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

1 comment:

Aunty Sharon said...

Was so sorry to hear that even though you tried everything in your power to keep your disease in check that you were faced with a bad flare up after 10 years.
I know how scary this was but also know you and how strong you are and when I first heard your news I KNEW you would after a few days of letting it all sink in, acknowledge your feelings, and you'd jump on the bandwagon and do your research to decide what was the best fit for you.
I'm glad you found a good fit that you feel comfortable with and with Pauls support as well as all the people who love you the bioligics will be a good fit to have you feeling healthy and symptom free.
Love you for your tenacity and strength in whatever you face. You continue to inspire me . ❤

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