I’ve only written about my Ulcerative Colitis, my struggles, my drug failures, and coming to terms with my disease a few times here on Love, Kate Bray, but those posts have certainly been some of my best (in my opinion, and statistically). The support I’ve received and the encouragement that’s been thrown my way has not been forgotten. Believe me. I struggle with so many emotions when thinking about my illness that it’s hard to get my thoughts to come out coherently in my writing. It’s hard enough to sort through them in my head, with my partner, my friends, my therapist… to share what I’ve been going through and how I’m dealing with literally anyone who wants to read is overwhelming, to say the least.
That said, I want to try my best. I know I’m not alone in my struggles with IBD and I feel like a lot of what I’m going through can and will resonate with many others, whether they’re dealing with similar chronic illnesses, mental health concerns, or any other recurring struggle. I relaunched my blog with the intention of making it a place for celebrating the joy of living and being unapologetically myself. By that, I mean I want to be real, open, and honest. It’s important for me to create a space that celebrates the beautiful parts of life, but simultaneously recognizes that not every day is beautiful or curated like an instagram feed. I’m sick and tired of caring what other people may or may not think about me. I’m a real person with a real, serious illness who happens to enjoy the beautiful (some say frivolous) things in life. I can be both. I can write about both. I can have shitty, (LITERALLY VERY SHITTY, AS IN I DEAL WITH A LOT OF POOP) horrible, painful, gross, embarrassing, days where I’m a mess due to the drugs I have to take and the pain I suffer and still find joy in life’s simple pleasures.
I was diagnosed with my IBD (irritable bowel disease) when I was 10 years old. The way I found out, looking back, is a little bit funny but it was scary at the time. At age 10, my family still owned and operated a bed & breakfast in the Annapolis Valley. The property itself was quite large, but our private living quarters were small. This meant that my sister and I shared a bedroom. With a 5 year age gap, I was anxious to have my own space. Fortunately, we did have our own bathroom in our room. I spent a LOT of time reading late into the night in our bathroom long after my younger sister had gone to sleep. The walls were the perfect shade of “lavender” that I picked out and painted myself with the help of my mom. The door to the bathroom even had a tole-painted sign with a picture of a girl on a potty with a book with the words “The Reading Room” daintily painted in black. Point being, I became comfortable spending lots of time in the bathroom by choice at an early age reading book, after book, after book at all hours of the night.
At one point in my life (I don’t remember how old I was) I had a normal bowel movement but it had a small streak of blood in it. I asked my mom about it and she said it was probably either something I ate or I had a small cut “in my bum” caused by some rough food (LOL) that caused some blood to come out in the toilet. I accepted that answer and thought nothing else of ever having blood in my stool again. I honestly don’t remember when I started having frequent, bloody diarrhea. I have to assume that it happened slowly, over a long period of time. All I know is that it became a bit of a joke and really not much of a bother for me to be spending a LOT of time in the bathroom. My parents assumed (rightfully) that I was using my time in there as an excuse to keep devouring my books (note: there had been more than one occasion where a punishment would be taking away my book as opposed to taking away TV privileges, because with a book a time out or something similar would have been no punishment for me at all). I think I thought of it as that way too. I didn’t really care how much I was in the bathroom because it gave me time to read. I knew I was experiencing a lot of stomach pains, but I always had. For as long as I could remember I’d had a “nervous stomach”. My stomach would twist and turn at any form of stress, nervousness, guilt. That’s where it manifested for me. I didn’t think to say anything to my parents because I’d become so used to it.
We were out to dinner at Pizza Delight some time in the late spring. I think it was after my dance recital. I went to the bathroom and I think my mom came in to check on me after I’d been gone for a while. I probably didn’t have a book with me so I didn’t really have an excuse to be taking forever. I showed my mom the carnage left in the toilet. I still remember the look on her face. I don’t remember much else, but I think that’s when it clicked that fire engine red blood and not much else in the toilet wasn’t normal. I don’t know what I thought it was, or how much time had passed, or what happened after, but pretty soon after I was on my way to the IWK Children’s Hospital for a colonoscopy. I remember hearing that I might have a “disease” and absolutely freaking out at the idea. To 10-year-old me, disease=cancer. Or something like it. “Disease” was a dirty word. “Disease” meant “you’re going to die.” Diseased.
Again, I don’t know how much time passed between the Pizza Delight incident and actually being admitted to the hospital, but from what I can remember, I feel like things went rapidly downhill from there. There’s a picture of me in the last days of grade 5 (I can’t find it, but I can remember it clearly) before I went into the hospital where I look like a holocaust survivor. I was brutally thin and pale as a sheet. I remember being in Superstore and collapsing onto a cooler because I was in so much pain I couldn’t stand up. On our 1 hour drive from the valley to the IWK we packed a clean, empty ice cream bucket in case I had to poop in the car…
To make what is already a long story a bit shorter, my one scheduled night in the hospital turned into 6. My first colonoscopy showed that I clearly had Ulcerative Colitis. I cried and cried finding out that I was diseased. I was nasty. A sign was taped to my door warning hospital staff not to enter without the express permission of my attending physician. I was so angry at the world. I just wanted to be normal like everyone else. I missed my grade 5 D.A.R.E graduation barbecue for this for god’s sake! Oh if I only knew how many more things I’d miss in the future… My poor mother slept in my hospital room every night dealing with me; the incredibly undernourished, pain-stricken, bloody-diarrhea spewing, angry-at-everyone-in-the-world 10 year old me. I am truly not worthy… I was pumped full of Prednisone and iron supplements and sent home. I didn’t yet understand the long road that awaited me. The many hospital visits to come, the medications I’d try, the ups and downs I’d experience. I just knew that I didn’t want anyone to know that I was diseased. It was my secret to bear.
I was instantly on something like (at least) 60 mg of Prednisone. If you don’t know what Prednisone is, I invite you to google it. All you really need to know is that it is an incredibly cheap, INCREDIBLY effective drug that will really pull you out of dire straits, but that’s the only positive. It’s as though someone was assigned the task of creating a drug whose side effects had the sole purpose of making the person taking them as undesirable as possible within the confines of western beauty (and personality) standards. By that, I mean that some of the common side effects are: rapid weight gain, insatiable appetite, mood swings, insomnia, rage, emotional instability, “moon face” (conventionally unattractive extreme swelling and rounding of the face), severe acne, excessive hair growth and sweating. I’m not making this up… Basically, it’s the worst and best drug on the entire planet. Oh, and you can’t come off of it quickly because it f*cks with your adrenal glands and it can be incredibly dangerous. Awesome. Exactly what every 10-year old girl needs pre-puberty.
That summer I gained about 30 pounds. Keep in mind that I started out quite underweight and I was probably like, 4 foot 10 MAX at the time. My face ballooned, my body was unlike it ever had been before. I was angry, moody, uncomfortable, and dealing with major acne before all of my peers. My already slightly-more-hairy-than-average arms grew a thick layer of hair that prompted a bully to call me a “gorilla”. I was so, so sad. And remember, my disease was a secret and I couldn’t let anyone find out.
This is a topic for another (maybe) eventual post, but I firmly believe and trace back my history of eating disorder behaviours to my time on Prednisone in my formative years. The massive change in my body and struggles thereafter led to absolutely obsessive calorie restriction (starting in grade 6!) and later binging and purging at other points in my life. These feelings, behaviours, and thought patterns will last for the rest of my life; of this I am certain as they’ve been relentless now for 14 years. For anyone who is concerned, I regularly work with a licensed therapist.
I regularly received blunt comments on my changed appearance after returning to school and dance lessons come September of the same year. 11 & 12 year-olds (and ballet teachers…) are ruthless and don’t hold back when they see intense acne, weight gain, facial swelling, bloating, and excessive hair growth. I told maybe two friends about what I was going through and I was constantly paranoid that my secret would be exposed.
I stayed on Prednisone through most of my teens, only coming off of it after months of weaning for weeks at a time until it was necessary for me to go back on a low dose to maintain remission (maybe 5-10 mgs). A total of 8 years on Prednisone has wreaked a lot of havoc on my body and my mental health. I have osteopenia (the beginning stages of osteoporosis) and my doctors have told me that my growth was stunted and I could have expected to have grown to be 2 to 3 inches taller than my current and unchanging 5’2 stature. In addition to Prednisone, I have been taking immunosuppressants and anti-inflammatories on and off since diagnosis. With this combination of drugs I remained mostly healthy for all of my teen years and at times felt like I didn’t even have a disease.
It was in my early twenties that my colitis really started to flare, and from what I can gather this is pretty common. I was under more stress than usual in university and it was in my fourth year that things really picked up. This was truly horrible timing. For those of you who don’t know, within my 4 year honours degree, I completed 3 years of an intense classical acting program. I was a full-time student in my 4th year in addition to almost 30 hours of rehearsal per week. During these flares it wasn’t unusual for me to dart out of rehearsal to run to the bathroom with only a moment’s notice. I thank my lucky stars every day that I never had a moment of urgency on stage during a show. I really don’t know how I got so lucky. Somehow, though, like I touched on in this post, this perpetual sickness had become my normal. For me, giving in (in my mind it felt like giving up) was not an option. Getting into the acting program was (and remains) one of my proudest achievements. In that year of school I had some really wonderful parts to play and there was no way in hell that I was letting it pass me by. I’m grateful every day for those experiences, but sometimes I can’t believe how much stress I allowed my body to go through.
It was after graduating from university that things really went downhill. I truly believe that my body “stuck it out” until it had the opportunity to give up. You can read more about this period in my life (when I almost died due to incredibly severe (chronic) anemia) here.
If you’ve read this post, you know that I had a whirlwind love affair with Remicade. My wonder drug that left me in the dust. After Remicade and I broke up, I moved to a new biologic drug called Entyvio (another drug delivered by infusion). I started on Entyvio in October 2016. I heard really great things about it and my health care team was very confident that I might see success with it. Now, all of the literature is clear that it can take “a while to work”. A lot of things say 14 weeks. I’ve been on it for almost 9 months now and we still aren’t sure if I’m responding. Basically, it’s complicated. Why? Well, we were worried that I would start to flare while in limbo between waiting for Entyvio to work and Remicade being out of my body. Being so averse to Prednisone, my Nurse Practitioner prescribed me a different type of steroid called Budesonide MMX to tide me over while we hoped Entyvio would kick in. Budesonide works locally in the gut and doesn’t cause the same horrible side effects that Prednisone does (in my experience). Fortunately for me, the Budesonide seemed to keep me healthy and we thought that maybe the Entyvio was working too. My NP didn’t want me on steroids for too long (and I was experiencing frequent migraines on the drug) and so I came off of it after about 6 weeks. I remained healthy for a while. Yay!
Then…There’s always a “then…”
I started having the worst flare I’ve had in a long time in February 2017. I’m still kind of in it. And it’s July. UGH. GAWD WHY!? Back onto Budesonide I went. Except this time, it didn’t work. I also didn’t have any migraines this time around, and that was great, but it just seemed like the drug wasn’t doing anything at all. We upped my frequency with Entyvio to having infusions every 4 weeks instead of every 8 weeks. Nada. Nothing. No change in response. I was religiously taking all of my other anti-inflammatory medications, immunosuppressors, etc. I followed a strict plant-based for the entire month of April (and I did see about a 20% improvement in my symptoms), but I was understandably getting incredibly antsy. I wanted my life back. I was set to go on a cross-Canada work trip and I did not want to be desperate for a bathroom in the middle of a long flight or when I’d be giving a presentation. So, in late April I did the unthinkable. I went back on Prednisone. I swore I would never go back on that awful drug again, but life in a flare feels like purgatory (and oftentimes, hell).
So, right before my work trip (late April 2017) I started on a moderate dose of prednisone. 20 mgs. I was assured that it was probably not enough to experience too many physical or physiological side effects. Did it help? Ehhhh… enough? A bit? Kind of… Now, to be fair, I started eating animal products again while I was traveling after 35 days of eating entirely vegan. Not my smartest decision and I definitely paid for it. I made it through the work trip with only one incredibly mad-dash to the bathroom in the Toronto airport and a few slightly-less mad dashes all across the rest of the country (incredibly big and grateful shout out to my angel of a colleague Scott who traveled with me and saved me on many occasions by taking care of my luggage while I dealt with these unfortunate scenarios. You are the real MVP).
After two weeks on the road (during which I upped my prednisone to 25 mg) I returned home and immediately cut out meat again. I feel weird calling myself pescatarian (I guess because I never expected I would be) but I haven’t eaten meat since May 14th, 2017. I am still very occasionally eating cheese, eggs, and seafood, but about 90% of my meals are plant-based. I feel really good about this decision and cravings for meat are surprisingly minimal. After a few weeks of being home, I still wasn’t having normal bowel movements, so we upped the prednisone to 30 mgs. I stayed on 30 mgs of Prednisone for about 7 weeks. Within these 7 weeks I finally started feeling normal again. THANK GOD. It’s incredible how quickly a part of my brain accepts that I’ll “never go to the bathroom normally again” and just how incredible it feels to have a normal sh*t. YEAH I SAID IT, Y’ALL. My cheeks have puffed up a bit since having been on 30 mgs of the pred. I can see it. Everyone else tells me they don’t see it, but I do. It’s messed with my brain a fair bit in the past few weeks, but my therapist has been a big help in managing these thoughts and coming up with strategies not to slip down the rabbit hole of struggles past.
So, we’re basically caught up now. I started weaning off of my prednisone 2 and a half weeks ago. I’m down to 20 mgs and will now be weaning at 2.5 mgs per week as opposed to the 5 mgs per week that I started with. I’m still going to the bathroom normally, so knock on wood that that continues. My nurse practitioner is hopeful that maybe the Entyvio is finally kicking in. I don’t know if I believe that, but I’m hopeful. Entyvio is not hurting me, so I’m okay with staying on it until they’re able to have me in for more tests to see if it is working or not. It’s tough. I’m told there are some other biologics that I can try and there’s always something new on the horizon. I’ve come to accept that surgery (an ostomy) could very well be in my future and I’m comforted by so many people having said that their only regret is that they wish they’d done it sooner. My plan is to continue transitioning to a fully plant-based diet in order to ensure that what I eat is anti-inflammatory. For now, I’m grateful for the health I’ve been experiencing over the past 7 weeks thanks to my frenemy prednisone. I’m in the best shape I’ve been in in a long time thanks to finally feeling well enough to work out 5-6 times per week (prednisone can truly make you feel like a beast). I’m savouring these moments because I know that they can slip away so quickly.
Please feel free to ask me any questions at all either in the comments or by messaging me privately through twitter or instagram.