Dealing With a Crohn’s Flare Up – Who Should I Tell?
I’m writing this post as I’ve recently returned from a trip to the hospital to see my IBD specialist. Discussing my current condition and Crohn’s flare up has led me to realise what a terrible year it’s been for managing my CD.
A bad bad year
This year I’ve suffered some of the worst flare ups I’ve experienced in a long time, some lasting for over a month. One of the main reasons I decided to get more seriously into running was I was fed up with how the year was going and refused to let it beat me.
Let’s talk about poo!
(WARNING The following may contain some descriptions some readers may not want to read whilst eating)
You have to very quickly get used to talking about poo and bodily functions with a disease like Crohn’s. Let’s face it, we will be discussing it with various doctors, nurses, partners, random people on the internet on a regular basis.
With this particular flare up I had horrendous bleeding whenever I went to the toilet. Sometimes my, let’s call it movement, was nothing but blood and I thought I might end up shitting myself to death.
There was also lots of mucus present, which is hard to properly describe in mere words. It’s kind of like a slug has held a dinner party in your bowls, and all his/her friends were invited!
Coupled with the stomach cramps and pains. Law-defying fatigue. A general overall feeling of life is shit (quite literally). Due to all of this, I was not in a good way for some time. This lasted all of April and part of May making it one of the longer flare ups I’ve suffered since my initial diagnosis.
Previous flare ups have lasted a week or two but were more frequent in nature. So perhaps as I’ve not had one in a while old CD was making up for it with this one.
This is what Crohn’s does, it leads you to a false sense of security. Thinking you might have it under control and then bang, it reminds you who’s boss in no uncertain terms. Just par for the course with CD I’m afraid.
What did the Doc say
While talking about this with my Specialist Doctor he asked me a question that I hadn’t considered. Taking his notes he asked me who I contacted when I was having the Crohn’s flare up. Nobody was my obvious (to me) reply. Why? Well, I just thought what was the point. It’s not like anyone is going to give me a miracle pill to make it go away.
He looked at me like I was a Wookie with a lightsaber, “You’ve got to let your IBD nurse know so she can support you with anything you might need. Plus If you ever need a doctor they will almost always ask whether you have been in touch with your specialist”.
Build up a picture of your disease
This was something I always thought pointless, I just suffered alone, always. The more I think about it, however, the more I can see the sense in it. Even just to have someone to talk to for advice and support. Someone who knows about the disease and has at least a small idea of what I’m going through. I can see how it helps you and the doctor build up a better picture of how CD is affecting you. Maybe help narrow down certain triggers.
So I’ve decided that next time, and theirs always a next time, I will contact the doctor or nurse. Even just to let them know that I’m suffering a flare up. Put what I’m suffering into words. Which in itself this will be good medicine, after all, it’s one of the reasons I write this blog.
The more I think about it the more I think it’s good advice for those of us who have always taken that English stiff upper lip approach, gritted our teeth and carried on alone.
Dealing with a Crohn’s flare up – Simple advice to follow
Next time you’re going through the horror of a flare up send a message to your nurse or doctor if you don’t already. What harm can it do?
The process of articulating your illness and what you’re going through is good practice. As a result, it allows your doctor to build up a record of your condition which may help them to advise on any future decisions on treatment.
I’d love to know your approach to a Crohn’s flare up. Do you inform anyone or have you, like I did, always suffered in silence on your own? Will you now take a different approach to the next reprise? Please comment below.