I am officially in remission.

So anyway, blah blah blah, what’s the point in all my rambling? Well, I don’t know what would have happened had I not found the team I have now. I don’t know what my life would look like, or whether I would even have much of one. Without the support that Crohn’s and Colitis UK give, we wouldn’t have as great of a support system out there. They help fund the specialist nurses, they help fund treatment and research, and they’ve built a community of others with IBD so that there is always a network of people to speak to. They offer all the information you could need to understand your condition right at your fingertips as well as helplines if you need someone to talk to. They help change lives for the better. And now they need help. Covid-19 has hit everyone, and it’s hit them hard. Charities everywhere are struggling and crying out for donations so that they can continue to help people. Crohn’s and Colitis UK is just one of many, but it’s the one that helped me. So I’ve been doing the 2.6 Challenge this week, in the hopes that we could raise some money, give back during these crazy times, and help them to help someone else.

I’ll always remember being in that hospital bed and having the consultant explain to me what was wrong with my body, and what we could do to help it. He told me that unfortunately, it couldn’t be cured and this was something I would likely have to live with for the rest of my life. But it was possible. To live. To have a life. And that was his goal. Not to cure me. Not to fix me. But to give me my life back.

He succeeded. And now it’s time to help give back someone else’s.

Please give anything you can – https://www.justgiving.com/fundraisi…/taylor-s-2-6-challenge