How having Crohn's disease has made my life better!

Name: Simon Booth
Year of Birth 1985
Lives: Yorkshire, UK
Type of IBD: Crohn's ileocolitis
Diagnosis Date: November 2014

Quite a bold statement, isn't it? But I can honestly say that having Crohn’s disease has changed my life for the better. Now, I have definitely had moments where it’s not been rosy and still have days like that too, but I can honestly say the life that I am living now is of a much better quality than it used to be and that has been down to this disease.

Let me give you some background before I go on. I am currently in remission, thanks to Humira, which is a massive relief and I am savouring the time whilst I can before I potentially become “immune” to the biological drug (which can apparently happen). What I detail below though started before I went into remission and I am 100% confident that the choices I made also have made a difference in me gaining remission and staying in a fairly good state for the last four months. 

So what did I do? I decided late one night, when laid in a hospital bed, on the same ward that I was in six weeks previously, that I wasn’t going to let Crohn’s dictate my life anymore. I was going to try and lead a life where Crohn’s wasn't the main decision maker. I wasn’t going to become a prisoner to it. Yes I knew there would be times that I may have to succumb to Crohn’s and it may win some of the small battles but I was going to do all I could to lead a better life and win the war overall.

The first thing I did was to start focusing on my body and what it was telling me. First on the list for this was to sort out my diet.

I knew what the majority of my “trigger foods” were. Anything spicy, creamy, alcoholic were all out and were out a long time before my two flares that hospitalised me in 2015. As I was laid there though I really had to think about everything I was putting into my body and whether it was good for me.

I immediately started to cut out (alongside the above)

Over the next few months I also started to cut out a lot of high sugary foods alongside a healthy eating plan I was using from work and amazingly I found that I didn’t miss the snacks as much as I thought I would.

Now when I was flaring throughout April to December in 2015, even with the 26 weeks of Prednisolone, I didn’t really have an appetite. I ate, don’t get me wrong - I love my food - but even with the steroids I didn’t have that urge to overeat and only ate when I was hungry or when socially acceptable. 

Sticking to my new food regime helped me focus on putting healthy, clean foods into my diet. This won’t be for everyone as too much fruit now still gives me grief. The message here is understand what food is good for you and stick to that. Don’t aggravate your body anymore than it is already by feeding it something it shouldn't be having.

What differences did I notice? Well, my flare symptoms weren’t as bad, I wasn’t as bloated as I was, the bursting at the seams and stabbing pains lessened and I lost some weight (which could have been from the flare but the biggest surprise was that I lost weight whilst on the steroids which is something that doesn't happen to many fellow sufferers).

So that was the food sorted. I started to feel like I had more energy again (like a 30-year-old should have felt and not like a 60-year-old) so started introducing some exercise again.

This was my second focus in thinking more about my body.

I had been fairly active in the past, I was training for a 10k in the winter of 2014/2015 but the flares soon stopped that. This was another thing I consciously had to make daily decisions on. It was possible that the training I was doing was putting my body under more stress than it needed. So, however much I wanted to run the race and train, I had to make a decision. Keep doing it and risk flaring and becoming ill or step out this time around, get your Crohn’s under control and do it later in life. So that’s what I did.

Listening to your body is really important with an autoimmune disease. It’s over working as it is, maybe not getting all the nutrients it needs and it is already under extra stress, so why put it under any more than it already is? Even now I may have exercise planned but if I am not feeling like I have the energy (even though people say exercising gives you more energy), then I miss it out. We’re not as able-bodied as everyone else so I still take it steady when I need to.

Back to the summer of 2015 and I joined the local gym again. I started with one or two gym sessions a week with some cardio work on the cross trainer (still no running) and weights. I also went to a Body Combat class on a Monday morning and a yoga class the same night. I’ve done yoga for years and not only does it help with toning and strength it also helps my mind, which I’ll explain later.

Over the months I built this up to attending Body Pump classes too and eventually started running on a treadmill and as the weather improved then started to run outside again! I have loved it too. I am now running a few times a week with the classes thrown in and my body (outside and in), is in the best shape it ever has been.

I’ve managed to maintain my weight fairly successfully (the appetite I mentioned I lost came back once I gained remission from the Humira and I now have the hunger of a hippo some days.) The cravings for sweet things came back too. 

The exercise was really making me feel better. It wasn’t curing my Crohn’s obviously and I was still flaring, but I felt better about myself.

I learnt really quickly it’s important to get to know your body and it’s limits. I really recommend learning how to take care of your body and do things that will help make it stronger - whether that’s exercise, resting when you should or taking vitamins. Listen and adapt to what your body is telling you and you’ll get more back from it.

At this time in my life (turning 30 was quite pivotal for me) I really took the time to take stock of what I wanted life to look like in the future. Having Crohn’s disease and recurrance of the disease within mere months of my resection was a really big wake up call for me. This disease is with me for life but I am only getting one shot at life. And this one shot was already at a major disadvantage. So I made a promise to myself that I had to be happier with my life and happy with every decision I made as I wasn’t going to get it again.

Focusing on my body more was having a better impact on my overall wellbeing. Earlier I mentioned about yoga helping my mind and in my Crohn’s journey I suffered with anxiety in my job which didn’t help with my flares. So I wanted to focus more on this.

At work we were starting to focus a lot more on wellbeing and introducing mindfulness. It was a subject that really interested me so I downloaded an app called Calm. If you’ve not heard much about mindfulness, I definitely recommend it (there are articles on IBDrelief). You’ll probably read about it being meditation and that’s not everyone’s bag, I wasn’t sure if it was for me to start with.

What I interpreted it as though was a portion of the day, spent purely focusing on me. No emails, phone notifications, conversations or even thoughts. It teaches you how to focus just on that moment in time. There are lots of studies that prove how mindfulness can increase overall wellbeing - like lowering stress, dealing with emotions, helping people make decisions, increasing positivity. For me it was ticking all the boxes and it still does now. The anxiety is less, I deal with stress better, sleep better and I am much more mindful of moments throughout the day. 

Focusing on this really helped with my decision making. So when I really wanted that bowl of porridge, or to stay in bed and not go to body combat (because I was being lazy not that I didn’t have the energy), I was able to make the right decisions and much quicker. So not only was I focusing on my body and how I looked after it, I made sure that I gave my mind everything that it needed to remain positive, happy and strong.

So I did all of this within six months. For those six months that I started to create these new behaviours I still flared and some of them were really bad and undoubtedly the Humira is what has kicked me into remission. What I found was that even though I flared, I dealt with them better. I was stronger, more resilient in my body, mind and soul. I was more positive and dealt with what was happening better. 

There is no cure for Crohn’s Disease… yet. But whilst there isn’t I decided to take action and have as much control as I could over my body and my mind, which helped my soul.

Today I am healthier and stronger in my body, thanks to the choices I make on my diet and the exercise I have introduced. (Sometimes the banned foods creep in now and again but I always regret it. I had porridge not so long ago and even though I am in medical remission, my body still isn’t agreeing with it).

I am making better decisions thanks to feeling more positive about life in general. This helps with the food choices, the anxiety and emotions that can cause upset. I am reminded daily that this is my only shot at life so why would I make a bad decision that is going to cause me issues and upset in the long or short term?

Stick those two together - my body and mind - and that’s feeding my soul. I can honestly say I have never felt as happy as I have for the last year thanks to me taking control of my body and mind. I’ve made changes - and they might not be possible for everyone - but it’s taking some control over it all that makes the difference. The moral for me is that you get to make the decisions, you get to make the choices in life.

There are two quotes that I know of that really helped me think about this article and also the decisions I’ve made over the last year.

Jean Nidetch, the woman who founded Weight Watchers, said “It’s choice, not chance, that determines your destiny” and she was right in every single way. I wasn’t going to leave it to chance any more and started making the right choices.

I recently read Oprah Winfrey’s book What I Know For Sure which is full of editor’s letters from her O magazine. In one entry, where she is talking about her weight issues over the years, she says: “When you nurture and support your body; it reciprocates. The basis of that support is exercise, like it or not. The most essential benefit is more energy; weight control is a bonus. I know for sure that taking care of your body, no matter what, is an investment and the return is priceless”.

Both of these have always had an impact on me and even though I know the thought of exercise for some IBDers is far from their minds, the premise of focusing on your body is still the same.

So the reason behind this article? If it wasn’t for my Crohn’s disease I wouldn't be in the place that I am now. The happiest place I have been for many, many years. Yes, I am in remission - which makes such a difference - but what I want everyone who reads this to do is to take a moment. Just double check you are doing everything you can to make IBD as easy as possible on your body, mind and soul. If you aren’t - why not? It’s time to start looking after yourself and think about the changes you can make to help live with this disease.

You can live with this disease, you just have to decide what you want that to look like and then go and get it. 

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I'm a 30-year-old guy from East Yorkshire diagnosed with Crohn's disease in 2013. I had an ileocaecal resection in 2014.

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