Michelle Pickens, 30, was diagnosed with Crohn’s disease in 2015 when she was 23 years old. Crohn’s disease is an inflammatory bowel disease that causes persistent inflammation in any portion of the gastrointestinal (GI) tract, however the small intestine and colon are the most typically affected.
It is unknown who is most prone to get Crohn’s disease or the best method to control it, making it a life-altering diagnosis. In Pickens’ instance, it took a long time. She has had a variety of symptoms for as long as she can remember, beginning with irregular bowel movements and nausea as a toddler. Those symptoms remained throughout Pickens’ adolescence and college years, and she began to suffer from severe exhaustion.
To make matters worse, physicians informed Pickens that her anxiousness was causing her health problems. When her symptoms became so severe in her early twenties that they interfered with her employment and social life, she began to push for a proper diagnosis. Pickens is now at a point of acceptance, having learnt what she has to do to live her best life with Crohn’s disease. Here’s her story, as related to Claire Gillespie, a health reporter.
I saw several physicians before receiving my diagnosis. One even told me I was “the healthiest patient he had seen all day,” despite the fact that I was vomiting many times each day. I discovered my current gastroenterologist’s clinic a few months later and was formally diagnosed with Crohn’s disease. My current illness was in a “blind zone” in my intestines, so neither a conventional colonoscopy nor an upper endoscopy could detect it. It required a capsule endoscopy—a tiny camera resting in a vitamin-size capsule that you ingest so your doctor can better examine your small intestine—to discover the harm Crohn’s has created in my body.
After being unwell for so long, receiving a diagnosis was a relief since it meant I was finally getting answers and could begin a treatment journey that would hopefully help me feel better. It also made me feel validated: all those years of unexplained problems had a medical explanation, and they weren’t “just anxiety.” But I was also disappointed to learn that I had a chronic disease. Crohn’s disease is a complex illness that develops differently in each individual. It was difficult for me to accept the fact that therapy would not be simple.
Other symptoms I suffered from were joint pain, exhaustion, and cognitive fog, to mention a few, so my treatment approach included symptom management as well as treating the underlying issue. I still struggle with the changes in my body, but I’ve come to terms with my Crohn’s disease diagnosis over the years. Everyone’s path is unique, but this is what helped me.
Finding an understanding community online
When I was initially diagnosed, none of my friends had Crohn’s or anything comparable, and I hadn’t heard anything about it in the media. Most of my Crohn’s disease family members were diagnosed after I was, so I felt quite alone.
I ultimately resorted to the internet to locate other individuals going through similar experiences. I discovered a vibrant, compassionate community on social media, notably Instagram. I was able to connect with others who were experiencing similar difficulties, discuss views and questions about treatment plans, and form emotional bonds with individuals who knew what it was like to live with this disease. This was quite beneficial to me following my diagnosis, and I always urge that anyone newly diagnosed with Crohn’s establish a community to whom they may turn for assistance.
I’m trying to be more adaptable with my food and lifestyle.
Following my diagnosis, I experimented with a variety of dietary adjustments to see if they may help alleviate my symptoms. Because there hasn’t been a one-size-fits-all answer for me, I modify my diet based on how I’m feeling.
When I was originally diagnosed with Crohn’s, I tried an elimination diet (which you should do under the direction of a doctor or a nutritionist) to determine whether there was a specific item that was causing symptoms. Certain fruits and vegetables aggravated my symptoms, and how they were cooked also played a role. Gluten-containing products worsened my symptoms, so I followed a gluten-free diet for years, which seemed to help. During a flare-up, I would also stick to a watery diet to make foods more digestible.
I drank alcohol in my early twenties, at breakfast, during happy hours, and in wine evenings. Now, I only drink wine when I want to indulge in a little liquor. As with food, I simply have to go with the flow and discover what feels good.
My body altered dramatically after delivering my kid in 2020, so there are new things that annoy me, and gluten is back on the table for me to eat. Because I’ve learned that adaptability is essential, I’m continually reassessing how something makes me feel. Finally, I’ve discovered that stress and lack of sleep are the most significant triggers for me.
In my medical path, I am practicing patience.
It hasn’t been simple to find the correct Crohn’s therapy, so I’ve had to be patient and realize that it would be a trial-and-error process. When I was initially diagnosed, I began taking antibiotics as well as anti-inflammatory medications such as steroids. None of them worked well for me, so I began taking a biological drug, a series of injections given every six weeks or so. After almost a year of trying without much success, my doctor transferred me to a new biologic medicine administered by intravenous infusion. I’ve been getting this therapy every six to eight weeks for more than five years, and it’s been the most successful thus far. I intend to keep it going for as long as possible.
I also take my mental health seriously, which has helped me manage my Crohn’s disease and feel at ease. I go to therapy on a regular basis to help reduce stress and anxiety and to help me deal with the uncertainty that the disease brings into my life.
Being truthful about my limitations
Dealing with Crohn’s disease’s unpredictable flare-ups was much more difficult in my 20s when I had a vibrant social life and worked in an office. At the time, being sick in public or having to disappoint people, whether friends or colleagues, gave me a lot of anxiety. I’m much more comfortable talking about my health now. I work entirely remotely, I identify as handicapped with my job so that they understand if I require adjustments, and my friends and family are all aware of my status so that I don’t feel pressured to cancel arrangements.
The most difficult thing for me right now is not being able to be there for my son when I am unwell. Therapy has also helped me get over my “parent guilt” and pushed me to focus on my support system so that I can show up for myself and others.
Accepting my body for all that it is capable of
My body transformed in a variety of ways following my diagnosis. Due to erratic weight gain or loss, unexplained illnesses, and just not working as I desired, I frequently felt like it wasn’t my own. I still have a lot of trouble with this, but I work through it in therapy and on my own.
As someone who has previously suffered from an eating issue, I strive to embrace all of the wonderful things my body can accomplish. Having my baby made it much easier for me to adopt this perspective. The pregnancy and delivery were difficult, but watching my body create something so miraculous gave me hope. For years, I concentrated on what my body was doing wrong—and for once, Crohn’s illness and all, it was doing something great.
For clarity, this interview has been trimmed and condensed.
Erin Balsa is a highly skilled and knowledgeable health journalist with a passion for educating the public on important health and wellness topics. With extensive experience in both traditional and digital media, Erin has established herself as a trusted voice in the field.