Why Crohn’s is the gift that keeps on giving

December 23, 2019December 23, 2019Leave a comment

When you think about your IBD, chances are many thoughts race through your mind. This holiday season, I started thinking about how Crohn’s is the immaterial gift that keeps on giving. I know, it sounds crazy. But hear me out.

The unpredictability and uncertainty of IBD has forced me to live in the moment and stop worrying about tomorrow and the future.

The pain, setbacks, and flare ups have provided me with perspective and empathy for others that’s only possible when you live with chronic illness.

The fatigue reminds me of the importance of slowing down, not pushing myself too hard, and practicing self-care.

The ups and downs and in between have given me an innate truth serum about other people’s intentions and character and allowed me to know who I can truly count on.

The side effects of steroids and the scars left behind from my bowel resection and c-sections have humbled me.

The dark moments that tried to break me have instead showed me that God truly does give his toughest lessons to his greatest teachers.

The hatred I felt for my body through the years (especially my abdomen) disappeared the moment I became pregnant and watched my body transform to bring two healthy babies into this world.

The hospitalizations that have tried to break me have forced me to bounce back and be stronger physically and mentally than I was before.

The initial years of isolation when I kept my patient journey under wraps led me to go out on a limb, share my story, and feel the support both near and far from a community that’s like family.

It’s taken me nearly 15 years to think this way about my disease, about my reality. I’m not trying to sugar coat or diminish the seriousness of IBD, but instead share my mindset and how I choose to take on Crohn’s disease. Yes, some days are terrible. Yes, there have been times when everything felt heavy and bleak. Yes, there are still times I feel sorry for myself. But those days are far outnumbered by the joy-filled, happy days I choose to focus on.

My hope for you this holiday season is that you’re able to pause and embrace the hand of cards you’ve been dealt and think about all you’re capable of, all you’ve accomplished, and all that lies ahead. Give yourself credit for all you do today and tomorrow, all you’ve endured in the past, and all you’ll overcome in the future.

How motherhood has helped me discover I’m so much more than my IBD

January 21, 20191 Comment

We walked out of the automatic rotating doors of the hospital and the cold air hit my face. I looked up to the sky in thanks, to show my gratitude and to take in the moment. We had our baby girl in tow, our Sophia Shea. It was a brisk January morning. Tears filled my eyes as I was overcome with emotion. Our rainbow baby is here, safe and sound. Another pregnancy behind me, a pregnancy that silenced my Crohn’s disease and provided sweet reprieve from my chronic illness. It was time to take Sophia home and start our life as a family of four.

When your health is taken from you and when you receive a diagnosis of inflammatory bowel disease, life prior to illness often feels like a distant memory. There’s something so sacred and so special about bringing a healthy life into this world, despite your own shortcomings.

My Sophia, much like my sweet son Reid, are my inspiration and motivation to push through the difficult days and find strength and perspective within myself. The creation of their lives has renewed my faith in my own body. Each time I have a procedure or deal with painful symptoms, I see their faces, I say their names in my head, and it brings me a sense of calm. My goal when Reid was born, was to stay out of the hospital until he could walk, luckily that’s been the case. He’ll be two in March. Now, I have that same goal following the arrival of my daughter.

Pregnancy and child birth bring about such an amazing, miraculous transformation. You see life created right before your eyes. You experience a shift in your own identity. There’s nothing like it. There are no words to capture the emotions and the overwhelming love you feel for your children.

Finding the balance: Motherhood and IBD

Motherhood and IBD can be a difficult and challenging balance. Some days the fatigue and symptoms are so debilitating you feel like you’re falling short. At the same time, the days where you’re feeling well, remind you that you are so much more than your disease. Just because you have a chronic illness, doesn’t mean you are robbed of experiencing the beauty of life and what it feels like to have your very own family.

Women often reach out to me with questions regarding fertility, conceiving, pregnancy and what it’s like to take on parenting while battling IBD. There are so many unknowns. I know it can be daunting. It all starts with recognizing where you are in your patient journey and then determining when your symptoms and body are in the best shape to get pregnant. While everyone’s disease experience is different—the worries, concerns and fears associated with parenting and chronic illness are often the same. Always know you are never alone. Communicating these feelings with those around you, makes all the difference. Lean on our patient community and all those who’ve lived your reality.

I treated my pregnancies the same. I had colonoscopies prior to trying, to ensure I did not have active disease. Once I received that green light, I discussed my game plan with my OB, high risk OB and my GI and had monthly and sometimes weekly appointments. Each time—I stayed on my medication and vitamins from start to finish, which includes the biologic drug, Humira. I had scheduled c-sections for both. It’s all about finding what works for you, what brings you comfort as you embark on this journey and being confident in your decisions. It’s your body. It’s your baby.

When Sophia Shea entered the world January 14, 2019, our family received a wonderful gift. Between our son Reid and our baby girl, we could not be more blessed. My chronic illness has given me such an appreciation for health and for life in general. With the pregnancies behind me, I often reflect on where I started back at age 21 in 2005. At that time, in my eyes, I was Natalie and I had Crohn’s disease. There was no telling what my future would hold. Now, nearly 14 years later, at age 35, I’m so much more. I’m a mom to two under two. I’m a wife. I’m a daughter. I’m a sister. I’m an aunt. I’m a friend. And I also have Crohn’s.

My top 5 wishes for those with IBD

December 31, 2018December 31, 20183 Comments

As we bid farewell to 2018 there is much to reflect on. Each year brings new experiences, relationships and opportunities. Some years leave more of an imprint on our memory and on our heart, than others. When you think back on the past 365 days what were the highlights? What were the low points?

For me—the past nine months I’ve been incredibly grateful to have another healthy pregnancy, that silenced my Crohn’s symptoms. I’m also celebrating 3.5 years of no IBD-related hospitalizations or ER visits! The cherry on top was the release of Citrate-free (pain-free) Humira this year! After more than a decade of giving myself the painful injection, the new formula has greatly improved my patient experience.

Here are my 5 wishes for you in the days ahead:

Strength through difficult days

There’s no telling when the next flare will strike. We all know it’s not a matter of if, but when. When the going gets tough, take it one hour, one moment at a time. Try not to overwhelm yourself with worry. Go to your happy place and think back to past flares and all the hurt and pain you’ve overcome. Use the moments of your journey from the past that have tested you the most, to serve as your greatest source of empowerment. As the years go by, and your diagnosis seems like a different lifetime, use that to your advantage.

Management of your symptoms

Remission is something that is possible, but there’s no telling how long it will last or for some, if it will ever become a reality. By getting your symptoms under control and well managed, whether that’s through medication, diet or both—your quality of life improves vastly. Celebrate the feel-good days and soak up the moments where your IBD isn’t top of mind. You have an innate sense of when your body is giving you warning signs that rough waters are ahead. Be mindful of the inner conversation going on in your head and listen to your gut. Although it tends to be our nemesis, it has a way of alerting us when things are about to get out of our control.

Perspective about your experience

Use your patient journey and that of others to give you perspective. Empathize with friends and family members going through health struggles, whatever they may be. Sure, many people have it better than us, but many have it a lot worse. It’s not a competition to see who is the sickest, but rather a way of shifting our mindset and understanding that many people have struggles and we are not alone in our experiences. Like the saying goes, until you “get” a chronic illness, you don’t really “get” it.

Support from those around you

Having a network of close family and friends to lean on at a moments notice plays a major role in how we take on IBD. Don’t be afraid to ask for help. Communicate the good and the bad, without fear of being judged or ridiculed. Trust that those close to you love you and appreciate you for everything that makes you, you—including your disease. Show appreciation for your caretakers—those who live with you and are in the trenches by your side, day in and day out. Find comfort in those who allow you to be vulnerable when you need to be. Stop putting effort into relationships and friendships that don’t add joy to your life—eliminate the negativity, cut the fat, there’s no need for people who bring you down or belittle what it’s like to live with Crohn’s or ulcerative colitis.

A health care team who listens

Find IBD specialists and gastroenterologists who enable you to be your own best advocate, who listen when you’re worried and address your concerns without making you feel less than or like a number. By trusting in your doctors and the care they provide you, you’ll feel much less stress about the path you are on as a patient.

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

October 8, 2018Leave a comment

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.

“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. The 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 lights

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!

Finding strength through your IBD tribe

June 11, 20182 Comments

Back in the fall, I had the privilege of sharing the stage with a fellow IBD advocate in the St. Louis area during a Crohn’s and Colitis event. Her name is Kelli Young. Kelli has battled Crohn’s disease for 28 years. She’s a veteran to the game, and has incredible perspective about how IBD not only shapes our lives, but dictates the kind of people we become. This week—a guest post from Kelli about why finding your tribe—an empathetic support system—makes a world of difference.

It took over a year and a half of being prodded and poked in every orifice of my body to receive the diagnosis of Crohn’s. I received the devastating news eight days before entering my sophomore year in college. The excitement of knowing “I’m not a hypochondriac” was overshadowed by the fear of having a “poop disease”. You see, my first year of college, I became best friends with my Suite mate. Ironically, she too battles Crohn’s. I was 20 years old, diagnosed with a disease that had no cause and therefore no cure…how can that be? Why me? What am I going to do? I didn’t even know how to swallow a pill. I was never the sick kid! Now, I had to take 24 pills a day, which sometimes would take me an entire hour to swallow one dose, throw up, re-swallow again. Three times a day. It was as if I had entered “hell”.

Six month after diagnosis, I came home from college for winter break. Tipping the scale at a whopping 75 pounds, my body was too weak to undergo surgery. For 45 long days, I received all my nutrition through an IV. This was so my bowel could rest as I prepared for a colon resection. The surgery was my only hope for living a more productive life.

What I’ve learned after nearly 30 years with IBD

Fast forward nearly three decades—and through the years, I’ve been labeled as “the complicated” patient. I’ve undergone multiple surgeries which include: three colon resections, gall bladder removal, appendectomy, countless ERCP’s and fistula repair. Can’t forget the life-saving blood transfusion I needed after my colon ruptured, causing me to lose half my blood volume. I dealt with TPN (Total parenteral nutrition)/bowel rest for each of the three surgeries. 45 days was my longest duration on NPO(no food). 30 days was my longest hospital visit. For the last 28 years, my body has had medication dumped in it.

My generation was taught differently. Which made my journey with the disease a little different than today. I was raised to think “only the weak complain!” “Someone always has it worse!” “Suck it up butter cup”. “If you want the job done right, do it yourself”. This made me look at the situation as this was “my” disease, “my” problem and I don’t want to make anyone worry about me or feel sorry for me! I became a master at hiding the disease and a master at hiding the byproducts of the disease.

It has taken me decades to evolve. Six years ago, I realized, I had to create a better “village” for myself. And my voice was starting to be heard. I just wanted my peeps to treat me as an equal, no matter how many bowel movements I’ve had that day. And most importantly, yearning for support and compassion, not to be mistaken for pity or despair! During my evolution process, big sacrifices had to be made. As a mother of two, I had more than just myself to think about.

The power of transparency

Today, transparency has set me free. Free from the misconception that I’m “lazy”. Free from the labels placed on me because of my thin statured frame. Free from the worry of how others view me. And free to live my life.

Today, I am able to share my journey with an audience that might share a similar experience or with an audience that has a loved one with Crohn’s Disease. I share my story, with the hope of inspiring others and showing anything is possible.

My disease has made me who I am today. It has taught me that I am strong, determined, confident and secure. I’m a proud mother to two amazing children. I carried and gave birth to both of them with zero complications. I’m a business owner of a successful insurance agency, which I established 4 years after diagnosis. I didn’t allow my disease to derail my professional aspirations. I’m an active mother and manage to find time to be a room mother and Girl Scout cookie manager.

As a patient advocate, I serve on the board of the MidAmerica Chapter of the Crohn’s and Colitis Foundation, in addition to other professional boards. I value the good days! I reflect on my bad days and listen when my body tells me to slow down and get rest.

My advice to you

If you’re newly diagnosed or in the thick of the battle, it’s important that you realize… “this is your normal”. Embrace it! Accept it! Own it! Speak about it!! Get a “village” that gives you positive support, not to be mistaken for negative attention. If I can get thru this crazy game of life with Crohn’s disease, so can you! Don’t let the disease define you.

While I know my journey will include the daily struggles from the disease, it no longer is my hidden secret. My village knows and loves me for me. They understand the disease and ask questions to understand it better. This is not just my “problem” any more. As we all patiently wait for a cure, it is important we speak up, join together and help one another.

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Tag: patient perspective