Month: July 2020

Digging in the Archives: Emails I wrote following my Crohn’s diagnosis in 2005

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When I started my blog, Lights, Camera, Crohn’s, four years ago, my main mission was to be the voice I desperately needed to hear upon diagnosis. As I reflect on my 15 year diagnosis anniversary, I thought it may be helpful to give you a behind the scenes look at some of my email archives from 2005…days after finding out I had Crohn’s disease. I’ve never shown these to anyone (other than the recipients, of course!)…but my hope is that in sharing private feelings, you’ll be able to see how my perspective about life with IBD has shifted and evolved since I was a 21-year-old girl feeling up against the wall with nowhere to turn.

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Photos taken in May 2005 (prior to diagnosis) and September 2005 (while on 60 mg of prednisone).

This article is dedicated to the newly diagnosed. We’ve all been in your shoes. What you’re thinking. What you’re feeling. What you’re struggling with. We get it. It’s not fair to compare where you are in coping to someone like me who has been dealing with Crohn’s for 15 years and been in remission for nearly five.

Here are snippets from my emails to friends. Reading the pain in my words and re-living this difficult time can be a trigger, but reflecting and seeing how far I’ve come is also incredibly empowering.

“I’m having a really hard time with this, harder than I ever could have imagined or dreamed…and I’m having a hard time trying to act like everything is great on the exterior. I feel like I’m on the brink of a breakdown…the drugs are getting to me so much. I woke up with visible shakes this morning and have been shaking all day. My moods aren’t me. I feel like I am a different person and that as much as I want to be the old Natalie, it’s just so hard to wake up smiling and happy. I’m getting tired of my family constantly asking me if I’m doing ok and feeling ok and everyone staring at me while I eat…I just feel like a pity case to so many people. I feel so alone in all this. I’m trying to be upbeat…and I know that it is going to take time to get acclimated to the lifestyle changes and everything, but right now I’m just having a difficult time figuring out who I am and where I’m supposed to be in life. The insomnia has left me up every night just thinking and wondering what the future holds and if I am ever going to feel normal again.”

“I try so hard to be strong and tough about this and it just all stays bottled up and I just started crying and am having a hard time stopping. It’s just so hard. I look at pictures and think back to even graduation time and it just freaks me out that I went from living a carefree, healthy life…to this. I know it is something that I will always have and that I have to get used to it…but it’s hard for me to handle at times. I don’t mean to complain or worry you or anything, I just feel as though I need to get out some of this frustration before I go to bed. I’m scared of getting sick again and having to go in the hospital sometime again…and I just feel like I can’t go a day without a thinking about all the what ifs. You know I analyze so much…haha…it’s like a living nightmare!”

“I’m sorry if I talk about this too much. I’m sure it isn’t the most appealing or attractive thing to have to hear from your gf…but sometimes it becomes a little overbearing on me…and I can’t hide my fears when it does. I mean I refuse to let this change who I am and the life I will lead, it’s just at times it seems so much bigger than me, and so much larger than life. I know I have been complaining a lot about my puffy cheeks and stuff…and I know that prob gets old…I just get so self-conscious about it…and it just sucks that I have exactly 2 more months left on the steroid. As my dosage gets lower and lower the side effects should stop and start to go away…I’ll believe it when I see it!  I guess it’s just scary to me to see the effects of a drug that are helping me on the inside and hurting me on the outside. I just want to look the same to you as I did the last time you saw me.”

“What I won’t ever apologize for is this summer, because I was going through a living hell, and I saw which friends were there for me and which weren’t. I was ridiculously ill from June 5th-my bday (August 24) and you were angry with me for not keeping in touch. I couldn’t even stand to get myself a glass of water for weeks and was hospitalized for days. I never heard anything from you. I know that people handle those types of situations differently… but that was the hardest thing I’ve ever gone through in my life, and I really needed a strong support system. Battling with a disease and feeling like I completely lost myself has made me have to be a little selfish these past few months. I’m just coming to grips with it all now and thank God I’m feeling well…but it is still an adjustment and has given me a complete different perspective on life.”

You guys. I’m sitting here crying. I’m that girl. I wrote those words. That was 15 years ago and thinking about that time still feels like a knife in my chest. Even though this disease has enabled me to gain so much gratitude and perspective, it still robbed me of a lot. It still hurts…sometimes more emotionally than physically these days since I’m in remission. These diagnosis anniversaries stir up a lot of memories. While I choose to think of it as a time to celebrate another year of taking this disease on with all the strength I can muster, it’s also a time that takes me back to some of the most challenging and difficult moments in my life.

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I colored this in my hospital bed after being diagnosed with Crohn’s.

I wish I could hug that girl and tell her it was going to be alright. The career, the love, the family…it would all happen. If you’re in that difficult space right now coming to terms with your newfound identity following diagnosis or getting over a flare up, please know this disease ebbs and flows. It’s not a constant. The good and the bad moments are fleeting, but your resilience and your confidence in coping becomes so much a part of who you are, it’s hard to recognize who you were before.

The Chronically Honest: The Inspiration Behind the Illustrations

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She’s the person behind the artwork that has helped connect thousands of chronic illness patients on Instagram. I’m talking about a 20-year-old woman named Julia who created “The Chronically Honest” in hopes of making others feel less alone. Diagnosed in November 2019 after struggling with symptoms for three years, Julia is coming to grips with her battle against IBD in the middle of a global pandemic.

The first in her family to take this disease on, her experiences thus far have felt a bit isolating. As a college student, she often feels out of place amongst her peers.

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“When I was first diagnosed I really searched for something, whether it be art, or blogs that portrayed all the feelings I was experiencing and let me know that it was okay to feel them,” says Julia. “I was met with countless stories of positivity and turning a bad situation into a good new perspective on life. While I definitely appreciate that and know positivity is vital when dealing with IBD I was searching for something that showed struggle and depicted the crappy side of living with this disease (pun intended)!”

Striving to dig beneath the surface

With The Chronically Honest, Julia strives to show both the ups and the down of living with IBD. She hopes that by showing the struggles, she can make fellow patients feel better understood. Image

“My inspiration to create my illustrations often comes from struggles or triumphs I’m experiencing in the moment. If I am not doing well and have had a bad day, I will create an illustration that reflects that, and vice versa. However, I also get inspiration from others. If I am scrolling through my Instagram feed and see a quote that really resonates with me and my experience and I think it could help others, I will make an illustration based off that.”

Creating art to cope

“My art honestly helps me cope with my IBD more than I could ever imagine. It’s the best distraction and it’s a wonderful outlet for exploring and sharing my feelings. Often when I’m super sick or have to stay home because I’m symptomatic, I will channel my frustration and sadness into making art.”

Julia’s artwork can take her anywhere from five minutes to multiple hours. Some of her biggest fears lie in finding love, becoming a mom one day, and ultimately needing surgery. All aspects of living with IBD that many of us can relate to. Image (1)

The Chronically Honest is as beneficial to Julia as it is the rest of us. Her artwork exemplifies what so many of us feel throughout the rollercoaster ride that is life with IBD. As a 36-year-old, who has lived with Crohn’s for 15 years, I’m constantly amazed and inspired by the work Julia is doing to not only help herself, but others. Her art is raw and genuine—it will speak to you. You will feel seen. You will feel heard. If you don’t already, be sure to give The Chronically Honest a “follow” on Instagram.  She says if you want a custom illustration, you can send her a direct message!

 

12 years on a biologic: What I’ve learned along the way

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It’s been 12 years since I apprehensively went to my GI’s office with my mom, trembling in fear about the what ifs and worrying about the pain of the injection and how my body would respond. One dozen years ago I threw caution to the wind and knew I needed to take the leap. I trusted my physician. There was no other choice. I knew I needed more to control my Crohn’s. I realized my quality of life depended on it. My present life and my future deserved more. IMG-4785

I wish I could tell that frightened 24-year-old girl that a biologic would enable her to fulfill her dream of working full-time in television, that she would go years between hospitalizations, that she would meet the love of her life, travel out of the country, and have two healthy children…all while on a biologic.

This week—I share my 12 tips for navigating life on a biologic and what I wish I knew 12 years ago today.

  1. Needing medication is not a failure. Not everyone has the luxury of being able to “heal their gut” solely with food and that is ok. You are not less than because you need to be on a biologic. You are not giving up or taking the easy way out.
  2. Side effects are unique to each person. Just because one person responded beautifully to a biologic, doesn’t mean that you will. The same goes with horrible side effects. One person’s experience has nothing to do with yours. IBD is unique in each one of us. While some people get a “Humira hangover” and are in pain leading up to their injection, others like me, deal with no side effects whatsoever. Don’t base your experience off anyone but your own and remember to consider the benefit vs. the risk.
  3. Google is not your friend. Prior to starting a biologic or when you are on one, it does you no good to Google and read all the doomsday laundry lists of “what ifs” and horror stories. If you want to educate yourself and truly learn more, communicate with your physicians and connect with fellow IBD patients who understand your reality.
  4. The drug fails you; you don’t fail the drug. Time and time again, I see patients say… “I failed Remicade. I failed Stelara. I failed Entyvio. I failed Humira.” You did not fail anything. This is not a blame game and how your body responds to biologics is completely out of your hands. If a drug doesn’t help limit inflammation and control disease progression, it fails you and you move on to the next.
  5. Have a routine and be compliant. Life gets hectic and being on a biologic must become a part of your routine. It’s helpful to keep track on a calendar or to set up an alert on your phone. I’m old school and write R or L in my day planner…meaning “Right Leg” or “Left Leg”…you’d be surprised, you won’t remember which leg you last injected two weeks ago. I’ve done my Humira injections on Mondays since 2008. I’ve always liked that day of the week because it doesn’t interfere with the weekend and I get it out of the way. No one likes Mondays anyways. Biologics aren’t just something you skip or can forget like a daily multivitamin. For the drug to work you must be compliant and stay on schedule.
  6. You can get pregnant and breastfeed while on a biologic. The most common question I receive from women with IBD is “can I get pregnant on my biologic?” and “can I breastfeed?” …the answer to both of those is a resounding YES. To safely bring a baby into this world, the mama’s health must come first. You need to be a safe haven for your baby and keep your IBD well-managed. By going off your medication, you put yourself at much greater risk for flaring while pregnant and after you deliver. I was on Humira until 39 weeks with my son and 37 weeks with my daughter. To learn more about biologics and family planning check out the IBD Parenthood Project and IBD Moms. IMG_6037
  7. Communicate openly with your GI. Check trough levels every now and then, especially when you’re feeling symptomatic to see if your drug level is therapeutic, if your dose needs to be increased, or if you’ve built up antibodies and need to possibly start a different biologic.
  8. Think about your lifestyle if you’re having trouble deciding which biologic to try. Back when I started Humira in 2008, there were only two biologics for IBD on the market: Remicade and Humira. At the time, I was a morning news anchor and did not share my Crohn’s disease with the public—so choosing to do an injection in the comfort of my home vs. being in public getting an infusion was a no-brainer. Now as a mom of two, I’m grateful for that choice. You can’t beat the convenience of being able to do a 10 second injection on your couch. I have so many friends who spend hours upon hours getting an infusion—having the stress of lining up childcare and allocating that much time and resources to get my medication would be a struggle for me. Let alone needing to get an IV…I know I’m not alone when it comes to having bad veins! I understand you need to go with what your body responds best to and what your physician recommends for treatment…but if the decision rests on your shoulders, I would absolutely choose injection over infusion.

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    Injections at home make chronic illness mom life a bit easier.

  9. Consider yourself “lucky” if you’re starting Humira now. The first 10+ years I was on Humira the injection was very painful. I know of people who had to take anti-anxiety meds just to feel comfortable receiving the injection. In 2018, the Citrate-free (pain free) version was released in the United States. Click here to watch my emotional experience doing an injection with the pain-free formula for the first time, while pregnant. This has been a game-changer for everyone on Humira, young and old. Self-injecting takes some getting used to, but it’s a hell of a lot easier now that you don’t have to deal with any pain. Chalk this up as a big win for the patient community—and if you haven’t made the switch to Citrate-free yet, make sure you do now!
  10. Drown out the Debbie Downers and the naysayers. You are going to come across friends and family who most likely have good intentions…but will question your decision to be on a biologic and offer useless, worrisome advice or stories of their friend’s friend who died from lymphoma or their boyfriend’s dad who had a bad reaction. I remember people questioning me about being on Humira when we were starting our family. We’re already worried enough, having to deal with the background noise can be the biggest pain of all.
  11. Be inspired by the possibilities. We’re all quick to expect the worse or struggle to imagine a life that doesn’t involve daily setbacks. Think of all the good that can come of this and the quality of life the medication can afford you with. Be patient with your body. Be patient with the drug. Be patient with yourself on this journey.
  12. Get preventative screenings. Stay on top of your appointments outside of your gastroenterologist. See your Ob-Gyn and get annual pap smears. See your dentist every six months. See a dermatologist and get an annual full body screening. Talk with your GI about getting “safety labs” every three months to keep a close eye on your results and make sure nothing is out of whack. See an eye doctor annually, even if you think you have perfect vision. Steroids can cause cataracts and IBD can cause inflammation around the eye. If your child has IBD, make sure to stay on top of pediatrician appointments. Being well-informed about all aspects of your health helps protect you from falling victim to any serious side effects.

BONUS: Reward yourself. Let’s face it. Giving yourself an injection or getting an infusion is not the most enjoyable experience. Think about how you can treat yourself when it’s over. Get some ice cream. Get a manicure. Order that cute pajama set online. Lord knows, you’ve earned it. If you struggle self-injecting, stare at a photo of a family member or friend that exudes strength and resilience, they will inspire you to be strong.

I’m not sure what the next 12 years will bring. Will Humira continue to be my go-to? Will there be a different treatment option? Only time will tell, but for now, I’m incredibly grateful that I’ve been able to stay on the same course of treatment for this long and I don’t plan on doing anything to rock the boat. My wish for you is that you’ll find a treatment that works its magic and shows you all that you’re capable of, despite your IBD.

Caregiving During COVID-19: How IBD has helped one couple navigate the unknown

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Rebecca Kaplan was only 20 years old when she met Dan, the love of her life. It was move in day her junior year of college and as she recalls “this skinny guy knocked on my apartment door to ask for toilet paper”. Her family laughed it off – because who knocks on a random person’s door asking for toilet paper – little did they know how that chance encounter would change the course of both their lives. This week, Rebecca explains how her role of caregiver has evolved over the course of a decade and how it’s helped her cope with the pandemic.

Dan and I began dating four months after that initial toilet paper introduction. Two months later, he was diagnosed with Crohn’s disease, right while my mom was starting chemotherapy for Stage 4 Non-Hodgkin’s Lymphoma. As someone who has been plagued with crippling anxiety her whole life, you would have thought I would fold under the stress of two of the most important people in my life receiving life-altering diagnoses at the same time. But I didn’t– in fact, my anxiety motivated me to embrace the role of caregiver.

Dan’s first hospitalization and the colonoscopy that went wrong

We had been married less than a year, living 90 minutes away from our families and our full support system. RK 5His disease had gone unmonitored for years and his new doctor was performing a colonoscopy to see just how bad his IBD had gotten. We were unaware that he had developed a stricture that was so severe that when she pushed the scope through, it nicked the wall of his intestines, causing a perforation and bacteria to get into his bloodstream. Within 45 minutes of waking up from the procedure, he had spiked a 104-degree fever and kept telling me and the nurses he thought he was dying. I was TERRIFIED. But I also found myself motivated by the fear and the anxiety I felt.

Instead of going into a full-blown panic attack, I went into caregiver mode. I knew I needed to be Dan’s voice because he could not speak up for what he needed. It was my job to demand the best care he could get, advocate for his needs, and focus just on him.

While taking care of Dan in the hospital required most of my time and attention, I did notice that I could only do it to the best of my ability if I were also taking care of myself. We lived 45 minutes away from the hospital with a new puppy and no one to take care of him. So, while I wanted to spend 24/7 with him while he was inpatient, I knew that I couldn’t do it for my own sanity. So, I made sure I went home multiple times a day and created a separation between myself and the hospital so I could decompress, eat (SO IMPORTANT), and sleep (ALSO IMPORTANT). Being able to do that meant that I was able to be at the top of my game when he needed me the most. RK 3

It’s been almost 10 years since the series of hospitalizations that started with Dan’s perforation and ended with him having a bowel resection to remove the stricture. And in those 10 years, I’m so thankful that Dan’s health has improved greatly. He’s gained nearly 50 pounds, works full time, works out, plays softball with his dad and brother, and deals with me.

Coping with the COVID-19 Pandemic

With his health stable now, the biggest challenge we’ve been facing the past few months is coping during the COVID-19 pandemic. I have been coping with the pandemic much better than Dan. I jokingly say that I’ve been training for quarantine my whole life, since my obsessive-compulsive disorder has always had me washing my hands, avoiding sick people, and wanting to stay home more than going out. However, Dan does not do well with change – whether that be moving to a new apartment, being diagnosed with a chronic illness, starting a new job, or having life turned upside down by a pandemic. Going from working full-time in an office to being trapped at home, isolating to stay healthy, has been hard for him. His regular life and hobbies have been stripped away from him, and not being able to leave the house and go places has left him stir crazy and agitated. RK 2

Because of this, I’ve put my caregiver hat back on in a different way. I’m not caring for his active disease; rather I’m helping him cope with change and the accompanying stress. I encourage him to do things outside as much as possible, whether that’s taking the dogs on a walk, kicking the soccer ball in the backyard, or going on a hike. I also try and help him see the bigger picture – we’re staying home so that he and our high-risk relatives stay healthy. And I remind him that this is not forever – it will get better and we will get back to normal at some point.

Rebecca’s Top Three Tactics for Caregiving

  1. Make sure you are taking time for yourself – that means eating, sleeping, and doing things to relax and take a break from being a caregiver. This is so important to help you be fully present for your loved one.
  2. Don’t be afraid to ask for help. When Dan had his surgery, our house was a mess and I wasn’t prepared to come home from the hospital with him. So, my mom and sister went to our apartment one night and cleaned/straightened it up for us so I wouldn’t have to do it after spending all day at the hospital.
  3. Find your tribe who will support you as the caregiver. It’s so important to build your own support system separate from your loved one’s support system. Being a caregiver is hard and making sure you have people you can talk to and rely on is so important for your mental health.