How living with Crohn’s inspires this medical student to make a difference

There’s never a good time to receive a diagnosis of inflammatory bowel disease. The earth shattering news tends to flip your world upside down. For 27-year-old Alyssa Alda Clements of New Jersey, her Crohn’s disease diagnosis could not have come at a worse time. Alyssa was in her first year of medical school and had recently lost three family members.

“The hardest part about my diagnosis was the time I spent in the hospital or being homebound, because it took me away from my schooling. Having to take medical leaves from my DREAM was so heart breaking. I had wanted to be a doctor since I was three. In time, I started to feel better when we got things under control and was able to go back to medical school and, knock on wood, I am still hanging in here,” Alyssa says.

Being sick never made her want to quit, if anything it made her realize how much we need doctors, especially ones who care. Alyssa says her patient perspective provides her with insight when it comes to the type of doctor she wants to be and the type of care she aspires to provide day in and day out to those who depend on her. alyssa7

“My first trip to the ER nearly killed me because the doctor didn’t believe my pain, told me it was in my head and that I was a crazy medical student, and didn’t even touch or listen to my abdomen. It turned out to be an obstruction and thankfully I listened to my gut and went to a different ER the next day,” Alyssa recalls.

Fast forward a week later, Alyssa woke up from her first colonoscopy to learn she has severe Crohn’s disease in her large intestine, small intestine and rectum. The GI spoke candidly and said her odds of ever becoming a doctor were slim, due to her health. But, Alyssa didn’t let the naysayers stop her from following her dreams.

Becoming a doctor while living with Crohn’s

As many know, working in the medical field is not for the faint of heart. alyssa6The profession entails a great deal of stress, both physically and mentally. Not only are the hours long, but you are exposed to a ton of people who are sick, while you are immunocompromised.

“I have learned so much about empathy and sympathy as a patient, the way some physicians made me feel pushed me to continue in medical school and be a better caregiver than they were to me at my worst moments. I have learned to listen to the patient because I have been ignored. I know just what being a patient feels like, how scary, uncomfortable, painful, that being sick can be, and I want to be there for others who are in that position. When I finally found my amazing care team that I have now, I became hopeful that I could be that person for someone someday,” Alyssa says.

As far as advice for fellow IBD’ers, Alyssa says be honest with yourself and what you can handle. Don’t let your disease limit you, but also know that it’s ok to be kind to your body and slow down when you need to. Alyssa says she’s modified her life so that she’s able to handle medical school and keep her well-being in mind at the same time. She relies heavily on the support of her family and boyfriend and makes self-care a part of her daily life.

Big city, bright lightsalyssa people

Alyssa was recently featured by People Magazine, that’s how her and I connected on Twitter! I saw her inspiring story and immediately wanted to share it with you. She went to New York City and was interviewed as a woman who is overcoming chronic illness. Talk about a great person to represent those of us in the thick of fighting this disease.

Her attitude is admirable, “I want to show anyone that they can be strong and resilient and still achieve their dreams after a diagnosis. I want to show young women and girls with illnesses that they are still beautiful, that their bodies might be constantly changing, but they are still themselves, they are still amazing.”

Bouncing back from difficult days

In her first year of diagnosis, Alyssa was in and out of the hospital. She endured more than 12 bowel obstructions, a PICC line, NG tube and tests galore. While at Disney World that November, Alyssa fell to the floor of her hotel room. She came to find out she had multiple abscesses and fistulas. After four weeks of total bowel rest, she had an ileocecectomy. A total of 13 inches of her intestine was removed. In her eyes, the surgery saved her life. Alyssa has been on Humira for almost five years. She says the new citrate free formula has changed her life (and I must agree!!)

“Days can be hard, filled with pain, fatigue, never ending symptoms, but always know that you are not alone. There is an army of us fighting diseases you can’t see.” You got that right, Alyssa!

Celebrating a major patient victory: Citrate-free Humira

I still remember the first time I felt the pain. Sitting in my GI’s office with the nurse and my mom. Fresh out of the hospital after having an abscess the size of a tennis ball in my small intestine. Knowing I had to inject myself with a painful biologic drug, four times in a row, for the loading dose. The feeling when the medication entered my body was like nothing I had ever felt before. It was an unthinkable amount of pain. It was overwhelming knowing that for the rest of my life, I would endure this same pain, multiple times a month…with no end in sight.

Fast forward more than ten years later. A total of 122 months, hundreds of injections. My reality as a Crohn’s patient just changed. IMG_2966It changed in a way that I never knew was possible. I have so many flashbacks of my journey with Humira. The tears as I felt sickly in my 20s sitting alone in my apartment and wondering why me. The dread, anxiety and anticipation every other Monday and the strength I had to muster up within myself to once again receive my medication. Holding the injection in my hand, getting in the zone and focusing my thoughts on brave family members and friends as I held down the plum colored button and felt the burn. The sad look on my son’s face as he looked in my eyes and witnessed his mama hurting.

Now, all this is a distant memory. Thanks to the Citrate-free formula developed by AbbVie and approved for adults and pediatric patients in the United States, this reality is over. A matter of days ago, I experienced my first pain free Humira injection. I had heard all the hype and excitement around it, but it was so difficult to fathom such a change in my patient experience. Here’s a video of me experiencing my first Citrate-free injection:

I’m here to tell you it’s completely painless. Less pain than a blood draw. Less than a flu shot. You feel nothing. The process, effectiveness and outcome are the same, but you don’t feel anything. It’s emotional and overwhelming in the best way. I cried for a good half hour after my first one, happy tears. Tears of joy from a woman who now knows her children will never see their mom struggle in pain. Tears of joy from someone whose eternally grateful for a medication that keeps a painful and debilitating chronic illness at bay. Tears of joy knowing that I will never have to feel that awful pain again. A pain that’s too much to put into words, that was part of my life for so long.

The sun is shining a bit brighter today. I feel a load has been lifted off my shoulders that I didn’t even realize had been there for more than 10 years. When I heard about the Citrate-free formula being approved and available in the States, I was excited—but, didn’t realize the true extent of what a difference it would make in my life. joy-2483926_1920

If you’re on Humira and living in the States, make sure you talk with your GI and specialty pharmacy to ensure your script is changed to “Citrate-free”. The extra leg work will be so worth it. It brings me so much happiness to know that young children on Humira will never have to feel the pain. It gives me peace of mind as a chronic illness patient to know that developments like this in treatment are possible and happening right now.

My call of action to doctors, specialists, healthcare teams and specialty pharmacies—please communicate this with patients. I’ve heard from countless people around the United States who heard about this for the first time from me. That’s not the way it should be. My GI gave me a heads up three months ago.

Fellow patient advocates, please feel empowered to share what this means to you and reach out to your individual communities and support networks, so people can get the ball rolling and experience this for themselves. Our voices are strong, and word of mouth is powerful.

Humira was approved for Crohn’s in 2006. I started taking the injections in 2008. Now, it’s 2018 and patients in the United States have access to the Citrate-free (pain free) formula. What’s next? Now, we can truly continue to dream.

Reflecting on two years of marriage with IBD

Two years ago today, I married the love of my life. The man who has been by my side through multiple hospitalizations, flare-ups, surgery and day-to-day management of my Crohn’s disease. Prior to walking down the aisle, we shared vows during our “first look.” Here are a few lines from my vows:

photo by J Elizabeth Photography www.jelizabethphotos.com“You’re an incredible partner—you’re my rock when I’m sick and you know how to lift my spirits when I’m down. You have a way of easing my worries and bringing me clarity when I’m uncertain. Each day spent with you—is an extraordinary blessing. I feel so incredibly lucky that God brought us together and chose you to be the one person among millions who lights up my soul.”

When you battle inflammatory bowel disease, it’s a big part of your relationships. As a family, Bobby and I focus on one another, our son and managing my disease. It’s a team effort. It’s comforting to know that when I’m not feeling well or going through a difficult part of my disease journey, that I can lean on my husband for strength and support. Just this week, I was struggling with symptoms. Countless bathroom breaks. Relentless gnawing cramps that bothered me for hours. My husband always checks in on me—lightly knocking on the bathroom door to make sure I’m ok. Texting me while I’m stuck in there, bringing a smile to my face with funny emoji’s and sweet talk.

It’s the little things. The day-to-day management that many do not see and that can be easy to take for granted. Our caretakers, our main sources of support and comfort do so much—effortlessly. IMG_0324_1At times, living with a chronic illness and being the one who doesn’t feel well, can bring about guilt. It also brings out the best in us. When I’m vulnerable and need a boost, I see my husband rise up to the challenge, time and time again. I’m constantly reminded I chose to live my life alongside someone who has more compassion in their heart than I knew imaginable.

Tonight, I’ll give myself a Humira injection. Tonight, my husband will stand in front of me like he always does, cheering me on and holding onto our son, so I have a focal point of inspiration. Each injection, as I stare intently at my guys, I tell myself I need to be strong for them. I tell myself I need to do all I can to stay healthy and out of the hospital. I tell myself anything is possible with them by my side.

So, as we celebrate two years of marriage and nearly five years together, I reflect on how far we’ve come as a couple, as a family and how our love has grown as a result of my illness.

Oftentimes it’s life’s hurdles that provide the greatest perspective, the strongest insight, and the clarity that you’re exactly where you need to be in this life and that your disease is a part of you, but you are so much more. IBD does not need to rob you of love. It does not need to prevent you from getting married. And it certainly does not need to stop you from finding your fairy tale ending.

There for Them: Why AbbVie’s new campaign is far from shameful

I was cuddling my nine-month-old son on the couch when this commercial came across the TV. Before you continue reading, please click the link and watch.

Somber music played and as the one minute clip unfolded, I knew within seconds it was about inflammatory bowel disease…even though there were no words. The imagery, facial expressions and moments hit close to home. IMG_4947I was immediately at a loss for words. But in a good way. I’ve been those people in that commercial. I’ve witnessed family members look at me sympathetically as I excuse myself from the room. I’ve held my stomach and grimaced in pain, doing all I can not to miss a moment of a social gathering. I was recently at the movie theater with my husband, gazing with jealousy at people who could eat popcorn…willing myself not to buy any.

AbbVie is getting mixed reviews about their latest campaign. Some are blasting it on social media calling it “shameful”, “ridiculous”, “a guilt trip”, “disgusting”… the list goes on. To be quite honest, I’m shocked. As a mom who’s battled Crohn’s disease for almost 13 years, this is the first time I’ve seen a commercial about IBD and related to it 100 percent. This isn’t some ploy to try and make people feel guilty for their condition. It’s the reality of what life is like for IBD families. Unless you personally battle IBD or your family member does, you should be hesitant to spout off and share your opinion, as you can’t claim to know what goes on behind closed doors when the illness doesn’t need to be invisible anymore.

This commercial isn’t about making those with chronic illness feel poorly about themselves or guilty about their condition. Rather it’s bringing the truth to the forefront, for all to see. Every other big pharma ad out there shows some picturesque portrayal of someone running off a field, walking on a boardwalk or hiking up a mountain. Sure those with IBD can do those things, but that’s the power of IBD being an invisible illness. We can do those things, with a smile, even if and when we’re hurting inside.

IMG_4744I’ve been on Humira almost 10 years. I don’t need to be sold on the drug. But this campaign means the world to me. It represents what my parents, husband and son endure by my side. This disease impacts more than just the patient. It’s a family affair. When my son is old enough I want him to be empowered by my strength, but able to empathize with my struggles. Thank you, AbbVie for recognizing this and giving the world an inside look at the IBD patient and family experience. The commercial ends with “To be continued”… I can’t wait to see what’s next.