Why we need to talk about our bowel movements

When Flic Manning was just 13, she began experiencing debilitating symptoms. It took nine years to finally receive a diagnosis of Crohn’s disease, during that time she said she endured medical trauma and bullying that took her to her lowest point.

When I think back to my high school years my most pervasive memory is one of anguish.

Instead of enjoying secondary school, I spent most days in incredible pain. On top of that I had to deal with medical professionals questioning my illness, some even going as far as to suggest I was making it all up. And on top of that I was forced to endure fairly relentless bullying from fellow students who would call me weak, pathetic and accuse me of being too sensitive.

All of this left me with pretty severe mental ill health, including obsessive compulsive disorder, depression, anxiety and at my lowest, I was suicidal.

I now know I have Crohn’s disease, a type of inflammatory bowel disease (IBD). It most commonly occurs in the small intestine and the colon but it can affect any part of your gastrointestinal tract, from the mouth to the anus. It causes inflammation that can result in some pretty severe symptoms. And I’m not alone, one in 250 people have this.

Where it all began

It was at the age of around seven when I first began to experience mild symptoms of what I now know to be extra intestinal issues. Once I hit puberty, at around 12 years old, those symptoms increased and I began getting chronic headaches, rashes and other skin conditions all over my body. I suffered rapid weight loss, and experienced a heightened period of anxiety and insomnia as well as all-over body pain. Eventually these symptoms progressed to nausea, diarrhea, constipation, at times there was mucus and blood in my stools, I developed food allergies, ulcers in my mouth and nose – basically my body was going into complete meltdown.

While at school I would often have to run out of the classroom to go and vomit. Or I would be outside in tears as I tried to deal with the incredible pain I was experiencing.

My parents sought immediate treatment for me. Unfortunately, like most chronic illnesses, it took years to obtain a correct diagnosis. I was misdiagnosed with many different things, including Crohn’s disease, a diagnosis that was quickly retracted. I spent years being shuffled from one specialist to another and at almost every appointment the diagnosis changed. Unlike a broken bone, which is easy to see and fix, Crohn’s is invisible and awareness of this issue among medical professionals is still fairly low.

I suffered what is now known as medical trauma – as I was told by some medical professionals that it was all in my head, or that I was being a burden to my family. Amongst other things, this caused me to develop post traumatic stress disorder and it became triggering for me to see specialists or set foot in a hospital.

Finally, some nine years after my first Crohn’s diagnosis, I was officially diagnosed with it again. My feelings about having the illness were right and I was finally given the medical backing.

I felt vindicated that finally my illness was recognised, but I was unbelievably angry that it had taken so long, and that my original Crohn’s diagnosis had been retracted. I was also angry that I’d gone through all these treatments that had actually made me sicker.

Living with Crohn’s

Unfortunately there is no one size fits all approach to treating Crohn’s. What works for some, doesn’t work for others. For me personally, I have found that my body responds better to more holistic treatments. However, I still experience certain issues on a daily basis such as widespread body pain, rashes and brain fog. The reality for me, and for others like me, is that there’s not a single day of my life that I don’t wake up in pain – it’s just varying levels which tell me how functioning I can be.

When I look back on my experience as a teenager there is a great sense of sadness for what I endured. I wish I could say things have improved since then, but unfortunately I know that’s not the case. There are 13 and 14-year-olds sitting in hospital right now experiencing what I experienced. They are still not being believed. I know these people exist because I hear their stories every week in my work as a holistic pain management and mindfulness facilitator.

To really change the situation it’s essential that we speak about these issues to erase the stigma.

By 2022, it’s expected that more than 100,000 people will be living with Crohn’s disease and ulcerative colitis in Australia alone. But there’s still so much we don’t know about it. This is because one of the symptoms is poo, and people feel embarrassed or ashamed to speak about their bowel movements.

But enough is enough. People like me shouldn’t have to go through life just surviving, we should be able to live with the same quality of life as others.

May is Crohn’s and Colitis Awareness (CCA) month which offers an opportunity for people living with Crohn’s or ulcerative colitis to share their experience to increase the wider public’s understanding of the diseases. Those living with the diseases can get involved in CCA’s ‘You’ve Got Guts’ campaign.

Image by silviarita from Pixabay