Guest Writer Lindsay Talks About the Importance of IBD Nurses

With any chronic medical condition comes a certain amount of fear. Especially when it comes to medical

problems which are prone to peaks and troughs. For a lot of people, that’s exactly what IBD is. You have weeks, months, maybe even years of nothing, and then – BAM. It hits you, and you’re back on the toilet. All. The. Time.

The fear comes from not knowing when that ‘bam’ is going to come along.

I’ve been ‘in remission’, in the words of my very kind and talented consultant, for a good couple of years now. My ‘bowel movements’ (17-year-old me is thinking, ‘kill me now,’) are fairly regular and under control, there’s no bleeding to write home about, I’m only ever in pain if I eat red or processed meat or a lot of pastry (Gregg’s is my nemesis) – overall, I’m doing pretty well.

But even though I’ve been given the r-word, the IBD team at the hospital are happy with me and my blood results are always normal, apart from slightly low iron levels, I live my life just waiting on something going wrong.

Take the last few weeks for example. I’ve lost a lot of weight. As soon as this happens, the warning bells start going off.

“I’m dying, aren’t I?” I mumbled to myself as I stepped off the scales. I’d lost half a stone in a fairly short space of time. In my head, it was Crohn’s. It was over. I could see the steroid prescription in my mind already.

Add onto this the slight twinge of pain I had on my lower right side, round about where my surgery scar marks six-and-a-half years since a small bowel resection. Warning sign number two.

Then there was the leg lumps. Another weird and wonderful Crohn’s symptom which I seem to get. ‘Erythema nodosum’ is the clinical name for this one, meaning red nodules. Basically, when there’s activity in the bowel, it causes these lumps to form on your legs. I don’t get understand either. I learned a long time ago to just accept whatever Crohn’s had to throw at me, because if I started questioning it, I’d go insane. In the last couple of months, I’ve had two delightful red lumps appear on my left leg, hard and hot and angry, causing my ankle to swell up. A great look in the summer months. Especially when coupled with a facial expression which reads: “Oh my God. I’m having a FLARE UP.”

So there I was, convinced that this was the end. I completely disregarded the fact that the weight loss could be due the fact that I’ve been incredibly busy at work and forgetting to eat regularly. (Rule number one – never forget to eat if you can eat.) The pain could’ve been explained by dinner out with a friend, a combination of indigestion and my stomach being delighted that I was actually feeding it something more substantial than a shop-bought salad and half a packet of crisps. And, I’ll admit it; I was a touch on the stressed side, (rule number two – never go for a job in journalism if you want to avoid stress), which can sometimes make the old leg problems flare up, according to my mate Dr Google.

But I ignored all of this logical thinking, and I called my brilliant IBD nurse. I’d just had my bloods done, so was calling for results (which were surely going to scream, “YOU ARE HAVING A MASSIVE FLARE UP LINDSAY!”), but I was ready to start wailing down the phone at her about all my symptoms and tell her that I’m doomed, DOOMED, and possibly start whimpering about not wanting another colonoscopy before she had time to even say hello. But her familiar, reassuring voice made me ask about the results first. And she told me, no, everything’s fine – just your folic acid that’s low, but we’ll get you on a supplement for that.

So I’m relatively healthy. Despite my best efforts in my head, I’m pretty normal (first time for everything). And hearing that, medically, there was no reason why all of this should be Crohn’s-related, I rationalised it all. But I have been reminded of a few things.

Know your own body. It’s really important to be aware of any changes, whether it’s a bit more bloating than usual, going to the toilet more or less frequently than you would do normally or weird stuff like your legs doing insane things or a twinge of pain in your belly.

Look after yourself. This is one I’m rubbish at. Eat as well as you can. Stick to what you can eat. Take the supplements and vitamins if you need them. Get plenty of sleep (I never do). Don’t let stresses get on top of you. And, basically, don’t give your body any excuses to have a meltdown. I’m thinking of taking up yoga. I have this vision of myself being some sort of Zen queen who floats around in cheesecloth dresses with my hair flowing free like Blake Lively’s, ensuring I stay in remission forever and ever. It’s never going to happen, but a girl can dream.

And lastly, IBD specialists are the best. If I had had a problem, a real problem, my local IBD nurse would’ve been able to help. In the last year, she’s dealt with wobbly voiced phoned calls from me twice, when in the throes of Crohn’s induced panic. “I’m bleeding!” I wailed. “I can’t have a flare up! I have a magazine going to print!”

On both occasions, cool as a cucumber, she told me that she was pretty sure it would be nothing because a) she knows me and she knows I’m bordering on hysterical at the best of times and b) she’d seen my blood work lately and it was all fine, but she booked me in for a scope within days and had me hand in some samples. She also managed to arrange it around work, which was good of her.

Not everyone has access to IBD nurses. Crohn’s and Colitis UK’s most recent survey found that one in five people don’t. This is, quite frankly, outrageous. These specialists are so, so important to people with IBD. Whether it’s for medical treatment, reassurance or just something to answer ridiculous questions, they’re amazing. Anne-Marie, who I go to see every eight months now, is genuinely lovely, very down-to-earth, so reassuring and won’t let me panic, even if I really want to. I’m really lucky to have access to her. And, to be honest, it’s made me reluctant to move out of this area, because I know that there’s no guarantee that I’d have this great clinic system elsewhere.

So keep calm, IBD sufferers. After all, there’s that old rumour that stress and worry makes this thing worse. If you have got access to an IBD nurse, make use of them. They’re there to make sure you’re OK. And if you don’t have one? Get involved with Crohn’s and Colitis UK to see how we can get the ball rolling to make sure everyone has access to this vital resource.