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ibd is a serious autoimmune disease that affects the whole body – and the mind
but the challenges this chronic condition poses to individuals’ mental health often go unaddressed
“there’s a misconception that ibd is just a bathroom disease,” says chantel wicks, who lives with the condition. supplied
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while the disease chantel wicks has lived with for 18 years has sometimes tested the limits of her physical endurance, she says the mental and emotional challenges it’s presented have been much greater. wicks, 37, who now lives in pickering, ont., was a 20-year-old university student juggling a full course load and four part-time jobs when a rapid decline in her health — including experiencing extreme pain and severe blood loss — hit a crisis point and finally drove her to the emergency department.
for a couple of months prior to going to the hospital, wicks had experienced worsening symptoms that she felt too embarrassed and scared to have investigated or even talk about. she was frequently gripped with excruciating pain, but it was the blood loss that alarmed her most.
“when i went to the bathroom, there was a lot of blood,” wicks recalls. she’d delayed seeking care because, “what was happening to my body was terrifying and unknown,” wicks says. plus, “there’s a stigma. we don’t talk about what happens with our bowels.”
soon after that er visit, wicks was diagnosed with inflammatory bowel disease (ibd). “i had no idea what it was,” wicks says.
ultimately, she would learn that ibd is an umbrella term covering multiple diseases — the two major conditions being crohn’s disease and ulcerative colitis.
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wicks believes that many people are as much in the dark about ibd today as she was back then, despite the fact the disease currently affects an estimated 322,600 canadians with that total projected to grow to 470,000 by 2035.
“there’s a misconception that ibd is just a bathroom disease,” says wicks. while diarrhea and abdominal pain are certainly among its symptoms, that’s a fraction of the story. not to be confused with irritable bowel syndrome (ibs) — which shares some of the same symptoms as ibd but does not cause permanent harm to the intestines — ibd is a chronic autoimmune disease in the same category as lupus and rheumatoid arthritis, and currently it has no cure.
in the digestive tract, ibd can cause problems ranging from mouth ulcers to frequent vomiting, malnutrition due to poor nutrient absorption and anemia from internal bleeding.
but ibd can have effects elsewhere in the body, as well. for example, it can bring bone-deep fatigue, which is often difficult to combat, even with extensive rest. as a result of this chronic fatigue, plus pain, wicks says she and her husband live in a bungalow, because “four to five days out of seven, stairs would be impossible for me.”
while managing the burden of this disease, which includes staying on top of appointments and treatments, those with ibd live with never-ending uncertainty. wicks says every minor pain brings constant worry of a new escalation in symptoms. further, sudden, unpredictable symptom flares can derail planned activities.
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the symptoms of ibd can come on suddenly, “i’ve had to miss important life events involving my family and friends because at the last minute, i’ve been too unwell to attend,” says wicks. “that weighs heavy.”
for wicks, finding treatments that work has also been an ongoing struggle. “i’ve been on far too many medications to count,” she says. “for me, they work for a period of time, and then they stop, which means i need a new treatment plan.”
such stressors undoubtedly contribute to the fact mental health issues such as anxiety and depression are 1.5 to two times as prevalent among people with ibd compared to the general population.
additionally, according to a new survey, 300,000 reasons why, that revealed insights into how ibd affects daily life for canadians, 63 per cent of canadians living with ibd report they have experienced mental health issues due to the disease. eighty-four per cent agree there is not enough understanding of the impact of ibd on one’s mental health.
but the relationship between ibd and psychological distress is more complex than it might seem, says dr. yvette leung, a vancouver gastroenterologist who specializes in ibd. “it’s not as simple as making the connection that your disease is flaring, so you’re not feeling happy,” she explains.
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some studies suggest that stress increases the odds of symptom exacerbations, and research has also revealed a two-way relationship between gut and brain health.
“if you’re lucky, you can pay for therapy, or you have insurance that covers a set number of sessions,” says dr. leung, “but the majority of patients do not have any access.”
dr. yvette leung is a vancouver gastroenterologist who specializes in ibd. supplied
at least half of the patients dr. leung would refer for such a consult report having no family doctor. the shortage of family physicians stands in the way of timely referrals to specialists for diagnosis and treatment, too. recent studies show patients can wait up to six months from symptoms onset to receive an ibd diagnosis.
“it’s a problem that’s not unique to ibd, but it impacts ibd very much,” dr. leung says. “at every part of the journey, there’s a barrier, and it starts with primary care.”
wicks was fortunate to get diagnosed relatively quickly compared to many others with ibd. “many people seek medical attention and are dismissed or misdiagnosed with other acute conditions,” says wicks. “it can take months (or longer) before they are properly diagnosed.”
while she continues to experience flares, she hasn’t let that stop her from living a full and busy life. on top of working full-time, she volunteers with crohn’s and colitis canada and enjoys activities like camping with her husband and dog.
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learning about her own disease so she could make informed decisions in partnership with her health-care team has helped her mental health. regular visits with a mental health professional with a background in treating individuals with ibd also play a crucial role in wicks’ self-care regimen.
“this is not something anyone should ever do alone,” she says. “but absolutely, number one for me was just getting better about talking about ibd. i couldn’t expect my colleagues, family, friends or health care team to understand what i was going through without me telling them.”
to learn more about the challenges people living with ibd experience, click here.
this story was created by content works, postmedia’s commercial content division, on behalf of takeda canada inc.
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