I live with IBS and Crohn’s Disease.

23 August 2021

For people who live with Crohn's or Colitis alongside irritable bowel syndrome (IBS), it can be difficult to determine the cause of symptoms and, therefore, manage them.

Franchesca tells us how she does it and what life is like for her with Crohn's and IBS.

I’ve been living with Crohn’s for a decade now, thanks to one brilliant doctor sending me for a CT scan. I remember the consultant’s kind face when he told me I had the condition but all I heard was that I had a lifelong illness with no cure. This is what made me break down into floods of tears.

Before meeting this doctor whilst I was at university, other professionals closer to home kept telling me that I had irritable bowel syndrome (IBS) and no tests were undertaken. They said that years of excruciating tummy pains, bloating and trips to the toilet in the middle of the night were due to IBS.

It turns out both doctors were correct. I have Crohn’s and IBS.

Living with Crohn's and IBS

But to be honest, I’m still unsure how to tell the difference between the two. What I’ve heard recently is that IBS symptoms are functional, which means there’s no obvious physical cause, whereas Crohn’s symptoms are organic. Organic means that my Crohn’s symptoms can be explained by measurable changes, such as inflammation, and observed through medical tests.

Is it Crohn’s or IBS that’s causing the painful bloat and constipation? Is it Crohn’s or IBS that dislikes dairy, wheat, red meat, and fatty foods?

My pains switch from the bottom of my stomach to, on other days, just above my belly button and around my back.

But what pain is caused by IBS and what is Crohn’s?

I have IBS with constipation so I either can’t go to the toilet, or my stools are hard droppings and I’m left feeling like I haven’t completely emptied my bowels. Thanks to years of straining, a pain now shoots around my pelvis and down my thigh when I’m blocked up trying to go to the toilet.

Admittedly, I ignored my diagnosis for years once I had it. I continued eating what I wanted, drinking as little as two cups of squash a day, and not exercising. I wouldn’t admit to myself that anything was wrong. I refused to let it take over my life but, in all honesty, the words ‘lifelong illness with no cure’ petrified me.

I was in utter denial, not wanting to talk about my symptoms or anything related to poo due to sheer embarrassment.

I longed to be like everyone else and be able to eat what they did. I still throw a childish strop when I crave food I can’t have, and I can be incredibly lonely living with these invisible illnesses. I’ve tended to retreat inwards, thinking “would anyone even believe me when I was in pain?”. I looked fine from the outside and would even paint on a smile pretending to be okay until the griping pain was unbearable. I imagined others rolling their eyes thinking, “she’s once again complaining about a new pain today” and “she’s boring”. Or worse, romantic partners questioning whether they want to keep putting up with my low moods and constant symptoms.

One day, I finally decided to listen to my body and figure out what it liked and didn’t.

I’ve learnt my conditions hate stress, skipping meals, certain foods, and tight restrictive clothing. Even with a fashion background, I’m still learning about bloat-friendly clothing. It’s like I’m dressing a new body I’ve just been given. My conditions love litres of water, exercise, a routine, deep breathing, sleep, ‘me time’, and comfy clothes. That’s how I tend to manage them.

I’ve had several hospital stays due to either a Crohn’s flare or awful constipation. Two days after having my daughter in 2020, I had pains that felt similar to contractions. I hadn’t been for a poo or even passed wind for a week so I was sent back to the hospital to have an enema. The doctor called my bowels “sluggish”. And when I asked if that’s good, he simply answered, “no”.

I’ve experienced deep anxiety from needing the toilet NOW and not being able to find one; looking unrecognisable with ‘moon face’ from steroids; breathing through the pain and longing for a seat to curl up on whilst standing up on a tube journey. And throughout my life, I’ve struggled with my body image dating back to when my first symptom reared too long after my diagnosis.

How my tummy looked or wondering when symptoms would unexpectedly kick in would always be at the back of my mind.

I’ve always been slim, but I’d slip on a dress and immediately turn to the side to examine how my stomach looked. I’d go out and a wave of paranoia would wash over me. I’d stare enviously at other girls in dresses and look down at my expanding tummy to compare. “Why doesn’t my stomach look like theirs?” I'd ask myself.

Since I gave birth, constipation has been the worst. By evening, my tummy bloats so much that I look 9 months pregnant again. And through the night I’m tossing and turning, shoving a pillow underneath my stomach to get comfortable. My bloat usually reduces overnight but by morning I’d find myself staring into my wardrobe. My confidence would plummet just from trying to decide what to wear, knowing my tummy will expand throughout the day. I’d cover myself up in baggy T-shirts, a hoody and gym leggings, desperate to hide the bloat.

But I’m trying to educate myself on my conditions in between hospital appointments. I’ve recently developed a fascination for the gut-brain axis [link] and how we should start seeing them both as one. Since learning about how much the gut and brain communicate, I realised I was stuck in a symptoms-stress-symptoms cycle. Instead of hating my illnesses and verbally bullying my tummy I’ve slowly learnt to talk kindly and ask it what it needs, whilst thinking about what I haven’t given it that day.

Does it need more water? A walk? Relaxing breathing because I’ve been stressed? Or does it need me to simply curl up on the sofa with a hot water bottle? 

I do wish there was more information about living with both an IBD and IBS. Back in 2018, I started my blog to give a voice to those who haven’t found theirs yet. I share my experiences with others suffering to be able to relate and feel less alone. I want to help raise more awareness for these invisible illnesses.

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