diagnosed with crohn's disease: managing treatments, support and resources
here’s how you can manage a crohn’s disease diagnosis.
10 minute read
a crohn's disease care team could include nurses, gastroenterologists, surgeons, pharmacists, and other medical professionals working together to offer a multidisciplinary approach to your care.
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canada has the highest number of irritable bowel disease cases worldwide. the sheer prevalence of the disease should make access to care a priority, but there is still some disconnect between the care people need and the care they receive.
navigating the system in canada can be a challenge, but there are steps a person with crohn’s disease can take to make the transition more seamless.
over 320,000 people live with ibd in canada every day. among those, roughly half have crohn’s disease. according to forecasts, those numbers are expected to increase significantly in the coming years, and approximately 1.1% of the canadian population will likely have some form of ibd by 2035.
the high prevalence rates of crohn’s disease and other forms of ibd should be a cause for concern when it comes to access to care because, currently, the medical system is not fully armed to handle the influx of new patients who require proper ibd treatment.
barbara currie, a nurse practitioner with crohn’s and colitis canada, has worked in the ibd space for nearly two decades and has a front-row seat to the challenges and roadblocks for access to care.
“there is a limited number of gastroenterologists, and there’s a high number of gastrointestinal referrals, so the volume of referrals to gis is massive,” she said.
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since the number of patients requiring care far exceeds the number of gastroenterologists and specialized ibd nurses, long wait times are one of the most significant issues when navigating the healthcare system after being diagnosed with crohn’s disease. “if it’s just suspected ibd, it’s just not enough. you could wait six months to a year before you get in the door, and that would be the best-case scenario. you could wait three to five years,” currie said.
crohn’s disease is also highly complex because it can present differently from patient to patient. people have varying degrees of damage, symptoms, and progression. these unique characteristics of crohn’s make it that much harder to find proper care because what works for one person may not work for another. research investigating access to care for those with ibd has found that a multidisciplinary approach is the best possible avenue when treating patients with crohn’s disease.
here’s how you can manage a crohn’s disease diagnosis.
arm yourself with the (proper) knowledge about crohn’s disease
there is plenty of information on the web surrounding crohn’s disease, but not all of it paints the correct picture of what it’s like living with the disease or what a person can do to help combat symptoms.
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typically, there are good sources and bad sources. blogs and other personal accounts of crohn’s disease may be interesting to read and provide a sense of connection to others, but they are not the way to go when you want to read up on the disease and all it entails.
“everybody has an opinion on something,” currie said about patients researching ibd on their own. “it’s important to go to accurate sites for literature on ibd and resources. crohn’s and colitis canada is dedicated to providing research and education to patients and is the largest patient advocacy group in canada for ibd. there are other resources in canada, too, like badgut.org and cdhf [canadian digestive health foundation].”
when learning about all things crohn’s disease, you want to make sure that you’re not taking personal journeys with ibd as a fact. it can be a dangerous and slippery slope that can skew your ability to see treatments and therapies objectively. “if you’ve got a group of 20 people that have a negative experience with medication, that’s only 20. but there may be thousands of people on that medication, and it’s working for them.”
it’s also important to ask the right questions. “if you google the dangers of taking biologics therapy, the internet is a pretty smart place. it’s going to serve you up what you’re looking for. you have to know how to ask the question, particularly when asking online,” said currie.
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it’s vital to know that, while there are risks associated with any medication, asking the internet to highlight those risks will only give you half the information. you need to navigate internet research from a place of both the positive and negative. being able to do so will provide you with a clear picture of your disease, what treatments are available, and what you may be in store for as you continue with your ibd journey.
discuss crohn’s disease treatment plans early and often
currently, many viable treatment options are available for crohn’s disease, with more on the way. they are split into several categories and given to patients depending on personal factors. there is no “one-size-fits-all” medication, and that can make treating crohn’s disease that much more challenging for medical professionals. when you are first diagnosed, it’s vital to speak to your ibd team about all your options for your specific case.
“some people may have a scarring component, and some people may have penetrating disease,” currie said. “everybody’s phenotype of crohn’s can be very different, even within families. each patient’s journey is unique.”
because of this, exploring all options is a great way to determine which would work best for you based on your ibd team’s recommendations and your own knowledge of the good and the bad about each medication. “i think it’s very individualized and situation-specific,” currie said.
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the severity of your crohn’s will also play a role in your therapy route. “let’s say you’re newly diagnosed and have been feeling unwell for the last five years. clinicians will discuss options. do you have to make the decision that day? no, absolutely not,” currie added. “i think it’s important to have shared decision-making so that the options are discussed, and it’s a mutual decision made together. at the end of the day, the patient is the one that has to take the treatment, so you have to be given time to explore the risks and benefits.”
knowing what treatments are available and what you’re willing to try early on will also keep your disease from progressing further into harmful territory. in many cases of crohn’s disease, you will have time to consider all your options. but you also want to make sure that you treat it as early as possible so that it doesn’t get worse.
“there’s real risk in doing nothing,” currie said of the adverse effects of various therapies. “many medications, even advil or aspirin, have adverse effects, but we don’t think about it. we don’t give it a second thought because it’s a mainstay therapy.”
when it comes to crohn’s, knowing your options and beginning the therapy that you and your ibd team think will work best for you is a great way to reach remission quickly and safely.
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stay connected to your crohn’s disease care team
your crohn’s disease care team is the group of medical professionals you work with to help manage your condition. they could include ibd nurses, gastroenterologists, surgeons, pharmacists, and other medical professionals working together to offer a multidisciplinary approach to your care. when newly diagnosed with crohn’s, it’s essential to put together this team to ensure that you are covered from all bases when treating, managing, and navigating life after a diagnosis.
“there’s a team of people that work with a specialist—a team of nurses, psychologists, dietitians,” currie said. “it isn’t just one person you will have to work with, but many to get the proper care because no specialist can cover all the aspects of care when a person has crohn’s disease. since the disease itself is so multi-faceted, treating it has to be as well.
currie also suggests that you “stay connected with your ibd team. know how to contact them and update them quickly if your symptoms change.”
by doing so, you can tackle any issues that arise during treatment head-on so that any worsening of your disease can be hindered by proper care.
the ccc and the canadian ibd nurse group have also developed a one-page conversation guide that allows patients to focus on what’s important during their conversations with their medical team.
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“it could be quite useful when you’re first diagnosed when trying to develop that rapport with your clinician to help understand what’s important to you, how you’ve been feeling, the impact of your ibd on social and intimate relationships,” currie said of the conversation guide. “sometimes those are difficult conversations to have.”
by using this type of resource, you can guide your conversations during appointments so that all your concerns are addressed in a timely manner.
take advantage of crohn’s disease resources outside of your medical team
while building a medical team to turn to when treating and navigating your life with crohn’s disease is vital, it’s also important to remember that there are other resources available to you that can make your journey with ibd that much easier.
resources could include sites like crohn’s and colitis canada (ccc) and the european crohn’s and colitis organization (ecco). these sites offer information on the disease, local chapter information for people to connect and get involved with others who have also been diagnosed with crohn’s disease, and information on up-and-coming therapies.
“they have excellent guidelines on the management of ibd. person’s with ibd can find a whole array of information related to treatments (and) support groups,” currie asserts.
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local chapters are great resources, and anyone diagnosed with crohn’s disease should plan to reach out to these places. people often underestimate the power of connection, and when newly diagnosed with a life-changing disease, it can be easy to want to avoid others at all costs. but that would be a mistake.
studies have investigated the power of support groups and connecting with others having a similar experience with crohn’s disease and found that “elevated social support may favourably affect the clinical course” of crohn’s disease.
“if i was diagnosed with crohn’s, that’s where i would start—going to local chapters,” currie said.
get comfortable with your crohn’s disease
there is often a self-imposed stigma surrounding crohn’s disease and other forms of ibd because of the nature of the symptoms that people experience. it can be challenging to come to terms with being diagnosed and knowing what the future may hold in terms of flare-ups, remissions, treatments, and possible complications.
currie said that some people with crohn’s disease are not at all affected by a new diagnosis, and it can be somewhat of a relief to know that there is something wrong. “i think that people with crohn’s have lived with such significant symptoms for so long that their baseline of good health is adjusted. people with crohn’s are stoic. they deal with a lot, and they accept feeling okay. maybe they don’t know what feeling great feels like because they felt so unwell for so long.”
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of course, that isn’t the case for everybody. knowing that something is physically wrong may help turn the page towards relief, but it doesn’t make managing the disease any easier regarding the shame and embarrassment that many with crohn’s feel. “i’m in the business of poop. i make light of it, but those conversations don’t come easy in the moment. having a bowel accident, for example. how do you talk about that? that’s a real-world thing with ibd,” currie said. “oftentimes, they [patients] are talking about things they may have never talked about, like bowel habits. we’re not usually having day-to-day conversations about our bowel movements, which make them unnatural and uncomfortable at first.”
getting to a certain level of comfort when speaking about your crohn’s disease and how it affects your life will be different for everyone. still, when navigating life after a diagnosis, it’s crucial to do so as quickly as possible so that you can speak freely about what you’re going through to your medical team and other supports.
seek out mental health resources early
many people with crohn’s disease also struggle with mental health distress because of their symptoms and their new diagnosis. having to accept the fact that you now have a lifelong disease to manage is more than enough to cause a mental health disorder to develop or worsen. when dealing with the news of a new crohn’s diagnosis, it’s vital to focus not solely on your physical symptoms but your mental ones as well.
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“the message has been loud and clear from people with ibd,” currie said about the correlation between mental distress and crohn’s disease. “you may find that you have a lot of distress around worrying about whether or not you’re going to have another flare. many patients worry, ‘what if i get hospitalized again?’ and you go down the rabbit hole.”
studies have found that people with crohn’s disease and other forms of ibd are more likely to live with both anxiety and depression because of their disease, which only leads to more issues when navigating care because they now have to find mental health therapies on top of their current treatments for crohn’s disease.
the best way to combat that is by seeking out mental health resources quickly after being diagnosed with crohn’s disease. since the correlation is so high, and access to mental health care in canada can also be challenging, ensuring that you have this type of care lined up can keep things from worsening over time.
“it is nice to work with a clinical health psychologist who understands the nuances of living with ibd, which is perhaps more comforting. getting those resources through peer support groups is always a good mental health support. connect with other people who have ibd who might be experiencing similar situations,” currie said.
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living with crohn’s disease is no easy feat, but when you arm yourself with the knowledge needed to navigate the system, it can make managing your ibd journey much less challenging.
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