This week marks the beginning of Crohn’s and Colitis Awareness Week, which runs from December 1 to December 7, 2023. This initiative seeks to raise awareness about the daily challenges faced by individuals living with inflammatory bowel diseases, particularly Crohn’s Disease and Ulcerative Colitis. These conditions are characterized by painful inflammation and sores in the gut, leading to a range of debilitating symptoms.
According to Crohn’s and Colitis UK, symptoms can include cramping, diarrhoea, swollen joints, mouth ulcers, fatigue, and significant weight loss. As part of the awareness campaign, a TikTok influencer known as letstalkcrohns shared five critical insights he wished he had known before his own diagnosis of Crohn’s Disease. His insights aim to provide support and understanding to others navigating similar challenges.
Key Insights from a Crohn’s Disease Patient
In a video that has resonated with many, the influencer emphasized that flare-ups of Crohn’s Disease encompass more than just gastrointestinal distress. He stated, “Flare-ups aren’t just urgent bathroom visits or stomach pain. I didn’t expect to have joint pain, fatigue, fever, or brain fog. It’s a whole body thing and not just your gut.” This highlights the often-overlooked systemic effects of the disease.
Addressing misconceptions about appearance, he noted, “People will assume that you don’t look sick, and this is so frustrating. Just because it’s invisible doesn’t make it any less real.” This sentiment reflects a common struggle among those with chronic illnesses, where external appearances do not always convey the internal challenges faced.
On the topic of diet, he clarified that managing Crohn’s Disease extends beyond merely avoiding trigger foods. “It’s not just about food,” he explained. “I used to think that just avoiding trigger foods would be enough, but stress, poor sleep, and over-exertion all play a massive part in your wellbeing.” This perspective encourages a holistic approach to health and wellness.
He also discussed the realities of treatment, noting that frequent hospital visits may become routine. “Not every treatment might work for you the first time. It’s a process of trial and error, having patience, and finding a solution that works for you.” This emphasizes the need for a personalized approach to managing the disease.
When discussing the concept of remission, he pointed out, “Remission doesn’t mean that you’re going to feel 100 percent better. Hopefully you have good days, but you’re still going to have bad days.” This insight underscores the importance of ongoing management and realistic expectations for those living with chronic conditions.
He concluded with a reflection on the learning curve associated with Crohn’s Disease, stating, “I wish I knew a lot of this sooner, but honestly, how are you supposed to know?” This statement resonates with many patients who often feel unprepared for the complexities of their diagnoses.
Community Responses and Support
The video has sparked a significant response from the TikTok community, with viewers sharing their own experiences. One user commented, “Took me two years to find the right medication for Ulcerative Colitis. Been in a flare since last November and I’m only just starting to come out the other side.” This illustrates the lengthy and often frustrating journey many face in finding effective treatments.
Another viewer expressed frustration with the common misconceptions about the disease, saying, “I could not have worded this better myself. So sick of seeing posts and the first thing they talk about is how much they go to the toilet. It’s so much worse and more than that.” This highlights the need for broader awareness of the multifaceted nature of these conditions.
Furthermore, one participant advised prioritizing mental health, stating, “Place your mental health first. It’s a lot harder to do that than the physical. There will be a light at the end of the tunnel, even if it’s small victories at a time.” This underscores the importance of psychological wellbeing in managing chronic diseases.
As Crohn’s and Colitis Awareness Week unfolds, individuals and organizations are encouraged to share their experiences and knowledge. For more information about the ongoing efforts and resources available, visit crohnsandcolitis.org.uk.
