“I wish I could say something positive about living with Crohn’s disease”- Lesa’s story
Please note that this personal story reflects the individual experiences of the author. If this raises any difficult feelings or concerns for you, please know that support is available. You can contact Crohn’s & Colitis Australia’s Helpline on 1800 138 029 and press option 1, or reach out to our IBD NurseLine for confidential support and guidance from a specialised nurse, by pressing option 2.
My name is Lesa, and I was diagnosed with Crohn’s disease in 2015 at the age of 37. To say it was a complete shock is an understatement. I had heard of Crohn’s disease, but I had absolutely no idea about its extremely challenging symptoms and the devastating—and constant—effects it would have on my life.
I have now lived with Crohn’s disease for over ten years, and it has negatively impacted all aspects of my life in ways I could never have imagined: my physical and mental health and well-being, my daily functioning, my diet, my social life, my daily routines, my parenting, my relationships and friendships, my hopes and dreams, and my ability to make future plans of any kind due to the relentless and unpredictable nature of the disease.
One of the things that I have found the most challenging (aside from the horrific pain and constantly feeling like you have food poisoning) is grieving the loss of my health on a daily basis and wishing I could be the ‘Lesa’ that I was pre-diagnosis—a person who was healthy and had energy on tap whenever it was required and who could eat any food and share meals with others without potentially devastating consequences and who could plan and go on holidays and day trips.
I miss being carefree and being able to be spontaneous—two things that Crohn’s has completely robbed me of. My family has not been on a holiday of any kind since my diagnosis in 2015—booking accommodation in advance is simply impossible when you don’t know what your Crohn’s is going to throw at you in the next hour, let alone months from now. I also need to be in close proximity (less than a few meters) of a toilet at all times, which makes me completely incapable of leaving the house, much less going on a holiday involving car or air travel!
Another extremely challenging aspect of living with Crohn’s disease is the out-of-this-world physical and cognitive fatigue that it causes.
I regularly have days where I struggle to walk from my bedroom to the kitchen and have to hold on to the furniture and walls because my body is unable to produce the energy required for ‘normal’ functioning. I now have to use a shower chair, and I often use it when I brush and floss my teeth, as my body is unable to produce the energy required to stand up to perform these essential self-care tasks.
I have to conserve my energy and ‘spend’ it extremely wisely—every day I am constantly having to make countless decisions about what to prioritize with the very limited amount of energy that my body is able to produce. For example, washing my hair uses up nearly all my ‘energy quota’ for the day, and there is nothing ‘left in the fuel tank’ for anything beyond the absolute essentials of going to the toilet and feeding myself.
The effect that the disease has had on my eating habits has been equally devastating.
I am a person who has always loved food, and going to cafes or restaurants with family or friends was always a source of immense pleasure and deep connection for me. I now can only eat about 15 foods (a few fruits and vegetables along with chicken, salmon, and well-chewed nuts). All other foods cause extremely distressing—and potentially life-threatening effects.
Connecting over food with loved ones through shared meals is such a fundamental part of enjoying and enriching life—I grieve deeply for this aspect of life that I have been cut off from for more than a decade. It is an intense and painful loss that you really cannot understand unless you have lived experience of it.
I deeply miss the luxury, privilege, and sheer dumb luck of living in a healthy body that functions properly and allows me to do both the things I need to—and wish to—do. This is one of the most devastating losses for me—living in a body that is constantly letting you down and making you feel like a burden, coupled with always being on edge and living in a constant state of dread as you have no idea what might lie ahead on any given day. Crohn’s disease is absolutely relentless—you never get a ‘day off’ from it.
In December 2019, I had a life-threatening bowel bleed—it occurred completely out of the blue and was a very traumatic experience. Following this bleed, I was started on a biological therapy medication called infliximab, which I initially received via infusions every six weeks, requiring travelling three hours and being at the surgical centre for about five hours to receive my infusion—an exhausting and unpleasant all-day affair.
I now use a pre-filled pen that I have to inject myself with every two weeks in my thigh. I used to also take an oral medication called azathioprine, but my gastroenterologist took me off it after I was diagnosed with breast cancer in September 2022—I assume because azathioprine is a known carcinogen.
Since my Crohn’s diagnosis, I have also been diagnosed with another autoimmune disease—a chronic kidney disease called IgA nephropathy, which may progress to end-stage kidney disease (i.e., kidney failure), requiring a kidney transplant or dialysis. I have learnt that being diagnosed with an autoimmune condition increases your likelihood of developing another one—something that has definitely played out in my own life.
Another very challenging aspect of living with Crohn’s disease is that it is a very lonely, isolating, and alienating disease.
It makes you feel completely cut off from everyone else—like you are living on a different planet from the rest of the population.
Nobody wants to hear about abnormal bowel movements filled with blood and mucus, and they certainly don’t want to hear about having red and black blood gushing out of your rectum every 10 minutes throughout the night while being pumped full of IV steroids and clotting medications to try to stem the blood flow.
They don’t want to hear about the colonoscopy that your gastroenterologist was unable to perform because your bowel was STILL completely full of blood—even after bleeding profusely all night long—and then having to experience the horror of drinking colonoscopy prep solution in the hospital and having it blast its way through your still bleeding, raw bowel so that your gastroenterologist can perform a successful colonoscopy.
They don’t want to hear that every time you have a bowel movement. You dread looking in the toilet bowl to check the consistency of your stool and to see if blood or mucus are present. They don’t want to hear about the constant fear of your disease progressing to the point where you may need surgery or a stoma. I could go on, but you get the picture.
This loneliness, isolation, and sense of alienation that Crohn’s disease causes have increased dramatically since the start of the COVID pandemic. As I am in the high-risk category for serious complications from COVID due to being immunocompromised from my Infliximab injections, I rarely leave my house except for my endless medical appointments and blood tests.
I wish I could say something positive about living with Crohn’s disease, but in my experience, there are no positives to living with this debilitating disease. The only positive (and it’s a HUGE one) is that I have a wonderful, compassionate husband who does his upmost to support me in every way possible—and for that, I feel truly blessed, as I couldn’t imagine living with this horrendous disease without him by my side.