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Today the Crohn’s and Colitis Young Adult Fellows joined together to share what they’ve experienced as an IBD patient during this global pandemic. So we asked our fellows how they have been affected by the pandemic as IBD patients and this is what they want to tell you!
“Thankfully, I’ve not had too many problems during the pandemic. My IBD is relatively well controlled at the moment, but I still fall in the group of people in England who are strongly recommended to stay at home, because I am immunosuppressed. Therefore, I haven’t taken any chances. I was able to get my medications delivered to the house, and I now have weekly food deliveries too - though trying to get a slot is harder than you think! My regular follow-up appointments at the hospital have been cancelled until further notice, but I am doing okay at the moment so there’s no need for their input. I have the IBD helpline and email address should I need them - but hopefully not! The only other problem I’ve had is arranging for my three-monthly vitamin B12 injection, which I’ve had for around 10 years due to malabsorption. My surgery has deemed this ‘non-essential’, and are only injecting those with consistently low levels. Clearly, I don’t fall in that category, because I’ve been on regular treatment for so long. They have suggested oral supplements which I would need to buy myself, but the problem of malabsorption - so the supplements are unlikely to be of any benefit.”
Simon Stones
“Though I am not on any immunosuppressive medication, I have felt heightened awareness of the fact that I have an autoimmune disease and an overactive immune system in general. When I realized how serious the pandemic was, my anxiety spiked not only because of the reality that was to come but regarding how many people dismissed the repercussions of proper, careful social distancing or #stayinghome. I was lucky that I was able to communicate with my GI provider and get refills of medications I use during flares and on a regular basis without having a last-minute visit. I only leave my house for essential needs such as groceries (once per week max), prescriptions or to get out of the house to exercise so I can regroup physically and mentally.”
Rachael Whittemore
“As someone who is immunosuppressed, I have been experiencing heightened anxiety because of the pandemic. I have been fortunate to work from home and have the privilege of having family nearby that can transport my groceries to me, but that being said, I still feel the fear and frustration upon seeing the news every day and knowing that there are many people who are not taking this as seriously as I feel they should. I began isolating before the quarantine was in full swing, because of my compromised immune system, and have only been in public to go to the pharmacy drive-in (while wearing a mask of course!). I am trying to channel my anxiety into healthy outlets, such as my art, to avoid prompting a stress-induced flare. All I feel that I can do at this time is stay at home.”
Lucy Laube
“As someone with IBD who’s living in a developing country, the major challenges stem from the lack of robust health infrastructure. Thankfully, I’m not in a flare and neither am I on any medication. However, I do have an ileostomy which requires constant maintenance. I have been facing difficulties in acquiring bags and other components of my ostomy. Luckily, I was able to procure a small amount of these components before the lockdown, but at an inflated rate. I’m also having difficulties procuring basic things like cotton and micropore tape. This keeps me in a constant state of anxiety. I am constantly checking apps to see if I can get the essentials at reasonable rates. Additionally, there is no easy access to any form of basic healthcare in case of an emergency, and that makes me nervous.”
Nikhil Jayswal
“To already live in a body and in a life that inherently holds so much unknown and vulnerability when it comes to my health, and to have that sense of uncertainty that constantly exists within myself now amplified throughout the world, to have that unknown intensified to this extent, has brought even more challenges and emotions to the surface. It feels like the unpredictability that comes with living life with a chronic illness has multiplied tenfold. I am immunosuppressed, and the only time I have gone anywhere except for my house or my backyard was to get blood work taken to check on my levels. While every precaution was taken in doing so, and it is a privilege to have such access, it was still an anxiety-ridden experience. I am incredibly grateful that I am not currently flaring and that I have the ability to be in contact with my GI provider through telehealth services, but I think it’s important for people to realize that IBD doesn’t just “stop” or “slow down” during a pandemic.”
Rachel Straining
“As someone who is immmunocompromised due to the medications I am on, I am always cautious of when I go out and am in large groups of people. With the pandemic, this caution has increased tenfold. I am fortunate enough to be staying with my parents right now. They go grocery shopping so that I do not have to go to the stores. I limit the number of places I have to go. When I do go out, I wear masks and gloves. I come home and immediately put my clothes in the washer and take a shower. I sanitize everything that I buy. When I’ve had to go for my infusions, I have to go through multiple check points to ensure I do not have the virus. All of my doctor appointments have been virtual. Although my health is not perfect right now, I am thankful to not be flaring like I was at this point last year, as I was in the ER every couple weeks. While the rest of the world seems to want to jump into reopening, I get anxious thinking about the ramifications of opening too soon. I cannot control how anyone else responds to this and who follows quarantine and who does not. But I can continue to do my part and stay at home.”
Samantha Rzany
“When you live with a chronic illness, you’re often forced to make compromises for your health. You have to take on a second job as the captain of your health. Since the pandemic began, navigating the healthcare system has become more difficult and uncertain. Chaos is a part of any illness that remits and flares, but when chaos is the defining state of the global world, it can cause undue stress. Personally, I’ve had to postpone doctor’s appointments, and alter my treatment plan to cope with our new reality. It’s been difficult to choose not to participate in activities I enjoy doing, like socializing with friends, but I know that I have to make sacrifices to protect my health and the lives of others. While I cannot eliminate all risk, I am trying to minimize my stress and focus on what I can control. I am taking precautions, such as wearing a mask, and going out for only essential needs. The entire experience of the past few months has brought health to the forefront of the public’s attention. I am hopeful that it will improve the public discourse on chronic illness, and lead to more resources in the health sphere. After all, public health is a collaborative effort, and not an individualistic one.”
Grady Stewart
As someone who is immunocomproised, I carry around the stress of potential sickness anxiety with me. Before the pandemic, I have always been transparent with people in my life about my need for them to stay clear of me if they are not feeling well . This advocacy that I was working on getting good at is now amplified x3. My remicade appointments have carried on, first I couldn’t bring anyone now I am allowed to and it’s back to normal. I feel isolated and lonely but thankful for my roommates who keep me company and my cousin who drives me to the grocery store. For me, it has been a major trigger to have the topic of conversation constantly be of health and healthcare. My hope is that this will bring a new normal. That together we can collectively make workplaces schools etc more accessible for all and that there is now a general awareness and understanding for the immunocompromised community.