I’ve been meaning to write this post for months, even well before I began experiencing symptoms from a recent flare-up. As some of you may know, I was diagnosed with Crohn’s Disease just over two years ago. Before my diagnosis, I experienced symptoms for two additional years before doctors figured out what I had.
While social media may depict a busy work and travel lifestyle, there’s so much more that goes on behind the scenes in my life. In the past six months, I’ve made the decision to focus more on my health and how I manage my disease. I’ve also chosen to shift my online presence. Travel and photography have always been my top two passions in life. But as I get older and experience health challenges, I’ve realized that all I want is to wake up feeling good each day. And when that feeling is taken from you for years on end, you realize that no amazing destination can make up for the feeling of not feeling healthy or well.
I won’t ever stop talking about travel; it is a core part of who I am. But I plan to expand what I write about online. My renewed focus on health has been so eyeopening and challenging at times that I feel there may be someone out there who takes an interest. Even if it’s just a few people, it’s still worth writing about.
How It All Happened
Back in the fall, I knew I was approaching the two-year mark of my diagnosis. I had been experiencing some symptoms from Crohn’s, and while not severe, they were still noticeable to me, and I knew winter was coming so I wanted to make sure I was staying on top of my health.
In the four years of dealing with Crohn’s symptoms, I had noticed that with each passing year winter was tough for me. Last winter was especially hard, and I realized that my symptoms were worse in winter than summer. I also dealt with seasonal depression and our inversions in Salt Lake were just making it harder and harder since we would have gray skies for weeks on end with no sun in sight.
I asked my GI doctor to check up on things in November. For Crohn’s suffers, that means a colonoscopy. I’ve been advised by my current GI that I need one every few years, but with recent developments, I’m convinced annual is the way to go. Even though they can be perceived as a tough procedure (mainly the prep) it’s the best way to get insight into the management of Crohn’s.
We did the procedure in early December and he found signs that Crohn’s was still active. I wasn’t entirely surprised, I had been on a biologic drug called Cimzia for 1.5 years (with a short break in between) and it didn’t seem to be working as well as it did when I first started taking it. That was the first sign that my Crohn’s was still active. Even though I knew symptoms were present, they weren’t so intense that they impacted my life severely, but I knew I needed to do something about them. At the end of the procedure, he recommended we switch to Humira.
Of course, we immediately had questions. Why Humira? How is it different? If it’s such a similar drug, will it be effective? The questions went on and on. But we didn’t have much time to ask him because the post-op discussion after a colonoscopy is a mere five-minute chat. I was put on a one-month dose of Prednisone and advised to follow up in one month.
One month quickly went by, and during this time I started exploring all sorts of GI management options. I always considered myself a healthier person, however, I didn’t stick to a really strict diet. I excluded spicy foods, fried foods, coffee, and dairy among other things quite often, but I wasn’t strict about my consumptions. I still had espresso on occasion, I still had a social drink here and there. And at the time I began to realize if I wanted to even consider managing this disease in the best way possible, I needed to adhere to a much stricter diet.
In Mid-December, I cut out coffee. As someone who had always been an occasional espresso drinker (and never a morning coffee addict), it wasn’t a difficult as it sounded like it was going to be. In fact it was easy to cut out things knowing that during this time of switching medications, I was more susceptible to dealing with symptoms and I wanted to do everything I could to minimize the impact on my health.
We spent the holidays in St. Louis and Los Angeles, so during that time I was fairly easy going on my diet knowing that it was going to be hard to adhere to a strict, new regiment during the holiday season. I was conscious but I wasn’t super critical. I was mindful, but I wasn’t unrealistic. New Year’s Eve hit and I had the last sip of alcohol I knew I’d have for the foreseeable future, and it’s true, I started a strict health regiment and I’ve stuck to it.
I didn’t hear much from my GI doctor in January; in fact, I didn’t hear from them at all. I had received approval from my insurance in late December about covering Humira, and from there it was supposed to be a simple process to start the drug, but for some reason, I wasn’t contacted about next steps from my GI or Humira. During this time I started seeing my nutritionist in Arizona more frequently. She was helping me with a strict nutrition regiment which was accompanied by vitamins to ensure I was staying as healthy as possible while off the medicine. Her goal would be to keep me off medication permanently, but as you’ll see later on, I learn this isn’t quite an option for me.
Arizona became our winter escape. Our frequency of trips increased as the year started. I first visited my nutritionist in December after a few years of not seeing her. She’s an amazing 95 year old (can you believe it?) woman who’s been studying nutrition, the body, massage therapy, and overall health for over 65 years. I trust her like family, and she’s always been so helpful, so naturally when I decided I needed to be stricter about my diet I turned to her.
Winter started hitting harder and with the difficulties is posed on my disease I started booking more and more trips to Arizona, mainly to get away from the cold, but also to see Elaine so she could help me manage my health regardless of medication or not. I’ve learned that medicine is important but nutrition is truly the most important piece to managing Crohn’s. Food is medicine. Everything you put in your body can either help you or hurt you. When you have a digestive disease everything you take in is key to managing gut health. Don’t ever let anyone tell you otherwise. There are in fact GI’s who don’t think it matters much and that the only choice is medicine. Of course, medicine is important, but so is food!!
I visited Elaine/Arizona once in January, and twice in February. Towards the end of January, I started feeling symptoms that were typical of a flare-up. Before being diagnosed I experienced four flare-ups in 2015, a couple in 2016, and then I was diagnosed in early 2017. In 2017 I experienced one flare-up, and in 2018, I think I only experienced another one. Since my diagnosis, my disease was in much more control than before, and that was mostly in part to medication, awareness, and food. As I mentioned, for the better part of these years I wasn’t super strict about my diet, but I was very conscious about it.
As the flare-up started becoming more and more intense in February, I began to get worried. It was the toughest flare-up I had ever dealt with. It was impacting my ability to do anything daily. I ended up canceling a trip to San Francisco and one additional trip to Scottsdale. For those who know my love for travel, you understand that this isn’t normal for me. But I put my health first because, without health, travel is challenging. I finally had that one-month follow up for my procedure; however, at this point, it was almost two and a half months later. The delay in starting another biologic was a big part of why the flare-up occurred.
I won’t get into the details of the time delay and the intensity of the flare-up. But it’s been a truly scary month. I am so happy February is over. I realized the stress of evaluating my medical options to manage my Crohn’s (and the differing opinions that came along with it) were causing me additional stress, and that stress was, in turn, making me sicker. I started another course of Prednisone, and I have a nurse coming to my house on Tuesday to show me how to administer the Humira shots. I’m looking forward to (hopefully) feeling some relief. I had success on Cimzia and the only reason it became less effective was