If you read my recent blog about my recovery from the hospital, you’ll know that I recently had a long stay due to a terrible flare-up of an undiagnosed IBD. My consultant finally caught up with me properly last week and advised me that I have Crohn’s. It was always his first suspicion when I went in with that particular flare.
Getting a diagnosis is a funny old thing. When I tell people, their first reaction is “sorry to hear that”, which is a lovely thing to say, but honestly, I’m not sorry. I’ve suffered from these stomach problems for years. Over the last 3 or 4 years, I’ve been severely anaemic. I was misdiagnosed as coeliac a few months ago, and I thought I had answers then.
“Great,” I thought to myself.
“Now I know why Greggs gives me a pain under my left tit”.
When I started going downhill quite badly, with indescribable pain, weight loss and sickness I just assumed I hadn’t been careful enough with gluten. Being given the information that I have an IDB, and then having which one confirmed has given me the ability to now do as much research as I can into the condition and ultimately learn what works for me as well.
The first stumbling block I hit was that there is SO MUCH conflicting information about Crohn’s online. One of the best resources I have found is Crohn’s & Colitis UK. They provide valuable, fact-checked information, and if you become a member you get a RADAR key and a card that alerts people you need to find a bathroom, which is a lot more subtle than having to tell someone out loud. The only way to combat all of the vastly different information online is to keep track of what works for YOU.
The most useful thing to me has been to keep a diary of everything I eat, what tablets I take when etc. People will always be swayed to write about their experiences. I found that out the hard way when someone mentioned in an article that asparagus was fine for people with Crohn’s. Well, it was NOT for me. As someone who hates doing things in general, the thought of the amount of work I’d have to put into recovery and keeping well didn’t exactly thrill me. But there is no bigger wake-up call than ending up in the hospital for 3 months.
Recovery hasn’t been the easiest, and that is in part down to me sometimes having an “I won’t be told what I can and can’t eat” attitude. Guess what? This attitude hasn’t got me very far. A lot of people around me have probably waiting for it to dawn on me for a while, even before my official diagnosis, that I need to look after my body and stop being so keen to put it through absolute hell just so that I can eat an entire pizza on a Saturday night. The sheer agony of being in a flare and having SMA Syndrome at the same time now puts me off this train of thought.
Staying positive after a run of terribly ill health and a diagnosis like this can be challenging. But I do certain things to keep positive. I also luckily have a great support system in real life, and many of the people that follow me on Twitter have offered support and tips.
Ultimately, I’m determined not to let this stop me from enjoying life, and I’ve missed out on so many things being unwell for the last few years, I can’t wait to start getting better and getting back to socializing.
Love to know your thoughts guys?