How I Learned to Lose Control Living With Crohn's


I am a self-admitted control freak. I have been my whole life. I’m forever ticking off “to-do” lists, preparing for events way ahead of time, planning trips away, living by my diary, and organized with everything. Some would say anal (pun intended)!

How can you be a control freak with inflammatory bowel disease (IBD)?

Answer: You can’t.

With an inflammatory bowel disease like Crohn’s disease, you have little or no control over many things: your body, symptoms, reaction to medication, side effects, or whether your treatment works.

You don’t know how you will be feeling from one day to the next. You can’t say whether you will be well enough to go to work or keep a lunch date with a friend or go on holiday. You can make plans, but there’s a real chance you will have to change or cancel them.

Of course there are things you can do to help and ways you can try to have some form of control. For instance, controlling your diet, ensuring you take your medication and getting enough rest can sometimes help. But even when you follow a strict plan, things don’t always go to plan. Sometimes these things don’t make a difference. I kept a food and “poo diary” for years and there was no correlation between what I ate and the state of my disease. I couldn’t even control that!

I literally felt like I had no control. No say in the matter. Many days, I didn’t. This was so difficult for me. I was used to being organized … having a plan for the day, the week, the year, my life … and being in control of that plan.

I’d get frustrated if I hadn’t crossed everything off my list at the end of the work day. I hated having to cancel social plans at the last minute. It infuriated me that I never missed a dose of my medication, followed all my doctor’s instructions, consistently did those horrible nightly enemas, yet I wasn’t getting better. I hated that some days I couldn’t even do the grocery shopping. My body often wouldn’t even allow me to do those basic things we take for granted. I just wanted to be “normal,” but I had no choice. No control.

What you do have control of is how you deal with having no control.
With Crohn’s you have to learn to manage not being in control of everything. Not everything is going to go to plan, and that’s OK.

You have to learn to go with the flow. The Oxford dictionary definition of this is “be relaxed and accept a situation, rather than trying to alter or control it.” This has been one of the many lessons I have learnt from having Crohn’s.

So things don’t always go to plan?

Does it really matter if I don’t send that work email, or do the dishes?

Of course not.

The important thing is to look after yourself. Sometimes when you are ill, you have to put yourself first. You make the most of the good days and do what you can when you are feeling well, and you don’t worry or beat yourself up on the bad days when you can’t do as much.

Of course the bigger things, like life plan, matter more. Sometimes these have to change, and that’s OK too. That’s not to say you can’t live out your life’s dreams or fulfill your goals. Realistically though, you may have to change your time line or even adapt your plans slightly. That might actually be a good thing! Honestly, having Crohn’s and ostomy surgery was a wakeup call for me. I had to put major life plans on hold, which I grieved at the time, and it took me a long time to accept. As it turns out though, I ended up doing something even better! Other things I was still able to do exactly as I’d hoped, just a little later than I planned. And some things that I thought were exactly what I wanted in life changed. Priorities changed.

The opposite of going with the flow is being inflexible, rigid, stiff and unadaptable. I don’t want to be those things. I don’t have to (in fact it’s impossible to) have power over everything. I still like to have control of my life, but I’ve accepted that not everything has to go according to plan, I can adapt and be more flexible, and still have a beautiful, fulfilling life.

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