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 a women’s wellness apparel company Ohm K, a 28 year old, etc. Today I’m just Katharine, and I’m going to try to stick to that.
I, Katharine, 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 5 years, until now. Below is the story of my relationship with this disease, what I’ve lost, and what I’m finding in ongoing attempts to accept myself, as I am right now, in each moment, every day.
Ulcerative Colitis crept up on me in 2008, although I know I had been experiencing on and off symptoms for over 3 years before. At this point in 2008 I was going to the bathroom about 20 times per day and what came out was strange white mush and bright red blood. I was exhausted and depressed. I couldn’t get out of bed and although I had probably lost a few pounds because of lack of nutrients 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 what was going on to my mother she helped me immediately find a gastroenterologist in the city I was attending college and 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 had been on a drug called Asacol HD for about a year and it was…well…it was sort of working. I had blood here and there but no diarrhea or urgency since 2008 so I just sort of accepted that that’s the way things were always going to be and that I was “fine”. No….blood in stool is absolutely a sign that something is wrong, but I had no idea what that “wrong” could mean because I had ignored learning about and getting to know my disease for so many years.
One day in May of 2014 I began almost having accidents. Running and rushing and looking for toilets during long bus and subway commutes in New York City. Have you ever had to get off a train at Union Square in Manhattan run into a Starbucks, buy bottled water to get a passcode to the bathroom while praying to mother earth that you don’t shit your pants, while casually bolting for a bathroom last shared by half of New York? I have multiple times. I hope you never have to.
I went to my Gastroenterologist to figure out what to do. He wanted to put me on Prednisone, a steroid. A few of the side effects of Prednisone are listed below:
Headache, dizziness, difficulty falling asleep or staying asleep, inappropriate happiness, extreme changes in mood, changes in personality, bulging eyes, acne, thin fragile skin, red or purple blotches or lines under the skin, slowed healing of cuts and bruises, increased hair growth, changes in the way fat is spread around the body, extreme tiredness, weak muscles, irregular or absent menstrual periods, decreased sexual desire, heartburn, increased sweating, vision problems or blindness, eye pain, redness, or tearing, sore throat, fever, chills, cough, or other signs of infection, seizures, depression, loss of contact with reality, confusion, muscle twitching or tightening, shaking of the hands that you cannot control, numbness, burning, or tingling in the face, arms, legs, feet, or hands, upset stomach, vomiting, lightheadedness, irregular heartbeat, sudden weight gain, shortness of breath, especially during the night, dry hacking cough, swelling or pain in the stomach, swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs, difficulty breathing or swallowing, rash, hives, itching. 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. Didn’t like them. Didn’t want them. But my doctor somehow convinced me this was the right route and that after a few weeks we would slowly taper me off of the steroids and I would be back to normal. So, I started taking 30 mg per day of Prednisone.
It felt like a miracle! No more almost accidents. No more blood! I was on cloud 9. I couldn’t remember the last time I hadn’t seen blood in my stool.
Then my husband and I went off on our yearly summer trip to Croatia and it seemed out of nowhere, but I began going to the bathroom about 40 times per day. I was completely out of control of when my body needed to go. After four beautiful days in the sun I spent the next 6 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 even spend time together. This feeling I had lost the ability to really be a wife only increased over the never several months.
I then spent about 20 hours alone making my way back to New York City trying to plug myself up with anti diarrhea meds. Three pairs of underpants later I made it back. I got in a cab and called my mother who talked me out of going to an emergency room. In retrospect I probably should have gone.
I went home. It was a Wednesday night. I was in more pain then I had ever been in my life. My husband wouldn’t be home for another 10 days and I had to make myself better. I couldn’t eat anything. Even drinking water seemed to make me have to go. I would learn over the next three weeks to live off of chicken, rice, saltines, Gatorade and Pedialyte.
I called into work and told them I’d have to work from home. I was also a yoga teacher and taught about 7 classes each week and was determined to teach, which I still did. It seemed for a long time that the only way my body wouldn’t have me sprinting for a toilet was when I was teaching…eventually I did almost have accidents in classes though.
I remember trying to go see my friend in a Broadway show that first weekend being back home and having to leave at intermission because I had to run to the bathroom. I walked back to the subway thinking about making it home in time for my next bathroom run, when my right foot began to scream with every step I took. No swelling, no sign of a break, I hadn’t done anything to it. But then I realized that my body was so void of nutrition and hydration that my muscles were crapping uncontrollably. It took a week for the pain to go away.
I went to my Gastroenterologist that Friday and was sent on a 40 minute walk to a lab for testing. The lab then sent me home to make a stool sample, which I would have to come back with the next day. On Monday we discovered I had Clostridium Difficile, a bacteria. The cause of my developing this is still unknown. This meant two weeks of an anti biotic that would destroy my colon even further but hopefully knock out the Clostridium Difficile. This reduced my bathroom running to about 15 times per day. And when at the end of two weeks of anti biotics I was not feeling any better at all my husband recommended I go see a new doctor. I did, and he and my husband saved my life.
I went to go see my new doctor and knew right away I had come to the right place. He recommended that we do a colonoscopy to determine where my colon was after my attack of Clostridium Difficile, and the state we found my colon in was extremely severe. We planned for me to start a biological drug called Remicade. I would have to wait two weeks for the hospital’s infusion center to get me on their schedule so for the next two weeks he bumped by steroid dosage up to 60 mg per day to help with inflammation. I was still waking up 5 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 at those people complimenting me. How could they not see my constant pain? How could they see what I had lost as beauty?
At this point I was determined I was going to be feeling better, and then the next, out of the fucking blue, thing happened…
I woke up on a Tuesday morning at 1am in excruciating pain, this time in my knees and ankles. I looked for swelling, or discoloration. They were throbbing and wouldn’t stop. I text my bosses finally at 3am to let them know I’d have to cancel my 7:30am yoga class because I wasn’t sure I’d be able to walk let alone teach asana.
So, imagine just for a moment that you had to run to the bathroom 15 times per day/night and now couldn’t even do that. You must crawl, or use your walls and doorways to get you to the toilet. It’s like waking up blind, or at least it felt that way. 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 at all and crying out all night in bed 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 on Wednesday and Thursday but I still couldn’t walk very well. Then Friday it came back with a vengeance and on Saturday I started breaking into full body shaking that I couldn’t stop. Whole body shakes, teeth chattering non stop for 45 minutes. Then fevers. This happened again Sunday. We called my doctor and rushed to the hospital.
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 making it impossible for me to walk and causing me to have hip surgery to flush out the bacteria. I was in the hospital for 12 days.
It look 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 even practice yoga for many months afterwards, let alone teach it. I felt like my entire identity had been ripped from me within minutes when the surgeon tried to tell me this just before rushing in for surgery. When I was told this just minutes before going under the knife I looked into my husband’s eyes and just 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 and hear in that moment, but it would take a very long time to give up mourning that loss. The loss of a part of who 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 came and had hang out parties in my room while I dosed off on painkillers trying to keep up on the conversation. My room became a jungle of flowers, so much so that we had to give them away to other patients because my husband and mother couldn’t be in the room anymore due to all the pollen. My boss and friend came to just be with me while she worked on her laptop. Another dear friend just came and stood next to me so I would have someone there while being in excruciating pain. My business partner and dear friend ran our entire business, work four jobs and found time to come hang out at my bedside. I told my friends I wanted pink crutches and my friend and her husband came and wrapped my crutches in hot pink duct tape. While using these amazing crutches the other day a 5 year old and her dad walked by and I heard her say “Dad, when I get hurt one day, can I have pink crutches?” I say this so you understand how cool they are.
I’ll never know how to thank these people enough. Each one of them saved my life.
After 12 days and with a sepsis free body I left the hospital. I was sure the worst had passed. I was sure I was on the mend.
Recovery was very very hard. It was hard because of fighting, it was hard seeing 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 on my love of teaching. It was hard because I had lost all control of what I could and couldn’t do, and most parts of who I thought I was. I even lost being able to sit how I wanted to with my legs crossed in sukasana which I used to do 10 times a day. I lost being able to sleep on the right side of my body for 6 whole months, something I hope I’ll never take for granted again. Slowly I started to go to physical therapy and give up the crutches and then give up my hot pink cane. Slowly, about a month later I started to try going into my day job….thank the universe the company stood by me through all of this.
And then about a month and a half after leaving the hospital my leg started to hurt again, and my hair started to fall out. I lost my hair. We’re now at a five month point from the start of this story. 5 months of being seriously, seriously ill.
Then I noticed I was having restrictions in movement. I couldn’t sit up straight. I couldn’t put on my underwear or socks. So I went back to my surgeon to find out what was going on.
He sent me for an MRI and called me the next day to tell me the infection was back in my hip and to go to the hospital immediately. I went and they did a hip aspiration again (which is when they take a needle into the hip joint to extract any infected fluid), and then they took blood. There were no beds at the hospital to admit me that night so I went home to wait. I received another call after two days of waiting telling me that my hip was actually not infected at all and that it was just inflamed for an unknown reason. So, I went back to see my surgeon and begged him for a cortisol shot into my hip which should reduce swelling. If it was really only swollen then this should solve my problem and I should be able to go on about my life.
After a very painful injection and a week of waiting I still had absolutely no relief or progress in motion. I went back to see my surgeon and we took an x ray. Then he gave me some very bad news. I had developed Avascular Necrosis, which is lack of blood flow to joints due usually to prolonged steroid use. Fuck. My right femur bone had collapsed/disintegrated/deteriorated and my left femur hadn’t, yet.
My surgeon then sent me off to Baltimore to another surgeon who was going to try to save my hips. (I immediately stopped taking the steroids. At this point I didn’t care what happened because of an abrupt medication stop. Prednisone was literally destroying my body now.) My mother flew back out to New York and she and my husband came with me to Baltimore. The surgeon there 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 restricted movement (no bending at my hips past a 45 degree angle, no twisting, etc.), I started to walk with my cane again on Januray 1, 2015. I’m now in physical therapy again. It’s now the beginning of March and I can say I successfully did my first child’s pose a few nights ago. My healing will be very long as my illnesses took over more than 6 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 anymore 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. As my husband said, BUT I’M ALIVE! Damn it, I think that’s good enough for now.
- Katharine Lucic , Co Founder Ohm K