It’s been a while since I last posted, the reason being it appears I have a brand-new chronic illness to add to my tally of chronic illnesses, shame we don’t get awards or a meeting with the Queen for our efforts. Anyway, I’m still waiting to be formally diagnosed but it looks like I have late onset asthma, which has thrown me for six and has huge implications for the medication I have to treat my Crohns.
Around the beginning of lockdown I decided to see if I could improve my fatigue as well as trying to loose some weight by introducing an exercise regime as I have put on at least two stone since beginning the Vedo. “LOOSE TWO STONE, BUT YOU HAVE CROHNS DISEASE!!” I hear you shout, Well, due to having Crohns my whole adult life; I’ve always been underweight so it’s a very unusual and uncomfortable feeling being over weight. I keep catching myself in the mirror doing a double take.
So back to my life changing exercise regime, for reference, when I say exercise regime what I actually mean is doing some actual exercise like the joggers you see in the park. Due to my increased waistline I barely managed to fit into my running shorts and T shirt, at this point I got the feeling my 15 year old son wasn’t to keen to been seen with me as he wanted to run at least 20m in front.
Everything started in the right direction; I had the couch to 5k app, water bottle in hand and a son too embarrassed to be seen with me and my portly figure.
It was within 10 minutes of running that I realised I was struggling to get my breath, I stopped a while and began running again, it was clear to me by that time that there was a problem with my breathing, I’d lost sight of my son who was running away into the distance, I found the nearest park bench and tried to regain my composure. The problem was, I couldn’t re-gain my composure, I could barely breathe.my son and eventually found me red-faced sat on the park bench.
Several doctors, scans and x rays’ lung function tests, antibiotics, results, more tests, steroids and nurses later, my consultant wants to stop the vedo and I want to stop the world and get off. All I tried to achieve was a bit of exercise, why does everything have to be so debilitating and difficult with Crohn’s?
But through all the ‘ups and downs’ of the investigations into my breathing problems, ive had one constant, one anchor of key knowledge to hold onto, an assertation that none of this is affecting the inflammation levels in my gut. Over this stressful period I used my IBDoc resulting in 2 test results of 38ug/u 86 ug/u over 6 weeks, which means my gut, is in good shape. So why stop the vedo?
I’ve got an appointment. To be discussed. Armed with more knowledge than most. I’m sure it would help if more people could monitor their own calprotectin levels too. But for now, lets see if it helps me.