Acceptance in IBD: Not a Straight Path
A diagnosis of inflammatory bowel disease (IBD) is often not a straight path. In fact, misdiagnosis and delays are common. On average, it takes approximately 4 months to receive a diagnosis of ulcerative colitis and 9 months for Crohn’s disease.1
As you establish care with a medical provider, you will likely have a physical exam, blood work, invasive medical procedures, and eventually discussions about treatment. Sometimes your treatment begins in an emergency room due to the severity of your symptoms. Each individual with IBD will have a unique story about the beginning of their disease.
Initially, one is experiencing bothersome digestive symptoms that can impact them physically and emotionally. At symptom onset, there is much uncertainty and this can lead to valid worries.
From the beginning, all roads point to the fact that IBD is complex and you will likely need a strong support system to manage the peaks and valleys of this lifelong disease.2
Diagnosis of Crohn's or UC received. Now what?
When I am working with a patient with IBD, we talk about when they were diagnosed and what that experience was like. I tend to think of someone as “newly diagnosed” within the first 3 years of their diagnosis. Here’s why:
Because of those delays and hospitalizations, much of the first couple of months to a year, are spent working through the initial diagnosis and trying to determine a treatment plan. You are establishing care with a gastroenterologist, potentially trying different medications, and maybe even undergoing surgery. The whole period can feel like a blur.
While it can take time, the goal is to get you feeling better and eventually into remission. Even though physical symptoms may begin to improve, the various experiences of being newly diagnosed with a chronic disease can be overwhelming, scary, and frustrating.
It is also common to feel anxious about the future and how to manage it all. Some of these realities don’t fully settle in, until year 2 or 3. Normalizing these emotions and learning ways to process them, can lead to resilience and healthy coping skills essential to managing the emotional and physical aspects of IBD.
Awareness of the Stages of Grief in IBD
Given the complexities of IBD, it is not uncommon for both the person with IBD and their loved ones to experience aspects of grief during the early years of an IBD diagnosis. Quite frankly, you can experience grief at any stage of the disease.
Commonly at the time of diagnosis, after a hospitalization, upon learning you aren’t in remission, or during a time when your disease has impacted you in terms of school, work, or personal life.
Examples of the Stages of Grief
Denial: “I’m sure this isn’t that big of a deal. I’ll be fine.”
Anger: “Why me? What did I do to deserve this?”
Bargaining: “If I just do everything the doctor says, I am going to get symptoms under control.”
Depression: “They tell me I am in remission, but I still feel exhausted. My energy is low and I just don’t feel like doing anything. No one understands what it is like to have his disease.”
Acceptance: “Sometimes I don’t feel the best, but, if I take things at my own pace and listen to my body, I can still participate with my friends and family. I recognize I have a good support system and even though I won’t feel 100% every day, I appreciate it when I do feel well.”
Is it normal to feel this way?
Knowing that cycling through the stages of grief early in your diagnosis is normal can help the healing process and validate the emotions you are feeling. It is important to share your emotions with your medical providers and ensure that you have access to a mental health provider if needed.
Given the various complexities of managing a chronic disease, there may be times when you are more prone to symptoms of anxiety or depression. Working with a mental health provider can give you tools to manage those aspects of the disease through talk therapy, relaxation interventions, and stress management. Therapy is also an ideal place to work through these stages of grief.
Acceptance is knowing you are not alone
As you come to learn skills to manage your disease, you will likely find that a team approach is helpful. That team can include a primary care physician, general GI provider, IBD specialist, mental health expert, nutrition provider, and more.
An important part of finding acceptance for your disease is knowing that you don’t have to manage it alone. With the right team in place, you will gain confidence that when you need assistance you will know who to turn to!
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