Treating my Crohn's Disease

Friday, August 9, 2019

After having a flare-up of my Crohn's Disease this spring, I waited nearly 3 months to see a new gastroenterologist. Most of the Crohn's symptoms I had been experiencing had diminished. When I finally met with her in June, we talked through my experience, initial diagnosis and symptoms and she recommended a colonoscopy to understand/see everything that was going on - which was what I expected would happen. I was thankfully able to get an appointment for a colonoscopy 2 weeks later, and I hoped that answers would be around the corner.

It had been over 10 years since my first colonoscopy, and it was the prep that I was dreading most. Peglyte had been horrific, and I wasn't looking forward to drinking 4 more litres of that awful liquid. To my surprise, my doctor prescribed something a bit different for prep and there was no jug in sight! My preparation included taking a laxative pill, followed by something called PICO-SALAX (I got the generic version called PURG-ODAN). It was to be mixed with 150 mL of cold water and then followed by clear fluids of your choice. In the morning, you were to drink another 150mL of cold water mixed with the sachet and that was it!

While the prep was still tough (a clear fluid day mixed with a night of clearing out your colon is never going to be delightful) it was so much more manageable than Peglyte. I opted for coconut water, organic broth, and juices for my clear fluids - even having those choices made the experience more pleasant.

Heading into the colonoscopy I told people about the upside. When I had my first colonoscopy, I woke up from the sedation, the nurse asked me if I wanted a glass of juice and then the doctor came in and told me I had Crohn's Disease.

I didn't expect how hard the results would hit me this time around.

strength morgan harper nichols
via Morgan Harper Nichols

If I'm honest, I don't know what I was expecting as I headed into the colonoscopy. I recognized that I had had a flare in the spring, but didn't give too much thought to the notion that things may have gotten worse; When I woke up from the sedation after my colonoscopy, my doctor came in and told me just that.

She described my colon as angry. She had found a section that had been difficult to maneuver around, filled with ulcers, inflammation and scar tissue. (When I visited her office a couple weeks later she showed me photos, alongside photos of a healthy colon - one of these things is not like the other). She told me that she was recommending biologics as a course of treatment, and made me a list of options that she wanted me to research. After hearing this news, I burst into tears. It was all so much to take in, and this definitely wasn't the result that I was anticipating.

I did a lot of wallowing and crying in the days that followed. It was hard to hear that my body was in such a bad place. It was hard to hear that the things I had been doing to help my Crohn's weren't helping enough. It was hard to hear that biologics were the recommended course of treatment. I was angry, sad, and afraid.

Biologics may not be a term that you're familiar with. They're a family of medications that are named so because they are created from biological materials, aka living cells. Some other things in this family include insulin and vaccines. Some of these biologics are specifically created to treat inflammation in patients with IBD. Because of the nature of these drugs, they're administered by injection or infusion, and many doctors anticipate that a person who starts biologics and has success achieving remission, will likely continue to be on them for the rest of their life. My doctor had given me a list of 4 different biologic options, listed some of the pros and cons of each, and asked me to do my own research before coming back to her with a decision in a couple of weeks.

When I was diagnosed with Crohn's in 2008, there were a few biologics being used to treat Inflammatory Bowel Disease (IBD) but usually after trying a few other treatments that were deemed less invasive/extreme. In the research that Paul and I did, I've learned that the approach to using biologics has changed over time. Rather than using biologics as a second or third line of defence after trying other medications and steroids, doctors are now using a "top down" approach, and starting with biologics in moderate to severe cases of Crohn's or Colitis. They do this because of the efficacy of the treatment for those with IBD, and it also means that more patients will have fewer flares in the midst of trying other medications first. Fewer flares = less inflammation in the body, and fewer instances of using steroids to treat.

As someone who has always leaned more to the holistic side, it was tough to accept that a medication that I could potentially be on for the rest of my life was the right decision. Initially I was reluctant to accept this course of treatment as the right thing for me, but after learning and reading more and some big conversations with Paul, I decided that biologics were the best option. It also meant that I was in control of making the right choice for me right now - if left untreated this disease could continue to get worse, and if I had an even more extreme flare, I would have fewer options to treat it and be unable to advocate for anything I wanted to do. Starting this treatment now would mean that we could work towards getting into endoscopic remission (no / little signs of disease in my colon) vs. waiting to see what would happen next.

Of the 4 biologics my doctor recommended, all had been approved for use in Canada since 2013 - which means that they weren't even an option when I was diagnosed in 2008 - so crazy! Two of them were administered through an injection and two were administered through an IV infusion. I did some thinking and soul searching, and realized that I didn't feel comfortable, confident or good about giving myself injections on the regular. So that ruled out two options immediately. I learned more about the other two that were administered through an IV, and in the end I chose a biologic called Entyvio.

Entyvio was approved for use in Canada in 2015. It works by preventing an excess of white blood cells from entering the gut, which helps to decrease inflammation. Of the biologics I was learning about, it was the only one that was specifically targeted to the gut. There's been some studies that have shown its efficacy for people with IBD, and because of its gut-targeted approach, it sounds like fewer people have a negative reaction to it. Entyvio is also the biologic that some people end up on when others don't work. When I went back to my doctor and told her my decision, she reassured me that Entyvio was a safe option to try and reaffirmed my choice.

It's been an intense couple of months - from having a flare, waiting to see a specialist, having a colonoscopy and now starting a new treatment. I feel thankful to have a solid team in place, from a good support network to a gastroenterologist who I trust; She's really taken the time to get to know me as an individual, and offered a lot of reassurance about this course of treatment. I feel much more solid and grounded in my choice to start biologics, and recognize that it's the right approach for me at this time in my journey. It's still all a bit scary - biologics are new and there are a lot of unknowns, but I'm taking it all day by day. I'm hopeful and optimistic that it will help to get me into endoscopic remission, and enable my insides to feel as good as I do on the outside.

Please note that this is only based on my experience and opinions. Always seek the advice of your doctor or other qualified health provider with any questions you may have regarding a medical condition

Crohn's Disease: 10 Years Later

Tuesday, April 23, 2019

It was sometime last year that I thought I would be great to write a post on my journey with Crohn’s Disease, and how different things were 10 years later. After my colonoscopy, diagnosis, and a brief experience with medication, I turned to more holistic methods to manage my Crohn’s in 2008-2009. I changed my diet. I studied nutrition. I worked on my stress. After 2 weeks of cutting out gluten and dairy I wasn’t in pain anymore, and for a really long time, my symptoms were kept at bay and I thrived. When I thought about writing an update post about my journey with IBD and what things were like 10 years later, I didn't imagine that I would be sharing details of new symptoms and stories of seeing a specialist.

The last time I experienced any major Crohn’s symptoms was four years ago. I noticed a reduction in appetite that persisted for a few weeks, so I tried to get an appointment with my gastroenterologist. I wasn’t going to be able to see him for about 6 weeks, and I figured it would sort itself out before that time. Then I got the flu and it was awful. Then my Crohn’s symptoms came out full force while I was dealing with the flu. And to top things off, I got my period. There was basically a flaring rager of a party happening in my body, and I was an unwelcome guest.

The flu passed. My symptoms started to diminish. I made some tweaks in my diet, and started to feel like myself again.

Fast forward to February of this year when I was on a trip to San Francisco. I was there mostly for work, but I also got to spend a few days exploring the city and soaking up the sunshine. I noticed that my appetite wasn’t showing up in its normal ways, which was especially strange since I had access to so many tasty restaurants and treats in a new city. I also had a bit of a sore throat, which I thought may be contributing to my lack of appetite and I had a canker sore or two appear in my mouth. It was all a bit strange, but I didn’t think too much of it since it was the midst of cold and flu season, and maybe my body was just fighting something off. 

When I got back to Toronto, my appetite didn’t return. I had a dentist appointment, and the hygienist mentioned quite a bit of inflammation in my gums.

Lack of appetite.
Canker sores.

It didn’t hit me quickly, but eventually I started to link these things together and came to the realization that my Crohn’s Disease was rearing its ugly head again. I think it took me some time because it wasn’t presenting as more extreme, obvious symptoms (like diarrhea, blood in the stool, urgency before a bowel movement) and I was in a bit of denial that my disease could re-emerge. “I take good care of myself! I eat well! I am resilient!”

I had a big cry and a heart to heart with my partner. Once I realized what I was dealing with, I identified a few more symptoms: unintentional weight loss over the last couple months, lack of energy, and abdominal pain after eating. I vowed to get some blood work done and make an appointment with my GP and specialist so that I could work on getting better. I talked to those close to me about what I was experiencing, and gave myself permission to slow down. I talked to my lead who was super supportive, and encouraged me to take the time I needed to figure things out and put work second. Workouts stopped. Sleep was a priority. I was going to get to the bottom of this.

And then I fainted on the streetcar during my Monday morning commute.

It started off as a normal Monday. I got dressed and made a smoothie, which I packed in my bag. I normally drink my smoothies at my desk, along with some tea or fruit, or anything else that catches my eye from my work’s breakfast catering. I walked 5 minutes to catch the TTC and got on to a pretty packed streetcar. A couple minutes into the ride, I realized I wasn’t feeling great. I was standing by the stairs and knew we were a couple stops away from a lot of people getting off, so I could get myself a seat when they exited. I started to feel hot, so I unzipped my winter jacket and had the instinct to ask someone for help as my vision started to get a bit weird.

Then I woke up on the ground with some strangers trying to help me up. I had fainted.

A couple of very lovely humans helped me off the streetcar, and one woman walked me to safety and sat me down at a bus shelter on Queen St. She went and got me juice, and helped me figure out a plan and some next steps. We were a couple of blocks away from a hospital so I thought it made the most sense to check myself into the ER and see if they could find anything wrong. She walked me there, and I was so thankful for her kindness.

I spent the morning in the ER where they did an ECG to check my heart and did some basic blood work to see how I was doing. They didn’t find anything glaring and encouraged me to connect with my doctors.

I had a neglected requisition for blood work that I filled the next day and made an appointment with my GP. I tried to get an appointment with the gastroenterologist who diagnosed me with Crohn’s Disease and I saw a few times after, but found out that if you haven’t seen a specialist in over a year, you require a new requisition.

My GP and I chatted about my symptoms, the fainting, and my blood work that had come back. It showed that I was pretty anemic again and she wanted to dig a bit more into my iron levels with some more blood work. She also put in a new request for a gastroenterologist referral, and said that any other tests would go through that new doctor. I was pretty excited when I got an email later that day letting me know I had an appointment with a new gastroenterologist, but that feeling faded pretty quickly once I realized the appointment isn’t until June.

It’s been a couple of weeks since all of this happened, and I’ve been doing my best to process it all.

To be honest, at first I was filled with a whole bunch of feelings of guilt and shame that my symptoms had returned; I really thought this was a thing of the past and had put in so much work to feel good. I’ve talked through those feelings, and have reminded myself that this is an autoimmune disease. You can do everything “right” in the world, and your body can still start attacking itself. I’m thankful for Canadian health care, but it was definitely disheartening to realize I’d need to wait nearly 3 months to see a specialist. I also figure they’ll likely book me in for a colonoscopy, and waiting for that could also take some time, which means it could be late summer or even fall before I have a full understanding of what’s going on. I’d be lying if I said I wasn’t scared about what they’ll find - I feel like I’m back at the beginning again, ten years ago before I was diagnosed. Writing all of this down makes me feel very vulnerable, because it's all the scary stuff in my innermost thoughts, and my instinct is to spare you all of that! But it's real and I think it's important to share.

I’ve managed to work on feeling positive amid all of this uncertainty. I started seeing a naturopath to help me in the interim while I’m waiting to see the gastroenterologist. I’ve started an iron supplement that is already helping with my energy levels. While it’s not fully normal yet, my appetite has returned and I’ve been navigating what types of foods make me feel best, and which ones exacerbate my symptoms. I've been eating smaller meals more frequently, and that seems to be helping. I did a new food sensitivity test, and I’m looking forward to getting the results this week. I haven’t started working out regularly again, but I’ve been doing some gentle yoga and meditating which has been a great brain break. I can feel my Type-A tendencies seeping through all of this, along with my desire to control as much as humanly possible with a really, really great plan. I'm working through that too, and trying to be gentle with myself.

While this isn't the Crohn's Disease update I expected to be sharing, I'm ready to navigate whatever comes next, armed with all of the knowledge and experience I've gained over the last ten years. 

That Clean Life

Monday, October 15, 2018

That Clean Life is an awesome meal planner that I have become obsessed with over the last few months. I'm always looking for healthy and easy recipes to try, but sometimes feel overwhelmed by all of the choices that are out there online and have started to get away from using cookbooks. That Clean Life has become a lifesaver to provide super easy and delicious recipes, an awesome meal planner and done-for-you grocery lists.

That Clean Life healthy dinner

There's something that I really enjoy about meal planning - it's probably the Type A in me. And because it's something that I enjoy, I didn't think That Clean Life would be valuable for me. And then I found out about its full capabilities and saw it in action, and realized how well it could fit into my life. It's been a total game changer.

That Clean Life healthy recipes

That Clean Life Capabilities

That Clean Life is more than just a piece of meal planning software or a collection of recipes. Here's why I've fallen in love and use it each week:
  • There are currently more than 800 recipes to choose from and search for, with new, seasonal recipes being added each week
  • You can search by ingredient or category, and each recipe has a beautiful photo + comments from those who have made the dish before
  • Each recipe can be adjusted for the number of serving sizes, big or small
  • Most recipes are gluten and dairy free, with lots of vegetarian, vegan and paleo options
  • All of these recipes can be added into a meal planner for the week, where you can also indicate leftovers
  • That meal plan is turned into a grocery list with the click of a button, and you can indicate which items you already have on hand. You can even email the grocery list to yourself
  • You can add your own recipes into your recipe box, which allows them to be loaded into your meal plan and subsequently included in your grocery list
  • There are also a tonne of done-for-you meal plans that you can choose from, with individual focuses like kid-friendly, paleo or a spring tune-up
  • Recipes can be saved into Collections, which means that you can easily find recipes you've saved to put them into a meal plan in the future
That Clean Life healthy dinner

And have I mentioned that everything is delicious?!

That Clean Life healthy dinner

I love that That Clean Life easily fits into my way of eating, and makes it so easy to prep tasty meals and snacks. Like this layered dip I made for us on a Friday night when I didn't really feel like cooking and wanted to enjoy something a bit more snack-y for dinner.

That Clean Life layered dip

I also love to be a part of the community, as I get to see when new recipes are added and love to creep on the recipes that other members have been making. Each recipe also has a comment section where members share substitutions, questions or comments they have. It's a great way to learn more about other people's experiences with the recipes, and often people's comments have enticed me to try a recipe out if I wasn't sure.

That Clean Life healthy breakfast

That Clean Life has also done an amazing job of creating healthier versions of treats, classics and comfort food - like this chocolate chip cookie pie.

That Clean Life Chocolate Chip Cookie Pie

Each week I get really excited to see the the new recipes that have been added, especially because they seasonal ingredients are enticing and inspiring. I'm so glad that I got over my own idea that this wasn't a service that I would use, because That Clean Life has helped me to discover and enjoy so many amazing recipes. The convenience of the grocery lists has been a game-changer, and we're now in a place where some of the recipes have become absolute favourites in our house. (like this butter chicken!) That Clean Life has taken my enjoyment of meal planning to a new level, and it's become integral in the way I make food each week.

Wanna give That Clean Life a go? You can try a demo membership for free, play around with the meal planner and try out 25 recipes to start.

That Clean Life meal planning review

This post contains affiliate links, which means I'll make a commission if you click a link and purchase something I've recommended, at no extra cost to you.

Making Space

Wednesday, September 5, 2018

Ashley Gibson photo by Ian Brown

And just like that summer is behind us, and we're heading into the fall. It feels like yesterday that it was the end of May and I had some time off before starting a new job and embarking on a new part of this journey. Time certainly does fly.

There are a bunch of things that I'm excited to write about that happened this summer - finishing my latest fitness program, travelling to Indianapolis and Montreal, and finding my groove in Toronto's east end once again. But first I want to talk about something a bit more meta, and the thing that's enabling me to write this post at all: making space.

I've had some big changes in the last couple of years, and this summer brought on its own unique transition. Within less than a month, I started a brand new job with a new company and then moved in with my partner. Getting that job offer was very exciting, but it also put a lot of other things into motion - giving notice and leaving my previous job, as well as giving notice at my apartment. Suddenly I went from lots of comfort and familiarity to a whole lot of transition and change.

And that transition felt like it lasted the whole summer! Every time I looked at the calendar I felt like there was something else coming up, whilst still gaining my footing in the day-to-day of my new job. I am so grateful for everything that was thrown my way, but it felt chaotic and tiring at times, and didn't leave me much space to find my new normal.

And now we're here.

Post Labour Day with those back to school feelings that leave me yearning for new school supplies and a fresh day planner. I finally feel like I've caught up with all of the changes and can just enjoy this new chapter of life that I've decided upon.

I can breathe.
I can enjoy this place.
I can take space for the things that bring me joy.
And be intentional with how I fill the space.

I've been doing some of these things naturally (prioritizing time for lovely friends, trying new recipes, practicing good self care) and others need to be a concerted effort, like practicing piano, reading for pleasure, and writing more regularly.

When I was working in my old job that so was so heavily connected to social media, writing and blogs, I didn't feel excited to come home and write. I was also focused on doing all sorts of social media activities related to coaching, and that always left "write new blog post" at the very bottom of my to do list. I've been using this blog as my online home for 10 years now, and over the years my posts have continued to dwindle in numbers. I've talked about changing that multiple times, but in this moment I see where writing fits in to my life and I'm determined to make it a priority.

So, hi.

The goal is for this post to be the first of more regular posts. I've made a list of things I'd like to write about and would love to hear from you what you'd like to see here. Fitness, health, lifestyle, travel, who knows what else - if there's something you'd like to read from me, let me know in the comments.

Morgan Harper Nichols

Photo by Ian Brown, Make up by Megan Fraser
Quote & image by Morgan Harper Nichols (I've been pinning so many of her quotes of late because they all resonate so deeply)

To Frances Spade (from someone else who lost her mom to suicide at 13)

Friday, June 8, 2018

Dear Frances,

I've been thinking a lot about you over the last couple of days. I want to start off by saying that I'm so sorry for your loss. Losing a parent is incredibly difficult at any age, but 13 is even more tough. Not only am I sorry for the loss of your mom, but I'm so sorry that you will be going through this in the public eye, with a lot of people sharing their thoughts and opinions about your mom, her death, stigmas about mental health, and the fact that it was a suicide.

I too lost my mom to suicide when I was 13. It was in 1998 before the internet was popular, yet even still, news of my mom's death and the "mysterious" circumstances spread like wild fire. People said that I was lying. My peers speculated on the way that she died. There were rumours, lies, and a whole lot of opinions that I could have done without - and my mom was just an everyday person, not even a public figure.

Over the last 20 years I've grappled with many emotions, feelings and waves of grief. It isn't my nature to be angry, but if that's what you're feeling, it's ok. Your feelings are valid, whatever they are. A friend once shared with me that grief is like the seasons - ever present, but always changing. Over time you will run the gamut of emotions, you may have already felt like you've gone through too many to name this week.

I was very lucky to have an incredibly guidance counsellor and a very compassionate homeroom teacher when my mom died. And that guidance counsellor set me up with my high school guidance counsellor, who helped me to participate in a bereavement group in my high school. I found a great therapist 2 years ago and she's been instrumental in my continued journey. I am so grateful for those resources and support. I urge you to find that support for yourself, or talk to someone who can help you do so; It will be invaluable for the future.

With each passing day, this will now be the lens with which you view the world. Your friends' and peers' problems will likely feel small and challenging to empathize with for awhile. It isn't common for teens your age to lose a parent, especially not in this way. They may be dealing with moving out of their childhood home, getting a low grade on a test, or having a disagreement with another friend - it is okay to show compassion, set boundaries, and remove yourself from the situation if needed. Managing your own self care and self preservation in those moments is key.

As you meet people in your life who have gone through something similar, don't be afraid to be vulnerable and talk to them about your shared experiences. I have found that I have become deeply connected to those who have experienced trauma, grief, loss and the suicide of a loved one. I cherish those relationships deeply, and know that they have helped me in my own process over time.

Don't read the comments on the internet. While always a good practice, when it comes to these matters I would advise you to be even more stringent. People can be insensitive, cruel and downright nasty. You may feel attacked personally by their words and insensitivity. Save your energy and potential rage.

As the years go by, continue to take care of your own mental health and practice good self care. There will be days that will be hard - some will be predictable (like mother's day, her birthday, the loss of others, special days in your life) and others will be sneaky and catch you by surprise. Lean on your supporters, ask for help from your network and remind yourself that it's ok to not be ok.

Your mom brought joy to many people - not only with her brand, but to you, your family and those who knew her closely; her death does not take that away. Talk about your mom. Say her name. Print photos. Ask people who knew her to tell you stories about her. Repeat your favourite stories about her. When you meet new people, share her story. They won't be able to meet her, but her legacy will continue to live in you.

These are all the things I wish I could go back and tell myself. Twenty years later I am impacted deeply by my mother's life and her death, and I still miss her every day.

Kate Spade was an incredible woman who loved you very much. I am thinking of you through these challenging days, and hope that little by little, things will seem a bit brighter. Take care of yourself.


Photo by Matthew Henry

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