Earning your Warrior Badge: Jennifer's story of "OSTO-mism"
I thought I would do this post a little bit differently, by beginning with a short introduction. I made the mistake of reading Jennifer's story for the first time on a lengthy commute on public transit--a less than appropriate place to be welling up, if you ask me! Before we get to my interview with Jennifer, I want to share a little bit about why her story meant so much to me.
I have always wrestled with how I am meant to be caring for my fiancé while he suffers because of his Crohn's disease. Now, more than ever, I am concerned about this as we face his next upcoming surgery. Reading Jennifer's words gave me great insight into Peter's day-to-day struggles. I think anyone who loves someone with Crohn's disease would benefit from the read, through the deeper awareness, deeper compassion, and even a deeper love for the person that it inspires.
I know that the surgery will be difficult for him, to say the least... but I also know that God has placed people and resources in his life to help him get through what he needs to. Jennifer's story caused me to reflect on the tremendous blessing that Peter is to our family in spite of, and often times BECAUSE OF, his disease. I know the impact he has had on my life since the beginning, and I remind him often that his perseverance and his struggle do not go unnoticed or unappreciated. He has changed my entire way of thinking and viewing the world by his example--and he makes me live differently (in the same way that Jennifer does this for her two daughters).
So without further delay...
Q: Tell me a little bit about yourself
A: In 2000, as a senior at LSU and also Vice-President of my sorority, I experienced a dramatic and sudden weight loss in concurrence with about 20-40 bowel movements a day. My family actually considered having an intervention-type confrontation once I reached around 85 pounds. I finally shared with my parents what was going on and after extensive testing, I was diagnosed with Crohn’s. I was never told that it was chronic and I would have it forever. I was never told that I would potentially face surgeries throughout my entire life. I was simply given a list of pills, and left thinking, “Whew! Glad we know what’s wrong – now I can return to normal”. I was so wrong. On graduation day, I walked across the stage, accepted my diploma from the Dean of my college, passed out from fatigue and pain and blood loss, and was rushed to the ER. It has never been lost on me that, during an event signifying the beginning of the rest of my life, suddenly it felt like the end of mine.
Over the course of these past 17 years, I have tried every single Crohn’s Disease medication on the market. My insurance required me to “successfully try and fail” each medication prior to approving me for my current medication, Entyvio. The side of effects of some of the previous ones I’ve been on either left me 20 minutes from asphyxiation, with cervical cancer, hospitalized for over 3 months at a time and having to bathe my children with gloves because the germs they carried home from school were killing me, developing Sweet Syndrome (an over-sensitivity to medications) and rendering my body covered in barnacle-like scales from head to toe. Entyvio was my last hope. Luckily, it has been the one that has given me my life, my children their mother, my parents their daughter, and my brothers their sister back.
Q: What has been the biggest challenge with having IBD?
A: In all my “When I Grow Up” fantasies, not once did I consider that I could be disabled at such a young age. At the age of 21, in lieu of living life to the fullest, I found myself watching others do it, and me growing too exhausted to keep up.
Take someone with a college education, an active and curious mind, a drive to work and utilize their education, and place them in a body, which appears to be healthy on the shell but where one’s immune system attacks itself 24-7 - I feel as if I have been on an extended Death Row sentence.
With invisible, or concealed, chronic illnesses, because our disease isn’t apparent, others expect us to function normally – to be working, getting up early, being energetic, engaging in social activities, etc. I began refusing to leave the comfort of my home in fear of defecating on myself or, currently, worried my ostomy pouch would bust and leak down my legs as it has done times before. I fell into a depression so deep, that had I not been blessed with two children, I cannot say that I would be here today. I felt like a burden to my parents, useless to my children, unreliable in the work force, and shady to my friends and family members who would make plans with me and I would be forced to cancel last minute.
One story that vividly stands out to me was when I was at the grocery store with my now-11 year old daughter. We were on the canned goods aisle and, in true Crohn’s fashion, out of nowhere this urge to have a bowel movement hit me so quickly. I must have had a familiar look of horror on my face, because my daughter, Emma, immediately bent to reach a can of corn on the bottom shelf and motioned for me to do the same. When I bent down, I realized what she was doing: she was having me pretend to read the list of ingredients while in a comfortable position until the urge to use the restroom passed. Again, after checking out and heading towards our car, the urge returned. Without hesitation, Emma said, “Mom, your shoe is untied.” Well considering I was wearing flip-flops, this was impossible, but I stooped down and tied my invisible laces until the urge again passed. Moments such as these are almost inevitable, but having my daughter come up with clever tips to get me through them has been priceless.
Q: How has IBD impacted your life in a positive way? What good have you taken away from your IBD journey, and how do you find meaning amidst the pain?
A: One of the greatest lessons I have learned (and STILL must remind myself of to this day) is that nothing good will come from constantly comparing your own life to those of healthy people your age. Nothing feels worse than wanting something you will never have. In our social media-dominated society, this advice is nearly impossible to heed. Having a twin brother, and two younger ones, I have had to sit back and force myself to rejoice in their accomplishments and healthy, happy lives. Of course I want only the best for my siblings and cannot bear the thought to see them ever suffer, but I carry extreme guilt and remorse because, during these celebratory occasions, I found myself resenting their lifestyles or being overly jealous of their good fortune. I was at the point where opening the Facebook app on my phone was comparable to a mental game of Russian Roulette. I knew seeing their posts with their spouses and hanging out together (minus their fourth sibling) would immediately provoke tears. My heart began to fill with hatred and jealousy. “Why me?” “How are my twin’s Chromosome 5 and 10 so healthy, yet mine are keeping me confined in my house and my head?”
I did not fully appreciate this to the fullest extent until a conversation that transpired between my mother and I in November of 2015. In an effort to become more vocal about my frustrations from this life I clearly did not choose for myself, I asked her, “Mom, this may sound really selfish of me, but I cannot help but ask God, ‘Why me? Why not my twin brother or the other two? Why choose the sibling who is clearly not strong enough to face these hurdles.” She responded with an answer that shocked me: “Jennifer, I truly believe your brother would not be able to endure what you have gone through. I know that there is no chance in hell that I would be able to experience all that I have witnessed you go through. You are stronger than any of us and God knew that you could handle it.” I have yet to tell my mother that the conversation from that day was pivotal in me becoming determined to re-write a future I previously saw as only being filled with pain and misery. Here I was, praying and begging God to give me the very strength I saw in my mom as she fought to demand the best care from medical staff and doctors, yet she deemed me the strong one the entire time.
Additionally, once I had my ostomy surgery, I had to train myself to become what I call “OSTO-mistic”. Initially, I wanted nothing to do with that area of my abdomen. I refused to acknowledge it, look at it, touch it, clean it. I had a rare toxic mega-colon, so my stoma size was as large as a piece of salmon. I refused to eat, knowing that there would nothing to clean from the bag if I did not consume anything. And if I did eat, I only did so on the days the home health nurse was coming. Needless to say, I fell into a depression for which I have no frame of reference for. I did not leave the house. I wore my husband’s XXL t-shirts.
In Louisiana, it’s not just the summers that get hot, it’s pretty much an annual temperature of bikini-worthy apparel. As my children began pushing me into trying new fashions in an effort to get me out of the house, my oldest would take pictures of me in fitted dresses and jeans that I never imagined I could pull off. Bravely, I posted these pictures on social media, and the response was so positive and overwhelming that I suddenly wanted to push my limits and try everything on. I was receiving private messages from teen-aged girls who were self-conscious and thanking me for giving advice on how to dress in current fashion while also disguising your pouch.
Q: What are the driving forces in your life that motivate you through the hard times? What helps you the most in getting through the bad days?
A: I was told, because of my low weight and lack of menstrual cycles, that I was more than likely never going to be able to have children. I defied those odds and am blessed with an 11 year old and 3 year old daughter. This disease can take you to dark places and quickly. I spent almost 14 years in either a hospital or my bedroom recovering from 4 colon re-sections, 4 blood transfusions, 2 fistula drains, 2 C-secions, a full hysterectomy (from cervical cancer caused from one of my Crohn’s IV medications), and an ostomy surgery. When I first felt better than I had in over a decade from my Entyvio infusions, my 11 year old cleverly stated, “My mommy is in intermission!” And this is actually quite genius – because we will never fully be in remission until there is a cure. Additionally, my children believed in me when I did not. My oldest sent a love letter of sorts via Takeda Pharmaceutical’s website, thanking them for “giving me my mommy back”. I was shocked when they called me a week later and asked me to join on as a Patient Advocate. I now travel the country and share my journey. Since then, I have become more actively involved with the CCFA, and have attended two CCFA Days on Capitol Hill in Washington, D.C., formed and led a team for the Take Steps New Orleans 2017, while serving on the Planning Committee. Honestly, I would more than likely still be bed-bound if it were not for Emma believing in me and pushing me to my fullest potential.
THIS is what drives me daily now. Pushing my limits and posting encouraging stories so that a newly diagnosed patient won’t have to spend 16 years learning things the hard way – the way I did. Sure there are still extremely tough days, but I now quit asking, “Why me, God?” and say, “Thank you, God.” I truly believe He wanted me to experience this journey so that I could be a voice for the voiceless.
Q: If you could share one thing you’ve learned from your experience with the rest of the world, what would you say?
There is a reason the rear view mirror is a lot smaller than the windshield.
Why live in or bring up the past? We don't walk backwards. We don't talk backwards. We don't drive backwards. We don't undress before we go to work and go to work naked.
When you first get diagnosed with IBD, the pendulum swings so far opposite of the life you were initially accustomed to. And, you believe the ONLY way to get back to normalcy is to be "in remission" or "cured", because that pre-Crohn’s life is what resonates with you. What we MUST accept if we are to taste any morsel of normalcy, is that this is our "new normal". This is our journey that we are destined to travel.
Would I have gone to LSU had I known that my senior year I would be diagnosed with Crohn's Disease? Would I have brought 2 children into this world had I known the guilt I would feel from being bed-ridden for 15 years on and off with multiple surgeries and a never-ending pain and fatigue? If we knew the path that lies before us, we may actually change the way we go about things...causing us to potentially miss out on some of the most beautiful parts of our lives. Don't distance yourself because of your pain or your fears or your situations because when you live in your "what ifs", you will miss out on beautiful memories. The dance of life is worth all the pain and consequences we have to endure.
Q: At this point in your life, what would you tell yourself at your worst to help you through it?
A: With so many blogs, private social media groups, and "you are stronger than your disease" posts out there, I think many patients underestimate that they too are IBD Warriors or Patient Advocates. This isn't some title earned by attending the most CCFA-focused events, donating the most to research, accruing the most followers, traveling the nation to share your story, or posting daily positive affirmations to fellow patients. Here are just a few activities that I am certain we have found ourselves engaged in and should give ourselves more credit for, because these, in my opinion, have earned you a Warrior badge:
Sitting through a college lecture, work meeting, or church while simultaneously under pain on a scale of 7 or more.
Sharing the details of your current bowel movements on social media (and not giving a sh!t what anyone will think).
Thanking God for blessing you with children, yet overwhelmed with guilt that they may too one day develop this disease, but carrying on and parenting through the pain and guilt.
Having your ostomy leak or burst in public places and, instead of crying and planning a pity party, you immediately say, "I need a beer!"
Showing up for your monthly/regularly scheduled IV treatments, despite knowing it will likely take about 3-9 IV attempts and will leave you bruised and sore each time.
Lastly, simply being there for a newly diagnosed patient or one undergoing a difficult flare, and encouraging just one person and letting them know YOU GET IT makes you one helluva warrior!!