Marathon #32 – 26.2 for Kerry
I am honored to be asked to share my story for Coach Marc’s 26.2 quest. Coach Marc was a source of confidence and support when I decided to try to complete a ½ marathon with Team Challenge in February 2016. He gave me the incredible gift of believing in me even when I didn’t believe in myself.
I have ulcerative colitis, diagnosed in late 1993. My story includes diagnosis, surgery, and living, working and playing as a person with IBD. There are a lot of sentences with “I” in this story, but absolutely none of it happened without the support of family and friends. Highlights include making a family, working hard in positions of increasing responsibility, doing impactful work that I love, and participating in 4, soon to be 5 Team Challenge ½ Marathons to raise awareness and funds for the disease.
I was diagnosed with ulcerative colitis in late 1993, when I was technically still a newlywed. The diagnosis threw me, my husband and my whole family, into a new world of medications, doctor visits, hospitalizations. It took some time figuring it all out, starting with the “simple” question of what I could digest when I was experiencing a flare, extending into the complexity of how to incorporate this diagnosis into an already full life. Finding that first new normal was frankly a struggle, both physically and emotionally. When diagnosed, I was an independent person, a professional person, a super social person who loved food and drink and new experiences. I am still that person, but my new normal included sometimes being sick for weeks at home, or being hospitalized, missing work, missing family gatherings and having to develop a deep knowledge of where the closest bathrooms were for sometimes urgent dashes. My diet became super simple – baked potatoes were a mainstay, instead of different recipes and restaurants every week. In addition to the physical impacts, the emotional ones took a toll. I felt very exposed; everyone knew when I was running to the bathroom! Harder still was that I could feel people treating me differently. I appreciated, and NEEDED, every bit of the care taking, compassion and concern, and at the same time, I just wanted to be normal. I remember telling my sister I didn’t want to be Kerry Colitis, with my disease being the first thing people thought of when they thought of me.
That was kind of a tall order, because I was pretty sick. I was on massive doses of prednisone to put me in a remission. Prednisone is amazing, and awful. It reduced the inflammation, and with that, the persistent pain, (left side for me) and let my body rest from hourly trips to the bathroom. The trade-off though was hungry horrors, moon face, hair growth, fluid retention, weight gain, and crazy bursts of energy and emotion. And, later, an early diagnosis of osteoporosis.
In the new normal, I was suddenly a new category of person, with a pre-existing condition that, at the time, could preclude me from being covered by an insurer if I ever decided to work somewhere else, or if my employer switched health plans. Being so sick, I was worried about my employment and my ability to continue to earn money and have health benefits. My husband was newly self-employed as a lawyer. There wasn’t a lot of income from his practice then, and my income, and my health benefits, were critical to our financial stability. Health benefits will always be a priority for me, as is the concern that an employer may (illegally) decide not to hire me, or decide to limit the work I do for them, because of my diagnosis.
During this time, the Crohn’s & Colitis Foundation was a useful source of information and I read the pamphlets and learned new vocabulary, and tried to educate my employers about IBD. I attended a patient symposium and talked with other patients about the challenges of finding doctors and figuring out what the disease meant for my future. I listened to IBD hero Dr. Mark Peppercorn present at that symposium, and left determined to get treatment from him, and not just listen to him present. He was a wonderful doctor! I was fortunate to benefit from his care for so many years, before he retired from seeing patients.
As time went on and I adjusted to this new normal, and started to feel better, there were other impacts. I love kids, and had always said I wanted six. Post diagnosis, I wasn’t sure I could have any, a little because of the disease, and a lot because of the drugs that I was reliant on for “health”. More concretely, when we were house hunting about a year after diagnosis, we reluctantly had to rule out one house that I loved, because it had just one bathroom, on the first floor, far away from the upstairs bedrooms. It just wasn’t practical with my new normal.
Everyone’s disease plays out a little differently. For me, while steroids always put me in remission, I would get sick again as I tapered off them. In the 90’s, there were very few if any, other medication interventions available, and the ones I tried, including a brief attempt at using nicotine patches (!) didn’t work for me.
Having worked through the options, and continuing to cycle through periods of flares and remission, Dr. Peppercorn suggested that I needed to look at surgery, and gave me the names of a few surgeons to interview. I intellectually knew that surgery was an option; however, it wasn’t the message I was expecting to hear. And, since I was returning to work after that appointment, I had to pull myself back together and head into the office, with my head spinning with possibilities and questions. That day and the following ones, it was an emotional experience to process the need for surgery. And within a short time, I had to explain to family members, and to my employer. While I had answers, I certainly wasn’t an expert in the topic of surgery and recovery, and frankly, in the face of this big and drastic unknown, I was a lot hopeful, and more than a little scared.
Surgery day came fast. I trusted my surgeon and really liked him. To get ready to go, I interviewed surgeons, talked patients who had had the same surgery, and explained it to my friends and family. I made plans to be in a best friend’s wedding 3 months after surgery, and I listened to Jimmy Buffett on repeat because it made me smile and dream of hot summer nights without a care in the world. I don’t recall anything post-surgery until day 2. Removal of the large intestine requires a full open surgery, so I came to with 40 or 50 staples covering an incision that ran from my breast bone to my pubic bone. I’m told that on that first day I was in a lot of pain, and that all I would say was ‘F#%K, F%&K, F&#K’ much to the consternation of my family and the amazing nursing staff. Along with much improved health, this experience gave me a chance to see nurses in action – I have undying respect, admiration and affection for nurses now.
Once the haze broke on Day 2, they had me up and walking; I was dumbfounded. It hurt beyond description, but with a ton of help from the nurses, I did it. I was in hospital for 3 weeks post-op. It was a long time, especially with no food. I needed help with so much, and each of the nurses helped me. They taught me about my body and how it would function in the next new normal, and taught me about how the hospital worked. I learned about rounds, and how to tell if the docs thought I was getting better by what time rounds were, and how many people were on the rounds crew. I experienced multiple NG tube insertions while my digestive system woke up, and remember my surgeon at the foot of my bed one night, in evening dress, encouraging me as I fought to feel better. I really loved Dr. Mowschenson then, and always will.
I gradually was able to take independent walks with my IV pole, making certain to be back for blood draws and medication delivery. I visited the nursery at the end of the hall, because seeing the tiny babies in their bassinets took all thoughts of pain and worry away. When orders came to get ready to go home, a young doctor arrived, ready to remove my staples. I was simultaneously elated and terrified, because taking this next new normal out of an institutional setting was exactly what I wanted. And I was going to get to EAT! My mom prepared a feast of flavorful food for me, because after so long without food, I was desperate for tastes! I’m sure I only managed a few bites, but they were so tasty, and so appreciated. When I got home was when I really began to learn about recovery, which is so much harder than surgery. It can be so slow and frustrating, and it was hard to get excited that I could walk around the block.
I continued my quest to figure out how to have my diagnosis not define me, but to take up an appropriate portion of my identity. My wish to not be Kerry colitis changed into a wish to not be Kerry colon-less. As I healed, my favorite people became the ones who would ask me how I was feeling, and be able to join me in some humor. This was especially welcome as I learned how to deal with painful bowel obstructions and food that didn’t agree with my new normal, like very spicy (good bye jalapeños).
After a couple of years, I got pregnant and experienced an eventful ‘high risk’ pregnancy. This next new normal included a painful perineum abscess that appeared when I was 10 weeks pregnant. Dr. Mowschenson managed that on an outpatient basis until I reached 20 weeks, when they could bring me into an operating room and give me a spinal so they could truly take care of the abscess. Enduring that healing, in a very delicate place, while growing what was ultimately an 8 lb. 13 oz. baby, was exquisitely painful. When faced with the possibility of another abscess surgery 16 years later, I was beside myself with dread at the thought of having to endure that healing again. And, as a private person who didn’t want to have attention drawn to me, I now had to suck it up and bring a pillow with me to sit on at my desk and in lots of meetings at my very corporate workplace.
J-pouch surgery leaves a very small portion of the large intestine, and, while I haven’t had a ulcerative colitis flare since surgery, I did develop a pouchitis flare late in my pregnancy. The docs prescribed antibiotics, which were certainly unheard of in the What to Expect When You are Expecting rule-book of pregnancy. The skillful compassionate medical staff taught us about the impact of maternal distress on pregnancy though, and how to weigh the benefits of interventions. The antibiotics allowed me to feel better, and I delivered Jackson by C-section when I was 41 weeks pregnant.
One of the many joys of that day was seeing one of my beloved nurses who cared for me post-colectomy in 1996. In the interim period, Michele had switched to maternity nursing from surgical, and told me when she saw my name on the schedule, she arranged to stay and do my intake! Nurses are amazing.
From 1999 to 2015, life bumped along. We became a family, and I learned how to take care of baby and myself, even while I was sick. Still, sick was so much different with a j-pouch! No prednisone, no regular blood draws, a full life with a great kid, and meaningful work. I came to terms with having one baby instead of six, and have loved all of his friends that much more. I went back to school, because I needed to work and wanted training in field that I thought would support a reduced schedule. I had annual scopes, and bouts of pouchitis, I missed events and experienced occasional hospitalizations. And when a friend was hospitalized, I used all my hospital experience and talked frankly with the kids about IVs and hospital beds. I was so grateful that my experience could be put to use helping others.
For work and school, I decided that information about my health was strictly need to know. I was still concerned about people treating me differently, and didn’t want to give anyone reason to do so. So, when one of my school internships offered me a project focusing on siting public toilet facilities, while I burst out laughing, I didn’t volunteer why. I just knew that I had to take that project. I learned a lot of practical things about toilets, and about change.
After graduating, I continued to work on emerging public health issues, with a focus public health preparedness. We were super busy parents, raising a kid, managing a house and both working. I gradually became more open about my health, and learned manage other peoples’ reactions and perceptions. I was proud of myself for what I was able to do, and taught our son that there wasn’t anything unusual about me, except that I still used the bathroom a lot.
In 2014 I turned 50, and felt so strong and ready to take on the world. Six weeks later, I broke my ankle in a pothole and then wore a walking cast for months. Memorial Day weekend 2015, I developed a fever and swelling at the site of my old abscess. I benefited again from skilled and caring medical professionals who sorted out how to treat me.
Once this was resolved though, I was ticked off. Nothing about this 50th year had gone remotely according to plan. I felt compelled to do something to shake things up, change the vibe and reclaim my vigor. That something was to train with Team Challenge to complete a ½ marathon.
Truthfully, I have never been particularly athletic. I’m just old enough to have missed the Title IX push that made organized sports a normal and expected thing for girls. But I did have a lot of grit, and I really wanted to fight back against this disease.
When training started, I was intimidated by the athletic people on the Team, but I had a goal, and a best friend who said she would do the race with me. I brought my grit and determination to the solid training structure and a team that included veteran runners who were also IBD patients. Training was an adventure! I loved spending every Saturday with people who didn’t bat an eye about bathroom stops. I increased my mileage, as slow as a sloth, but was still out there, and when my bestie broke HER ankle a week before the race, I was sad, and I was also ready to complete the race with my new Team Challenge family.
Now when I get sick, I still get frustrated and downhearted because I’m sidelined, and I still fight the fear that that my strength isn’t going to come back, but I also know what I’m capable of in a deep unshakable way that sustains me.
Team Challenge energized me in a major way. So much so that when another dear friend was diagnosed with IBD later 3 months after my 2016 race, I brought every bit of my strength to her. We jail broke her out of her hospital room, and then I recruited her to join me training for the 2017 race. I did so remembering being in a hospital bed 23 years before, not knowing if I would ever be able to do the things I had done pre-diagnosis, and scared about what my life would look like. I knew I could help her see that she could still do so much.
We crossed the finish line together in 2017.
I learned recently that when I first mentioned doing that revenge ½ marathon, my best friend was worried that I might not be healthy enough to complete the training or the race. Thankfully, she chose not to voice that concern, and I am so grateful. I had the same worry, and I’m still not sure that I would have been confident enough to push forward if she had voiced any skepticism.
Since joining Team Challenge, I’ve spoken about my patient experience for a pharmaceutical company, and I’ve gone to Congress for the Crohn’s and Colitis Foundation lobby day, bringing my son along to share in the experience. I regularly talk to parents whose children have been diagnosed with IBD, to offer support and confidence.
February 25, 2019 was the 23rd anniversary of my j pouch surgery. I am deeply grateful for the support I’ve received from family and friends over the years, and I am proud of what I’ve accomplished with that support, professionally, personally, physically. I’m not cured, but I’m healthy, active and determined to use my experiences to help others.
Running 26.2 for Kerry!
Marathon 32 – Recap