Intentionally Stacking Life with an Invisible Disease

Welcome to the Stacked Intent Blog with Becca Stackhouse-Morson. This blog will feature resources, experiences and much more to help you become authentically you.  I am starting this off with a blog about my Crohn's journey because this week is Crohn's and Colitis Awareness and after ten years, I wrote out how it has shaped some of who I am today sitting here writing today. I can tell you that without some of my Crohn's journey I wouldn’t be the person I am today. It has made me learn to control my schedule, understand my meals, exercise, and know how to take care of me before anything else on my to do list. I am not perfect and occasionally am the reason I have a flare up; however, I took my doctor’s words to heart and haven’t let a disease define who Becca is. My hope in writing this out is that it helps someone who might feel like an invisible disease is controlling their life and to know that it does not have to.

This week is Crohn's and Colitis Awareness ---- I was diagnosed in 2012 with Crohn's after a year of not understanding why I lost 60-plus pounds and almost hit double digits as a senior in high school. It wasn’t for the lack of food I was consuming or from the lack of a healthy lifestyle. It took almost a year and half with lots of procedures, doctors’ appointments, and journaling to figure out the cause of my weight loss and GI problem. The first doctor who diagnosed me wasn’t much help and left me on my own. I found my current doctor who has been with me since 2012 and has helped me navigate Chron’s within the stresses of earning both my bachelors and master’s degrees. Facing stress, I learned how to handle my Crohn's day-to-day. Crohn's isn’t like a broken arm or leg because it isn’t a visible problem that those around you can see. I have had to learn that most people in my life may never know that I have Crohn's – it isn’t something that defines me, but it is something that I live with daily. It is an invisible disease that is treatable but takes discipline to maintain. It isn’t something I have always openly shared and sometimes you might never know. As I have navigated through challenges, the most important aspect of having an invisible disease is to take care of myself. This means that my food preparation is important, my sleep routine is important (this might mean I need a 16-hour Saturday of sleeping), it means that my exercise routine is important, and it means that managing my stress triggers is important.  How have I managed?  My doctor looked at me very early on in figuring out my Crohn's and figuring out my treatment plan and told me, “You can let Crohn's put you in the corner of your life and it controls everything you do, or you can take control of your Crohn's and not let it stop you from living life.” And if you happen to know me well, sometimes I take to the latter part of his statement to the extreme. As the years have passed, I have learned how to navigate sharing the right information of Crohn's with those who need to know or when it is applicable for the moment. My support system has been there every step of the way.

The first Thanksgiving I was diagnosed and learning what the best lifestyle for eat would become, my family ate everything cooked - even broccoli salad that is raw and normally delicious we tried a cooked version which was nasty. Outside my family I have friends along the way who understood or tried their best to understand. God did place my best friend in my life with her own food issues to be able to help us bond over peanut butter and be able to support each other when the waitress looks at you funny as you are ordering a meal, so you do not walk away sick. It is important for someone with an invisible disease to feel like someone in their life understands and it helps when the people you see regularly understand enough so you do not feel uncomfortable. It means that I must know my routine and not vary from it often.

Let me share a little more on the food topic – this may have been one of the hardest aspects of my whole disease because if you know me and my love is in the kitchen experimenting on recipes whether it be baking or cooking. I love to be in the kitchen, but this comes with limitations.  Before we really discovered what was wrong, I had foods like milk, cheese, corn, and juice that made me sick, so with food journals I learned which foods would make me sick and began to avoid those foods. As the years have gone by, I have learned the foods I avoided all the time, the foods I avoided when I might be feeling a little sick and they will send me right down the road of a flare, the foods that will send me into a flare and the foods I avoid when I am in a flare. This is where that invisible plays a huge role because you cannot tell any of those things when I am in a flare or when I am not. This is all on me to monitor and understand those limits and at almost ten years in on this diagnosed disease I have really learned to sit at a table and talk while others eat and I do not. I have learned that it doesn’t matter that the meal has been placed on the table in front of me at the meeting or conference because simply eating those mashed potatoes could make me have trouble functioning for the next two weeks. It has showed me the importance of knowing how to just say “no thank you” moving onward.

Though I have learned that if my love for the kitchen wasn’t there I wouldn’t have possibly known that those mashed potatoes that are fluffy and creamy more than likely have butter and heavy cream in them. Often I do not have to asks questions because I know the process of how food items are made. Why? Because I have grown up under my parents’ feet in the kitchen learning to make meals and cook. Also, I spent three years taking electives for my BIS degree in the Culinary Arts Department the University of North Alabama. I learned the ins and outs of how dishes were constructed. This has countless times helped me pick the right dishes on the menu or be able to create something not on the menu, but from the ingredients on the menu and knowing the location of those items in the kitchen whether it is on the hot line or cold line and can happen or not.

Each person with a GI disease has different food triggers and that is why it is important for you to learn yours and avoid them. Since vegan eating has become a popular choice, it has simplified my life. Though I do eat lean meats, just help with my dairy issues. I have foods I love that I cannot eat without major substitutions crème brulee, that just sounds delicious, but nope it is all cream. I am thankful that fruits are not something I have to be careful with because I am the six-year-old that my family made our stop at the farmers market on our way to the beach and bought a pallet of strawberries for the week but when we got to the hotel an hour down the road half of the strawberries gone and a red streak on the window where the hulls hit was evident. Today this day I am not trusted beside the fruit anymore on trips. There are foods I avoid like corn, popcorn, brussel sprouts, sweet potatoes, dairy, processed foods, and fried foods. But it doesn’t really make a difference once you figure out for your invisible disease what works. But this isn’t much different than you are figuring out the foods that work for your healthy lifestyle. Knowing my eating lifestyle and needs is what helps keep flares away and my Crohn’s healthy. I must be prepared with a snack or meal, and I cannot let myself get hungry because this causes problems.

Traveling hasn’t been limited either. My doctor just might give me extra prescription to have on hand in case I run into a problem. There were times that eating was actually easier like the time I spent in China for three weeks followed by a week in Mexico, before coming back to home.  I honestly have done better out of the United States in eating out than I have here. In China the food was rice, vegetables and meat and that is simple and how I eat a lot. In Peru they had rotisserie chicken everywhere to order at restaurants. In Mexico they had the best street tacos you can find. Travel is difficult because of sitting in the same position for long periods of time and cramping and not knowing when and how bathroom breaks are available. However, that isn’t going to limit me from travel, and it is worth the cost in my book.

I grew up as a swimmer. I was in the pool a lot of mornings by 4:45 AM and had the day going to begin school work. After swimming competitively and year around for 12 years, my sister and I started playing basketball and that became our sport of choice for the duration of our high school years. During high school my sister and I worked out hard on and off the court which created the need to exercise regularly. In college, I played intramural sports, used the gym, but really worked as a lifeguard at the Y to be able to swim and have access to a pool. Any day I’ll take swimming miles over running miles.

Over the last several years, I found it hard to exercise with no access to a pool and not really wanting to go to a gym I found myself not doing much movement once I got off work and needing to find the exercise outlet. This outlet became at home workouts that I would do while Leonidas (my goldendoodle) would play with his toys he wanted to play with his ropes and balls while I was doing my workout – he soon came to bring me the toys as he saw the yoga mat go on the floor. I did this for almost two years consistently. This helped get me into a pattern of a nightly routine to workout. Though in June of 2019 I discovered a new outlet for myself. I went to Vegas with my older brother for him to compete in a Jiu Jitsu tournament. He competed we explored and had a blast, however as we checked out of our hotel room and headed for a 10^th Planet Gym in Vegas – he rolled at an open mat for almost two hours. I helped record videos for his vlog and took pictures. As I sat there in that moment it clicked and I decided this could be fun and why couldn’t I do it. Know the details here is that my brother had been on a Jiu Jitsu mat, in tournaments, gym, in cages, and doing this for over eight years at this point. That wasn’t my first time in a gym or at a tournament to watch him, but in this moment at this point in my life I needed something outside of work. I needed something new to throw myself into and learn. I called my brother about three weeks after our trip and told him I wanted to go to a gym could he help me.

In August of 2019 I walked into my first Jiu Jitsu gym with my older brother to take a trial class. He was my partner the first night and helped me understand the ropes I needed to follow. Yes, he is a big reason I walked into a gym and thought that I could do this for myself. After a week of trials, I signed up and attended two times a week for Jiu Jitsu and once a week for boxing. Within the first 20 classes the first team Jiu Jitsu tournament came up and I called my brother and said I need you to be here on this date and time because I just signed up for a sub-only tournament. No, I did not know exactly what I had gotten myself into, but if you know me this happens often. I competed for the first time in a competition in a long time and it was hard, the first match went the whole round and into the overtime rules – I lost. The second match was against a 13-year-old who had way more knowledge about the rules and the art of Jiu Jitsu than I did. As I grabbed her lapel I could heard my brother say “don’t do that” – why because I left my feet and landed really hard to the ground. Once she got me on the ground and mounted me she progressed to do more things I didn’t know, but now I do. She hit my right side of my stomach and made me almost throw up acid. Yes, this comes with my Crohn's. I tapped quickly and once I was able went to the bathroom and throw up because of that. This showed me I wanted to conquer something new and learn. I have since spent countless hours on the mat for fundamentals Jiu Jitsu, advanced class, no gi, Muay Thai, boxing and open mats. I am learning the knowledge daily from what works best for a 5 foot 1 and ½ inch female with a chronic disease. I learn that yes, I might be able to roll really hard for thirty minutes solid one day, but the next I might have to sit out of rolls because my Crohn's flared up, because of stress, or a meal, or a practice. But I have to learn what it feels like in practice to have a Crohn's flare to be able to handle it in competition or if there was ever a self-defense situation and my right side got hit just right. Learning to communicate that my side is tender and I have to be easy on it for this specific day is the same as communicating that I rolled my ankle, jammed my finger or even hurt a rib. I have progressed on the mat through gaining knowledge, friendships, a husband, and discipline to wake up and get to the gym or walk away from work to get to the gym on time. This has created a place for me to exercise in an individual sport again, that isn’t an individual sport. Why? Because just like swimming you are developing yourself. If you cheat on reps you only hurt yourself, but you are a part of a group environment.

2019 wasn’t an easier year for me I faced challenges that slapped me in the face, but I had to pick up and keep going. The time at the gym helped keep me going. Walking in and seeing faces that smiled or beginning to build friendships with those that you spend time with. Learning who people are beyond the gym and on the mats. Learning how to choke those friends out. Why did this help? Because I had to leave my office at 5:00 PM to be able to make it and take care of Athena and Leonidas before I went to the gym and then walking onto the mat and forgetting everything that happened and everything that is to come the next day. Because you must focus and process and understand the knowledge and information being presented to you. The drilling is a part of getting to the live rolls, which are a part of learning Jiu Jitsu. The learning to live out of the corner with my Crohn's has really come into play here because just like I learned with my lifestyle of eating I have had to find that with the lifestyle of exercise. But the important thing with a disease is that you must learn what your consistent movement needs to look like on my goods days I can go for four hours, but on my bad days 45 minutes might be all my  Crohn's can handle and that is alright. The importance of exercise is to learn that you need to move every single day it is important to exercise to what your body needs. This is important for me with Crohn's, but it is important for everyone. Physical exercise isn’t only good for my physical health, but it is important for my mental health. Because the symptoms of Crohn's are invisible on the outside it can make me feel isolated, sometimes, but this is where the support system that I have built for myself is important.

Crohn's flares can be caused by triggers which is causing an inflammatory response to the GI system. With an IBD disorder like Crohn’s or ulcerative colitis it is important to understand your triggers and your flares. My flares are usually triggered if I eat the wrong thing or have a cross contact with dairy or one of my foods that trigger flares. If I do not get the right exercises in and if I fail to manage my stress, I pay. I can usually tell I am about to head into a flare when my appetite changes or I only want to eat bland, I have major abdominal pain, and/or I am very fatigued. As much as I would love to predicate Crohn's, it is an unpredictable invisible disease. Crohn's is a progressive disease where you can achieve remission and symptoms can change over time which means there can be periods of time where I have little to no symptoms or times where I have flares.  According to my doctor from my recent colonoscopy, I am in remission and looking great so I need to keep doing what I have been doing.  Other things that can cause flare is missing or skipping medication – which means on most days I have to take between 11-14 different pills to help my Crohn's and other disease that are steamed from my Crohn's. I avoid taking over the counter medications like aspirin and ibuprofen because they can cause more harm than good for me. When I get sick and go on any kind of antibiotics, I know this means I will have a flare. I have learned the stress triggers that are emotional and physical can really cause flares. All of this just means I must be mindful.

The biggest fact for me about living with an invisible disease is that the power is me. I must live out of the corner of Crohn's and manage life, so that Crohn's doesn’t manage life.  It means that I remain proactive in my treatment and healthy daily. It is learning the education because just like everything I am not alone or the only person that lives with an inflammatory bowel disease (IBD), such as Crohn's, there are more than 1.6 million Americans. It has been important for me to help myself not feel isolated by educating those around me about Crohn's and the ups and down and helping to understand to be able to support the moments of flares.

This all means that I take control in knowing when I need a weekend to sit on the couch and sleep for 16 plus hours on Saturday and Sunday --- to know I need this sleep to not send myself into a flare. It is knowing how to be in a social situation and not feel like I have to be involved in every aspect. It is having my family, husband, best friend, friends and teammates on the mat know what I need in a flare up. Crohn's doesn’t have to put you into a corner of life if you are controlling your disease instead of your disease trying to control you.

Podcast Addition: 

I spoke with Kyla Holley with Change your Relationship with Food about how Crohn's disease has shaped my relationship with food since I began recognizing my dietary challenges over fifteen years ago. This is one of the first times I've compiled my entire story into a single narrative!