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what it feels like: crohn’s disease ‘doesn’t define who you are’
8 minute read
this year, nesrine aboulhamid is one of 15 canadians who has earned an ibd scholarship for her passion and commitment to her studies and her health.
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heading back to class can be overwhelming for students with new timetables, homework expectations, and navigating social circles for friendship and support. but when you have a chronic disease with debilitating symptoms, the challenges of back-to-school are even more difficult.
nesrine aboulhamid, a 23-year-old montreal student, has inflammatory bowel disease (ibd), a lifelong condition of unpredictable fatigue and stomach pain, in her case. she had her first surgery from complications when she was 17, and understanding the complexities of the disease influenced her career path. she graduated as a registered dietitian and is now starting medical school at mcgill university – intent on raising awareness and making a difference for people with ibd.
“no one really knows what [ibd] is and that’s surprising because it touches so many people. i didn’t know what it was until i actually got diagnosed with it,” she says, adding her interest in food and nutrition has helped her cope, providing another tool to her treatment alongside drug therapy. “i’m always going to need medication, but it’s not the only thing that i can do to better my health. i changed my diet to integrate as many plant foods as i can.”
understanding crohn’s disease and ulcerative colitis
crohn’s disease and ulcerative colitis are the two main forms of ibd, which develops when your immune system attacks the lining of your gastrointestinal (gi) tract, harming your ability to digest food and excrete waste. crohn’s can happen anywhere on your gi tract from mouth to anus, and it’s most often found in the colon or lower part of the small bowel.
and while there’s no cure and no exact cause yet determined, factors have been linked to genetics and family history, the environment, including air quality, food additives and early-life antibiotics, and the gut microbiome, where people have an imbalance in the usual makeup of gut bacteria swirling inside. a growing body of research has shown the impact of food on the gut microbiome in ibd.
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the disease is more common than you might realize. one in every 150 canadians has ibd, which is diagnosed at any age, but has a typical age of onset in 20-somethings, according to crohn’s and colitis canada. the organization released a 2023 impact of inflammatory bowel disease in canada report to address the increasing number of people with ibd and improve access to care.
abbvie ibd scholarship from crohn’s and colitis canada
for over a decade, crohn’s and colitis canada has awarded post-secondary grants as part of the abbvie ibd scholarships program, helping students with ibd to realize their academic goals. this year, aboulhamid is one of 15 canadians who has earned an ibd scholarship for her passion and commitment to her studies and her health. she’s also an active peer support mentor with crohn’s and colitis canada.
“i wanted to be able to connect with someone from the crohn’s community, to make friends and to share things that i’m experiencing that sometimes i have no one to share with. i wanted to receive that, but i also wanted to give that to others as well,” she explains. “we talk about how we can overcome the challenges and still pursue everything that we want. that stems from first a conversation. and the conversation stems from this willingness of yourself to be vulnerable and to accept the care of others.”
first sign of ibd symptoms at 17 years old
for aboulhamid, it all started with extreme fatigue when she was 17. she didn’t have other common signs of ibd, like abdominal cramps, extensive diarrhea, blood in the stool or joint pain, but she did have constant fatigue. she had graduated high school and was starting quebec’s two-year post-secondary cegep program before university, excited about her academic future.
“i was always waking up and never feeling rested. i was going to school and then coming back and needing to nap. i was also drinking lots of coffee to stay awake and to really stay on top of my schooling,” she says. “so i didn’t feel the best, but i didn’t think too much of it. i felt that was just the next steps of becoming an adult or what it meant to study hard that you’re always going to be tired.”
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as many people do, aboulhamid simply carried on, relying on caffeine and the stimulating challenges of courses in biology, chemistry and physics that diverted her attention from her body’s warning signs. but when she experienced fever and pain, her parents took her to the er, where she was diagnosed with an abscess, a mass filled with infected pus. while abscesses can be complications of crohn’s disease from inflammation in the wall of the intestine, they can also be caused by other infections.
she was sent home with a prescription for antibiotics and told to return if symptoms persisted.
“that was a pretty terrifying and scary experience, especially as a young teenager, it’s like the first health challenge that you’re experiencing in your life, and also not knowing what caused this,” she says. “like, did i do this to myself? could i have prevented this? and not knowing what’s the next step for that. if i broke my arm, i’m going to be in a cast for two months, but here i don’t know what it is or if it’s going to go away or create other complications.”
an upcoming chemistry exam was also on her mind, causing further stress, she says. “you need to study because if not, then your whole life or your whole career is messed up because you’re not going to get the grades to go into the program of your choice. so there’s this big fear for your own health, but also these other fears of your usual life that take place on top of that. because you don’t know how you’re going to manage all of those at the same time.”
dealing with a crohn’s diagnosis
with no improvement, the family returned to the hospital a few days later and aboulhamid was admitted for surgery to drain the abscess, followed by three days in hospital to recover. there was no apparent cause and plan for follow-up, so she was sent home without any explanation and a wound that needed daily attention to clean and bandage at an outpatient clinic. the routine turned into an unexpected two-month ordeal.
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in fact, the wound wasn’t healing and she developed a complication of the surgical drainage called a fistula, a small tunnel that can form through parts of your intestine and connect to other sections of intestine, to the skin or to other internal organs, notes crohn’s and colitis canada.
“you’re not supposed to have abnormal vessels connecting in your body because that creates a new route for more infections, for even more malabsorption from bad bacteria and other complications,” explains aboulhamid, who has become well-versed in her experience of ibd. “so that was caused because there was too much inflammation. if you don’t correct the inflammation, you’re not going to heal.”
three months later, she has another surgery to insert a seton, which is a thin silicone string to help the fistula drain and heal. again, because she didn’t have any of the more common symptoms associated with ibd like the extreme diarrhea and blood in the stool, doctors didn’t consider ibd as a possible cause of her illness.
she ended up in hospital for a fourth surgery a few months later to drain another abscess that had formed. at this point, she was referred for a colonoscopy and further blood tests which led to her diagnosis of crohn’s disease – which in many ways, came as a relief to know what was going on.
“i was praying that i would be diagnosed so that i could have a treatment plan and not be in this uncertainty of what’s next month going to look like and if i’m ever going to be able to hold onto a job and if i’m going to be able to walk because you can’t do any physical activity after surgery,” she says. “and there’s the emotional strain. so for me, it was better to be diagnosed with an incurable disease.”
she started on corticosteroids to decrease the inflammation directly along with two different drugs, an immunomodulator and a biologic, that change the immune system so it works more effectively. while she felt better as time went on, another abscess developed that had to be drained. still, aboulhamid had faith in the treatment plan and focused on other things to bolster her health and immunity, like getting enough rest, preparing healthy meals at home and pursuing her goals.
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“i was always fascinated by how something you do every single day like simply eating could impact and be a predictive factor for so many health conditions and for so many chronic diseases that could in part be reversible or at least better managed,” she says. “and when i experienced all of these challenges with my crohn’s, then my career route became more clear. i knew i was not going to go into something other than health.”
living with crohn’s disease
today, five years later, she hasn’t had any further complications or surgeries, and is happily in remission. she goes to a clinic near her home for an infusion of a biologic drug every eight weeks, has regular blood and stool tests, and is diligent about healthy eating, rest and activity while managing her studies at mcgill. she also is passionate about helping others like herself with ibd, promoting self-advocacy and support.
“we may be young, but we are never too young to be brave and informed. if you don’t understand a certain symptom or diagnosis, ask questions. this is your own body, make sure you’re receiving the best care possible,” she says.
for students, she recommends reaching out to your office of student affairs to see what you could be eligible for, asking for more time during exams if you need to use the bathroom or possible extensions for assignments when you’re in periods of symptom flare-ups. most importantly, stay positive.
“remind yourself that even if you go through some pretty tough moments, crohn’s disease or ulcerative colitis doesn’t define who you are, it’s just part of you. if you have a certain goal, gather the info you need and look for the resources available. you never know what you can receive or achieve if you don’t ask or make the first step.”
if you’re experiencing any unusual symptoms, talk to your healthcare provider to get help. for more information and support services, visit crohn’s and colitis canada.
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karen hawthorne is a toronto-based writer.
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