Jessica Caron

@jessica-caron-2 | contributor
For nearly a decade, I’ve managed life with Crohn’s disease, an inflammatory bowel disease (IBD) and Interstitial Cystitis. I’m passionate about sharing my experiences in life, loving, and work with chronic illness.
Jessica Caron

What I've Learned About Life With Crohn's Disease

Knowing I’d be hitting double digits since my diagnosis with Crohn’s disease has caused me to spend a lot of time reflecting over the past few months.  After spending so many years focused on getting to a future that was bright and disease-free, it’s a little weird to look back at the journey. Along the way, I’ve experienced fear, sadness, anger and pain, along with determination, personal growth and a constantly fluctuating battle between finding peace with my diagnosis and a nagging desire to be “normal” (whatever that is). Now that a decade has come to a close on managing this disease, I’ve found that these are the top five things I’ve learned along the way: 1. I can reach personal goals and live successfully with Crohn’s disease. First and foremost, I’ve learned that I truly can take on new challenges and accomplish goals while managing this disease. But, it hasn’t always gone how I’d hoped it would. To make things happen, I needed to completely change my tactics on how I defined and approached goals. Two major themes for success have played out: I’ve needed to build in very flexible expectations for myself, and I must focus on gradual progress as a measure of success if I want to keep my spirits up along the way. I’ve been able to hike and travel again – a personal goal I set from the start – but, I had to learn to love smaller hikes (and sometimes just simple walks around the block) and domestic travel at times when I’m not well. I’ve needed to accept “two steps forward, one step back” as progress made, and I’ve needed to remind myself that breaks in progress are not failures as long as I know that I’ll try again as soon as I’m able. As a result of this approach to goal-setting over the past decade, I was able to get married, have children, go to grad school, develop a love of public speaking and advocacy, and am now embarking on a new career in healthcare. 2. I cannot control this disease. Try as I might – and oh, how I’ve tried – I’m not in control of this disease. I like to make contingency plans for the management of symptoms of all sorts, but as soon as I think that things are figured out, some new manifestation of symptoms comes along which blows my contingency plan to smithereens. At first, this was the single hardest thing for my type-A brain to accept about Crohn’s. I had to be in control. Well, I’m not. I’m smart, savvy and capable. At times, I feel like the MacGyver of managing symptoms. But I’m not in total control of this disease. I can’t decided how and when symptoms appear. I’m ever-ready for them, but I don’t have a Crohn’s disease crystal ball. Accepting this fact has been huge in how I mentally manage my journey with this disease. As corny as it may sound, what I am in control of is how I accept this disease… which is and will always be a work in progress. I’d also be remiss if I didn’t mention that I have control over how I work with my clinician to manage this disease. Realizing that I can (and should!) partner with my doctor to have some measure of control over how we make treatment decisions has been invaluable as we continue to review treatment approaches together to set and reach goals. While the disease itself may not be totally controllable, smart disease management may help coax the disease to remission. Optimizing my doctor’s ability to manage the disease through treatment requires my participation in treatment decisions and external lifestyle factors that may at least try to tame the beast. 3.  Remission isn’t what I expected. I needed a blood test, scope and MRI to confirm that I was in remission before I would believe it. Even afterwards, I was mad in some ways. Why wasn’t I feeling as good as I had when I was 20 and running around my college campus, before the disease first appeared? I really had to talk myself through the way that age, chronic inflammation, depleted nutrition, the mental anguish of disease and the resulting scar tissue would change my body forever. Remission has never been what I expected. It’s even more confusing for those around me. If I’m in remission, why am I still tired from time to time? If I’m in remission, why are some days… off? For anyone else feeling let down by remission, I’m with you. The personal journey to accept, appreciate, manage and maximize remission has been just as involved in some ways as the journey to manage active disease. 4.  This life-long experience is best when shared with others who “get it.” For years, I had a handful of friends who really knew what I was dealing with. There were many aspects of the disease I mentioned to no one. Managing disease meant hours of solitude in a bed with my best friend, Netflix. When I mention shows I’ve seen over the years, I’m occasionally told “wow, you watch a lot of TV,” which stings as a little reminder that so much of this battle is had alone. Over the past few years, though, my circle of friends with Crohn’s has grown to a satisfying group that brings such joy and humor to many aspects of day-to-day life with the disease. When I’m let down, scared or depleted, they lift me up. And when I can be an ear or offer some advice, some of my experience seems worth it. 5.  Overcoming disease-related challenges has forever changed who I am for the better. This last point has been my most recently appreciated and hard-fought lesson with the disease. For years, friends have commented that I manage the disease well, and others who know nothing of my health have mentioned that I’m an “old soul” or that I seem to have good “life perspective.” While this may be true in some ways, I’ve fought the notion that any aspect of this disease could have possibly brought a positive change in me, as if I would have been a different person if I didn’t have the disease… but it’s true. A part of me still hates saying this because I do not want to have this disease. If a magic pill would make me disease-free forever tomorrow, I would take it. Hands down. I hate the thought of this illness sidelining me from taking care of my kids, getting to work and being with family and friends. But I look back on my ability to be kind and patient with myself. I think about the fact that I am incredibly open to admitting that I know nothing of what others challenge every day. I think about the way that life obstacles don’t seem insurmountable anymore. And sure, some of that perspective will come with age, but a lot of it has come as a result of the fact that I had to find perspective to live and thrive as a result of this disease. I had no choice. I’ve learned a level of strength I never knew I had within myself. I’ve learned humility. I’ve learned to be humble. I’ve learned to laugh at myself. I’ve learned to accept what I cannot control. This disease has inspired me to give more to the world than I take from it. Simply put. Because as a result of this disease I know what it feels like when it seems like the world has dealt me a bad hand. That perspective has given back to my life in a positive way that no other lesson or life experience possibly could. Cheers to the next 10 years and the lessons that await me!

Jessica Caron

The Importance of Having Bosses With Illnesses and Disabilities

Working while managing a chronic illness that doesn’t take a break between the typical 9-5 p.m. workday is sometimes nerve-wracking. How will my boss, coworkers and clients handle situations that require me to put my symptoms first? Will symptoms hold me back from achieving the professional goals I set for myself? Can I do it all – take care of my kids, the house, my marriage and my health? These thoughts go through my head as I start applying for jobs, and it makes me so thankful for the earlier employment experiences I’ve had over the years. I took on my first “real” job about a decade ago, fresh out of college. I was quick to hide any symptoms of Crohn’s disease from anyone at work. I’d use a bathroom on a different floor of the building, take over-the-counter meds that helped to ease some symptoms and fake reasons why I may need to leave the room (Did I lock my car? I’ll just go quickly check…). Early on, I’d even refuse to eat during the day, to avoid the way that abdominal pain could quickly ruin a good day. I didn’t know what people would do when they found out what I was dealing with, so I found it best to keep it to myself. Of course, after some time, it became difficult to hide everything. I knew I could get my work done, but it would take some changes. Luckily, just as I really began to struggle, a new boss took charge of my department. He was sharp, passionate about producing good work, dedicated and also legally blind. As I watched him move through each day, taking advantage of assistive devices and asking for support when he needed it, it gave me the confidence to ask for support so that my disease wouldn’t hold me back either. I came clean to him about what was going on. He immediately supported whatever I needed so I could get my work done, which sometimes meant I would work from home or flex hours so I could get blood work or medications taken care of. In turn, I continued my hard work, and he was quick to support me, because I was able to produce work that deserved it. After less than two years, I would achieve a promotion that he and I were both quite proud of. I can’t imagine accomplishing that task without coming clean about the challenges I had been facing. Unfortunately, though, even workplace adjustments wouldn’t keep me out of the hospital. As I settled into my new role, I experienced multiple severe intestinal blockages I just couldn’t take care of on my own. I even went to work one morning that’d end in the E.R., and still had my badge and office clothes on when I was admitted to the hospital at 2 a.m. the next morning. I panicked when I realized that it would take a little bit of time to recover. Flexibility from a boss was one thing, but what about while I was gone? Would I be replaced? Would my employer worry I wasn’t dependable? Of course I wouldn’t be replaced and they wouldn’t fault me for illness, but these things went through my mind and worried me far more than the visits from the surgical team. My boss would tell me over the phone to take all the time I needed. Again, when I would need more time in the future for a possible surgery, she’d be happy to give me all the time I needed. This thoughtful boss? She was fiercely dedicated to our clients and everyone knew it, but she’d also recovered from surgery associated with multiple sclerosis the year before, so she totally understood. Even now, as I look for advanced work, I’m supported by the owner of the little consulting group that has kept me moving forward with per diem hours while I’ve balanced pregnancies, parenting and my health. He always says that he “gets it” because he’s also a caregiver to his wife with dementia. He has appreciated the balance that work and health requires. What’s more, he’s always cheered me on whenever I advocate for Crohn’s disease and patients like me. I’m cautiously optimistic as I think about possibly taking on another new company, boss and colleagues. Hopefully they’ll be just as warm and welcoming to supporting good work as I’ve experienced in the past. More importantly, though, I’ll remember how they made my working experience possible, by providing: a safe space to advocate for flexibility and assistance, time away to get well when it’s needed and support and encouragement to maintain balance and advocacy. It’s my turn to pass on as much of these supports as possible. Because bosses with chronic illness rock.

Jessica Caron

What It Was Like Taking Biologics for Crohn's Disease While Pregnant

For years, I dreamed about being healthy enough to become pregnant. Unfortunately, as I battled the symptoms of Crohn’s disease, I was left wondering if it would happen for me. On days when I wasn’t well enough to take care of myself, I was haunted with the question, would I ever be well enough to carry and care for a child? Spoiler alert: I have two amazing boys. My oldest is 5 years old. He is a lover of trains, Legos and superheroes; macaroni and cheese; riding his bike; and the movie “Moana.” I thought it might be fitting to announce to the world how I got healthy enough to make this dream a reality: I chose to inject myself with “biologics” (a type of medication used to treat moderate to severe Crohn’s disease, among other illnesses) every other week. This was the only option available to quiet my angry, diseased intestines, and give me the clean bill of health that I hoped for to carry and care for my first child. I took this medication before, during, and after my healthy pregnancies. I was nervous when my doctor first brought up the possibility of taking biologic drugs. My doctor and I started having this conversation a few years before I would conceive my son. My concerns then were mainly fueled by late-night message board posts full of fear, with users sharing unsubstantiated — and at times, dangerous — falsehoods, claiming things like “biologics will give you cancer” (not really). This is not to blame those who wrote the posts, because I was one of them. I refused to take biologics at first, even when it became clear that I may lose a portion of my small intestines. Why? Because I let unfounded fears overrule science. Instead, I wanted to try anything else. Restrictive diets. Yoga and meditation. Not eating. And why wouldn’t I want to give these things a go? So much of managing chronic illness can result in a loss of control for the individual, so I was going to grab onto what I could control: my medications. This is admittedly the wrong way to handle things. I should have opened up to my doctor about my fears – but I would need to get pretty sick before I would be ready to do this. Finally, days before my first wedding anniversary, I could not continue without appropriate treatment any longer. Although my husband and I had spent our honeymoon scheming – planning to start “trying” on this special first anniversary — I had spent the weekend in bed with a heating pad, taking only sips of water and juice while intense cramping took over my abdomen. The pain left me incapable of walking further than the bathroom. When Monday arrived, I tried my best to get through work. But after only an hour, it became clear that I couldn’t handle the abdominal pressure required to sit upright in a chair. I called my doctor’s office for an appointment and asked my best friend (conveniently, also a coworker) to help get me there. The office staff sent me right to the emergency department, where I was admitted to the hospital. As I was rolled to my hospital room, I realized just how bad things had gotten. I couldn’t remember the last time that I had eaten solid foods without throwing up. With a team of medical experts by my side, I found my voice to engage in shared decision-making with openness and honesty about how I was feeling. I discussed my fears (well, sobbed about them to a slightly uncomfortable surgeon) and advocated for what I thought would be best. After much discussion about my plans to have children very soon, I was able to narrowly avoid surgery by assuring my surgical team that I’d stick to an 8-oz ice chip diet for seven days. While in the hospital, with their oversight, I gave in to everything – steroids, biologics, and bedrest. And boy did things get better fast. When word got out that I was taking these medications, I soon began receiving troubled emails and Facebook messages (didn’t I want to give the Paleo diet another try?). At a family reunion, a cousin said with concern, “Those are chemotherapy drugs, you shouldn’t be taking those – they’ll kill you. Those are for people with cancer.” This type of feedback left me feeling ashamed for trying to get well. Who was I supposed to listen to? The concerned “village” or the one doctor, who was working directly with me to review the benefits and possible side effects of this medication. The doctor had my ear for 15, maybe 20 minutes every few months. The family, friends, and coworkers were around me for hours every day. But now I knew how bad things could get for me, and I was determined to work with my doctor to ensure that this wouldn’t happen again for a long time. The results were right where I wanted them to be: after a few months I had gained weight, I was eating solid foods again, and I was even getting out and doing a little bit of running. Running! After going to the bathroom 15 times a day. Once weaned from steroids, and scopes confirmed disease remission, I was feeling excited and ready to revisit my main goal. After experiencing a severe blockage and knowing just how unhealthy that situation could become, I became committed to understanding what the research had to say about Crohn’s and pregnancy. What I learned was that I should be healthy and fully healed before getting pregnant – which for me would mean strict adherence to medication. During pregnancy, for best results, I would need to stay on my medication. And after pregnancy, (although we did “pause” the meds for a few weeks around delivery time, to help limit any possibility of infection) I would stay on my medication while breastfeeding. Read more about this research here. What would this look like? What side effects would I have? Would the baby be OK? Science said yes, but I had heard enough concerned voices that I did wonder a little bit. Turns out, the biggest complication would be wrapping my arms around my gigantic belly to make two injections into my legs every two weeks. But I’d say that the trade-off made it worth it. Otherwise, I was a normal, healthy, pregnant mom. Fears from the internet, family and friends left me questioning if being on medication while pregnant was the right thing to do. At first, I wondered, as they did, if it would be making the right decision. But I’m here, having had two beautiful pregnancies with two healthy, happy, amazing little boys, feeling nothing but thankful. I’m thankful that I spent time talking with doctors about my true fears, advocating for my desire to have the best pregnancy outcomes possible, and sticking to the research. For me, this meant biologic medication. If you’re feeling lost in this process, too, take the time to discuss all of your concerns with your doctor, and focus on the new research that is popping up every day. I know I’m glad I did.

Jessica Caron

Why I Was Thankful to Be Diagnosed With Crohn's Disease

It was a beautiful, hazy day in August when I was formally diagnosed with Crohn’s disease. From over the phone, the doctor’s words seemed in such stark contrast to my surroundings that I had trouble digesting them. It was warm, and I was exhausted; all I could mutter was, “OK.” Appreciating the reality of being diagnosed with a lifelong, incurable chronic illness wasn’t on my mind. Instead, assigning a name to the beast taking up residence in my abdomen had left me feeling a bit relieved, honestly. Maybe even a bit hopeful. When the illness had been nameless, it had felt so daunting to manage. A disease with no identity left me with no treatment options. Now I’d have options to make life more livable again. Now I could move forward. More importantly, with a concrete diagnosis, I could answer that lingering question: Was this all in my head? It wasn’t by accident that I wondered if I could be exaggerating my symptoms; the idea was placed there firmly by one of the first doctors who treated me. I had already been passed between a few different physicians when I met him. I had continued to return to the clinic, hoping someone could help with the pain, nausea, bloating, frequent bathroom trips and unexpected weight loss that had refused to subside. During our brief encounter, he feigned interest in my file, looked up, sighed and replied with a sense of boredom, “Jess, what you have is the flu. I need you to suck it up here.” I was prescribed bed rest. I was told I looked “young and healthy.” In that moment, the doctor’s pejorative feedback left me feeling alone and weak. I was apparently failing to keep myself in good health. Walking out of his office in frustration, I questioned my decisions leading up to this point. Was I just “weak?” Was I the one causing these symptoms in some way? I would follow this same daunting, self-accusing train of thought each day until a formal diagnosis was made. I would keep at it, though. While I waited on results from blood work and stool studies, I focused on wrapping up classes with at least a passing grade. I occasionally drank beer with friends to numb the pain and forget about my dysfunctional body. I showed up to my job as often as I could, even though I couldn’t get through much without running to the staff bathroom. A stack of my call-out notes sat in the staff meeting room for all to see, listing “diarrhea” as the culprit. The doctor’s new theory was that it wasn’t the flu, but rather traveler’s diarrhea, even though the results didn’t indicate any present infections. I took antibiotics as I was instructed, and I said, “Thank you” as everyone complimented me on my thinning frame. By the morning of my college graduation, I was consuming a diet of mostly mashed potatoes to manage my symptoms. I remember lying exhausted in my bed until the last possible minute, saving all my energy for the events of the day I had spent years working towards. Later that night, while everyone arrived for the graduation party, I stood in the bathroom and stared at a considerable amount of blood in the toilet. Was it time to panic yet? “No,” I told myself “Everyone is here for your party – you can’t disappoint them.” Besides, we weren’t even sure that it was anything, yet. I would emerge from each trip to the bathroom with a smile plastered on my face. I soldiered on. Because, I don’t like to be called weak. I’d needlessly suffer in solitude, instead. My saving grace was weight loss, some proof for the medical professionals who couldn’t hear the person sitting in front of them, saying something was wrong. I was assigned food journals to assure my doctor I was eating enough. I completed mental health questionnaires. I followed suggestions to replace gluten and dairy in my diet, even though it was the “healthy” vegetables that felt like fire in my gut. I was instructed to prove myself innocent of being the root cause to my body’s malfunctions. This cycle would continue. I’d attend an appointment, be sent home to rest and call back in “a week or two” if symptoms didn’t improve. I’d call back, they’d test for the flu and infections, as it was assumed that I had, and I’d wait for an appointment to review the results. Finally, and after far too long, I traveled to a new state to find answers to my questions. Within a few months of transitioning to the care of a new gastroenterologist, I would receive a proper colonoscopy, which would reveal my true diagnosis. As the nurse started my IV to get things ready for my procedure, I didn’t fear what the outcome might be. Instead, I wept from the physical and mental exhaustion of carrying on in a broken body for so long. In this diagnostic scope, I hung all my hopes that this might be my last stop in the journey to end the mental burden of the unknown. That someone might say, “I believe you.” It turned out I would be right. As I ended my call with the doctor, I began to shed the mental weight and pain I had been carrying for so long. I took my first steps as a woman with a chronic illness and vowed that Crohn’s disease would find a formidable enemy in me now. We want to hear your story. Become a Mighty contributor here. Photo via gpointstudio on Getty Images

Jessica Caron

Why You Should Stop Apologizing to Your Doctor

Recently, I wrote an email to my specialist and felt the need to say, “Sorry for rambling!” at the end. But is this really how I should be feeling after communicating with my doctor? I’ve been with this doctor for quite a few years, and yet I still feel the need to say, “I’m sorry,” whenever I worry about being a burden to him or his practice. I think that it’s because I appreciate his care so much. When I realized what I was doing, I stopped to think. I know that he wouldn’t want me to feel this way. So, I took a second look at that email and I ended it with, “Thank you for taking the time to read through this!” instead. I’m a savvy patient. I know a lot about my diagnosis and medications. I have a good idea of how to manage complex issues and emergencies as they come up. I communicate regularly with my medical team regarding new symptoms, lab results, and appointments. And yet, when I advocate for myself, I still like to apologize for possibly being an inconvenience. I was so close to calling myself an empowered patient – even thinking for a time that I was. And then, I noticed my need to undermine my advocacy with apology. Could this gut reaction be a hold over from the out-of-date paternalistic approach to managing care that I was raised on? Doctors should be interested in their patient’s understanding of their care. They shouldn’t consider it a burden when patients communicate their desire to be involved. It’s proven to lead to better patient outcomes in care. If your doctor or medical team is making you feel this way, you should talk to him/her or consider making a change. But, if you’re doing a lot of the right things – asking to be involved, informed, and heard – but you’re ending it with an “I’m sorry,” and you’re not sure why you’re feeling like a burden, try asking yourself: What am I sorry for? If you find that there is no substantive reason for apologizing, say, “Thank you,” instead. Just remember: You’re a member of your medical team with a right to information and input. There is no need to apologize for wanting to exercise that right. Follow this journey on Chronically Jess. We want to hear your story. Become a Mighty contributor here . Gettyimage by: NanoStockk