Coping | IBD | Information
I was diagnosed with Crohn’s when I was 10 and am now 27. Needless to say, my disease is a major part of my life and has impacted me in so many ways, both positive and negative. When I was first diagnosed, I remember being scared and thinking that I was dying. I was so thin and sickly looking and felt awful on a daily basis for months. As a 10 year old, I dealt with enormous pain, hospitalizations, numerous tests/scans, medications, colonoscopies, etc. Being that young and having to face something so difficult was really terrifying.
Going through high school with Crohn’s was especially tough, trying to fit in with my peers and act like I could do everything that they could when in reality I couldn’t. I worried about how I would feel every time I stayed at a friend’s house. I needed lots of down time and rest when it seemed like the rest of my friends could be on the go 24/7. I felt self-conscious for having a special pass in school to use the bathroom whenever I needed to. I was embarrassed that I had to go to school late a lot of mornings for feeling sick, or for having to miss a party or event because of Crohn’s. I didn’t even want to take my pills, because I was a teenager and no one else I knew needed to take 10+ pills per day. It might not sound like much now, but as a teenager it felt like the end of the world to be different.
My parents and I were always worried about how college would be for me. As an only child, I’m really close with my mom and dad. They were also my security blanket when it came to my Crohn’s, so it was scary to think of what life would be like without them in the event that I had a flare up or needed to go to the hospital. I ended up going to school 2 hours from home, far enough to have some independence but close enough in the event that I got sick. Fortunately, the first few years of school were great since I was in remission. My disease was well managed by taking pills every day. At the end of my junior year, however, I ended up hospitalized with a partial bowel obstruction. After that, I needed to travel back and forth from school to home for Remicade infusions.
Once I graduated, I moved back home for grad school. Remicade was a lifesaver for me for a while until my second year of grad school, when I ended up developing antibodies to it. As a result, I developed drug-induced Lupus and had times where it was hard to even get out of bed. I was exhausted all the time and in more pain than the usual day to day chronic pain of having Crohn’s. Enter Humira! Humira helped to get my body back under control and in remission for a few years.
During this remission, I finished grad school, planned a wedding and got married, bought a house and landed a great job. All was well until August 2017 when blood-work showed that I had now developed antibodies to Humira. From there, I ended up with obstructions, abscesses, a fistula, recurrent infections, etc. all within a 5 month period. 4 hospitalizations and countless medications later (including the dreaded Prednisone ugh!), I ended up needing to have a bowel resection this February. The surgeons were thankfully able to reconnect me successfully without having to attach a colostomy bag.
Recovery was tough, but since then I have been feeling amazing. I’ve been fortunate to have the support of my husband, my parents, family and friends and a great staff of surgeons and physicians. The course of my disease has been a rollercoaster, a few years here and there of feeling relatively healthy followed by periods of agony and struggle. Despite all of the negatives I’ve encountered, I try to see the positives in it all. I’m an incredibly strong and resilient person and I like to thank Crohn’s for that.
In grad school, I studied clinical mental health counseling and am now a Licensed Mental Health Counselor in New York State. I believe that all of my struggles have led me down a career path of wanting to help others. Given that I’ve struggled myself for so long, I think I have a unique perspective on compassion and understanding.
I currently work in integrated care as a behavioral health consultant, meaning I work with primary care physicians in helping to treat patients with their overall health. We work as a collaborative team to address both physical and emotional needs of patients. Physical health and emotional health are 100% interrelated and who can better understand that than someone who has an autoimmune disease?!
Anyone with Crohn’s can relate to the feeling of having their symptoms triggered by stress or anxiety. I know that stress and anxiety have been a major issue for me my whole life. Any time I have a lot on my plate, am not getting enough sleep or am worried about something in particular, I can guarantee that I am not going to feel well. I was never great at coping with it myself until I started working in the field of mental health and began developing a deeper understanding of ways to manage it.
Stress is a major part of our culture. I would say that at least 99.9% of the people I see for counseling are experiencing some level of significant stress whether it’s working a million hours per week, running around taking care of others, constantly being attached to their phones, not getting enough sleep and running on caffeine, etc. We live in a crazy busy world and we are not all great at recognizing that and caring for ourselves. If you have an autoimmune disease, it’s even more crucial that you work on self-care; whatever that may mean for you.
For me, I love spending down time with my husband, my cat and my family. I love refinishing vintage furniture and decorating my house (this is extremely therapeutic for me!). I even recently started a décor blog on Instagram just for fun (follow me @eclecticowl if you’re on the gram!). I love painting, drawing, crocheting, etc. Anything that is hands on is a great stress relief for me!
On a day to day basis, I take care of myself by drinking a ton of water and making sure I eat 3 full meals per day. I try to walk on lunch breaks to get fresh air for at least 20 minutes, or walk when I get home if I don’t have time during the day. I also stick to a strict sleep routine and am in bed by 10 PM every night, even on the weekends if I can. I use the Calm app on my phone every day for stress relief to practice deep breathing, muscle relaxation, meditation, sleep hygiene, etc. I highly recommend it!
Living with the chronic pain and struggles of Crohn’s has left me in a negative place at times, particularly this past year when I was in and out of the hospital so many times. I started to feel hopeless and found myself crying a lot out of frustration, which is crazy for me because I have never been one to cry! I thought of what I would say to one of my patients and I began reflecting on the positive things in my life. As I get ready in the morning and as I go to sleep each night, I try to think of all the things I have to be grateful for and it helps to put me in a positive place.
As a therapist, I preach about the importance of talking to people about how you feel. Ironically, I myself have never been the best at this and I think it’s due to the fact that I’ve had to be so tough my whole life. However, I am learning that it’s so important to get things off your chest and to talk about what you are going through. Having an autoimmune disease, even when it’s in remission, is difficult every single day. Having a support system is crucial and I think Girls With Guts is such an awesome outlet and resource for so many people who have a shared experience!
Thank you for letting me share my story with you!
Laura Marvin has been diagnosed with Crohn’s disease since she was 10 years old. She’s currently a Licensed Mental Health Counselor (LMHC) living in Clifton Park, NY. Outside of work, she loves spending time with her husband and their adorable fur baby, as well as the rest of her family. She also loves DIY projects, home decor and doing anything crafty!