Katharine Elkington shares the story of her battle with Ulcerative Colitis and what it taught her about strength, beauty, and identity. (Photo: Rachael Shane)
Seven months ago if you had asked me who I was I would have told you I was a wife, a badass yoga teacher, struggling actress, co-founder of women’s wellness apparel company Ohm K, and a 28-year-old. Today I’m just Katharine, and I’m going to try to stick to that.
I have Ulcerative Colitis, a disease that affects my large intestine. It causes ulcers and open sores in my colon, and urgent and frequent diarrhea. It comes in waves called flare-ups. I haven’t been in remission for five years—until now. Ulcerative Colitis crept up on me in 2008. I was going to the bathroom about 20 times per day. I was exhausted, depressed, and couldn’t get out of bed. I was convinced I was “fat” because my intestines were inflamed and sticking out, so I went to the gym twice per day.
When I finally confessed to what was going on, I had my first emergency colonoscopy at the age of 22. I was diagnosed with Ulcerative Colitis and started a treatment. This treatment lasted a year or so and I was feeling well enough to stop taking my prescribed medication. Really what was happening was I was ignoring my body. Denying my illness—an illness that there is no cure for. The only way to cure Ulcerative Colitis is to remove your colon.
It went on like this for a few years. I would go on and off meds as I “felt” like and changed doctors frequently. I was ignoring my body and the disease so fiercely that I didn’t even learn to spell colitis correctly until I had been diagnosed for six years.
Then it all happened. I was convinced I was sort of in remission, but in May of 2014 I began almost having accidents. Accidents that rushed me off NYC subways into different Starbucks’ bathrooms while praying to mother earth that I wouldn’t s–t my pants.
I went to my Gastroenterologist to figure out what to do. He wanted to put me on Prednisone, a steroid with many dangerous side effects. Here are just a few of the side effects of Prednisone:
Dizziness, inappropriate happiness, extreme changes in mood, changes in personality, bulging eyes, extreme tiredness, irregular or absent menstrual periods, decreased sexual desire, increased sweating, vision problems or blindness, sore throat, fever, chills, cough, seizures, depression, loss of contact with reality, confusion, shaking of the hands that you cannot control, numbness, burning, or tingling in the face, arms, legs, feet, or hands, vomiting, irregular heartbeat, sudden weight gain, shortness of breath, difficulty breathing or swallowing, hives. Oh yeah, and one no doctor or website ever mentioned: Avascular Necrosis. But we’ll get to that later.
I immediately said I was uncomfortable with steroids. I didn’t like them, I didn’t want them. But my doctor convinced me this was the right move and I started taking 30 mg per day of Prednisone.
And it felt like a miracle! No more almost accidents. No more blood! I was happy. I couldn’t remember the last time I hadn’t seen blood in my stool.
When my husband and I went to Croatia for the summer, out of nowhere I began going to the bathroom about 40 times per day. After four beautiful days in the sun, I spent the next six lying on a bed close to the bathroom. This is about the time I can say that I started losing my ability to have a proper relationship with my husband. I started losing him, because I had to become entirely devoted to trying to take care of myself and didn’t have the strength to take care of him or the health to spend time together.
I would learn over the next three weeks to live off of chicken, rice, saltines, Gatorade and Pedialyte. As a yoga teacher I was I was teaching about 7 classes each week and was determined to continue. It seemed that the only time my body wouldn’t have me sprinting for a toilet was when I was teaching—eventually, I did almost have accidents in classes.
After a week of testing we discovered I had Clostridium Difficile. The cause of this is still unknown. I spent two weeks on an antibiotic that would destroy my colon even further and ending up bumping my steroid dosage up to 60 mg per day to help with inflammation. I was still waking up five times a night to go to the bathroom and going about 10 more times during the day. I had lost about 16 lbs. and still couldn’t gain any of it back. For a month now I had lost my ability to eat, my ability to sleep, and a massive amount of weight.
It was around this time that I started getting a lot of compliments about my appearance. I had lost those 16 pounds due to lack of nutrients, but still had a summer tan and defined muscles from yoga. My body was quite literally dying, but I kept hearing how great I looked. I was so angry with those people for complimenting me. How could they not see my constant pain? How could they see what I had lost as beauty?
I was determined I was going to be feeling better, and then the next thing happened, out of the blue. One morning I woke up in excruciating pain, this time in my knees and ankles, but with no swelling or discoloration. I canceled my 7:30am yoga class because I wasn’t sure I’d be able to walk, let alone teach.
Imagine just for a moment that you had to run to the bathroom 15 times throughout the day and night and now couldn’t even do that. You must crawl, or use your walls and doorways to get you to the toilet. I had now lost my ability to walk and would soon realize that I wouldn’t be able to call myself a yoga teacher again for a very long time.
After no sleep and crying out all night in pain, I called my doctor at 8am. He assured me this was arthritic like symptoms brought on by my Ulcerative Colitis flare. I took his word for it. The pain pretty much subsided over the next two days but I still couldn’t walk very well. Then that weekend, I started breaking into whole body shakes for 45 minutes. Then fevers. We rushed to the hospital where we discovered that I had septic blood. I had contracted Salmonella and it had gotten into my blood stream through my damaged colon. It then crept into my right hip. I was in the hospital for 12 days, and I had hip surgery to flush out the bacteria.
This is my body today. This is my body when it’s able to process nutrients, after three surgeries and almost a year of illness. This is my body in remission. I have fat, I have scars, and I have my life ahead of me. (Photo: Rachael Shane)
It took many painful days after the surgery to realize I wouldn’t be able to walk for months on my own and wouldn’t be able to practice yoga for many months afterwards or teach. When the surgeon tried to tell me this just before rushing in to surgery, I felt like my entire identity had been ripped from me within minutes. I looked into my husband’s eyes and sobbed. He looked at me very sternly and said, “But you will be alive. I almost became a widower in the past few days. You will be alive.” I knew he spoke the most important truth I could learn from all this, but it would take a very long time to give up mourning that loss of who I thought I was.
During this time, a time of near death, I experienced the most incredible and fierce expressions of love. My husband who had already worried him self to a near mental breakdown was there every second I needed him. My mother traveled from across the country and sat with me all day and night for my last 7 days in the hospital. My friend bathed me when I couldn’t do it myself, and held my hand until my husband got there to rush me into surgery. My best friends and came and had hang out parties in my room while I dosed off on painkillers trying to keep up on the conversation. My business partner and dear friend ran our entire business and found time to come hang out at my bedside. I’ll never know how to thank these people enough. Each one of them saved my life.
Recovery was very hard. It was hard because I saw how much my illness had hurt my husband. It was hard because I couldn’t do anything but sit and be in pain. It was hard because I had to give up my love of teaching. It was hard because I had lost all control of what I could do, and most parts of who I thought I was. But I started physical therapy and slowly stopped using my crutches and eventually, even my cane.
Then about a month into healing, and five months from the beginning of this story, my leg started to hurt again, and my hair started to fall out. I noticed I was having restrictions in movement. I couldn’t sit up straight. I couldn’t put on my underwear or socks. It turns out that I had developed Avascular Necrosis, a lack of blood flow to joints due usually to prolonged steroid use. My right femur bone had collapsed and deteriorated—my left femur hadn’t, yet.
My surgeon sent me off to Baltimore to another surgeon who was going to try to save my hips. The surgeon did a core decompression to my left femur bone, drilling small holes into it to try to increase blood flow in the hopes that it wouldn’t collapse. To the right and collapsed femur, we ended up doing a full hip replacement after attempting a bone graft.
After six long weeks of crutches and extremely restricted movement, I started to walk with my cane on January 1, 2015. I’m now in physical therapy again. In March, I successfully did my first child’s pose. My healing will be very long as my illnesses took over seven months of my life.
In those months I lost all of the parts of myself that I thought identified me. I couldn’t teach yoga anymore and still probably won’t for months. I could hardly call myself a wife or someone who could actively participate in a relationship. I couldn’t call myself an actress because I couldn’t work. I lost my hair, I lost the ability to do with my body what I liked, lost the ability to even leave my apartment. And I don’t think any of that is good. And I’m not glad it happened to me and my most loved people, but I can say that it is helping me feel less need to identify, less need to derive love and joy from those things I think I am or think I’m good at. Right now, I’m just Katharine trying to put a life together. And there is a lot less pressure coming from myself to be great at anything, or to get approval from others for those activities or accomplishments. But as my husband said, I’M ALIVE, and I know from those months that I am loved. Damn it, I think that’s good enough for now.