Happy Thursday, everyone! I hope everyone is having a great week. We’re almost to the end! Today I’m sharing something very different and very heartfelt with you guys and I’m just going to dive right in. As you may or may not know, I have Crohn’s Disease. I’m not shy about it but I’m also not defined by it. A few weeks ago, I made mention on Instagram that I had relapsed into another Crohn’s flare after 3 and a half years of remission. I know this is a huge change of pace from an outfit post, but The Savvy Camel is a fashion and lifestyle blog, so I want to share the big things in life with you guys, even if they aren’t always beautiful or picture perfect.
I’ll give you guys a brief background on Crohn’s for anyone who is not familiar. Crohn’s Disease is a chronic, autoimmune inflammatory bowel disease with no cure. The disease can be caused by many different things, mainly genetics and an overactive immune system (I am the latter). The biggest symptoms of Crohn’s are (I’ll spare you the gory details outside of this) frequent diarrhea, blood in the stool, severe abdominal pain and cramping, and excess fatigue. These primary symptoms can lead to other issues like malnourishment, weight loss, and anemia.
I was diagnosed with Crohn’s when I was 16 years old. I was lucky that my diagnosis happened pretty quickly after my Crohn’s switch was flipped. Part of that is because it hit me hard and fast and my symptoms were anything subtle. I was losing a ton of blood, a ton of weight, and could barely carry myself up a flight of stairs without passing out. I went through a series of non-invasive testing but no solid results came of anything. So, I had my first of many colonoscopies just a few short weeks after my symptoms started.
I remember the day I was diagnosed like it was yesterday. I even remember what I was wearing (fitting, right? Ha!). A few days after my colonoscopy, my mom, dad, and I were getting out of the car in the garage right as my mom’s cell phone began to ring. We saw that it was the doctor so we put the phone on speaker and stood in the garage as my doctor told us that I had Crohn’s Disease. You would think this would be a dismal moment, and don’t get me wrong, it was definitely emotional, but in a cathartic way. I remember feeling two things. First: relief that I wasn’t diagnosed with cancer (the word came up during testing). Second: acceptance and readiness to face the challenge. I remember thinking to myself, “okay, so we know what it is. Now let’s fix it.” I understood that it wasn’t that simple, but I was ready to fight this thing! It was a couple of years before I found the right combination of treatment that put me into a full remission. They were tough years, especially as a teenager, but once I found the right regimen, things started looking up.
My remission came right at the time I was heading off for college. Needless to say, I didn’t get to tour too many campuses and I was afraid of going too far away from my parents and doctor. So college got off to a rocky start for me. I wasn’t happy with the school I chose, so I transferred. My new school was about an hour and a half away from home, and I had one of my very best friends in the world there, but there had been this major gap for me in life because of Crohn’s so I became really, really depressed. I felt like I had missed out on my teenage years while at the same time having to grow up and face really heavy stuff at a really young age.
I know this all sounds melodramatic and I really don’t mean for it to, I’m just trying to be fully transparent with you guys. Even in better physical health, Crohn’s still had a grip on me. So I moved back home, went to community college to finish up my gen eds, and started seeing a therapist. Within 6 months I had improved my mental health ten fold and been promoted at my job to an assistant manager at the ripe age of 20. Things shaped up because I was taking control of Crohn’s and not letting it take control of me!
I had a couple of good healthy and happy years before my first relapse. I was building a good resume, spending time with family and friends, decided on my final university destination and was ready to complete my degree, and in an incredibly wonderful relationship (I mean, I ended up marrying the guy, so it was alright). While there’s never a time that you want to have a Crohn’s flare, I was at a good transition point in life. This particular flare kicked my butt, but I kicked its butt right back! This was my worst flare to date because I stopped responding to treatment. All in all, I was out of work and school for FIVE months! Three weeks in the hospital, diagnosed malnourished, 4 blood transfusions, a completely new regimen for treatment, and a long, long recovery. But I achieved remission again, went back to school, traveled to different countries, graduated, and married the love of my life!
Fast forward to now… because I’m sure you guys are ready for me to get on with it. If you don’t know much about how Crohn’s is treated, the most effective way to get out of a flare is with prednisone, which I am currently on. I. Hate. Prednisone. It gives you insomnia, night sweats, mood swings, it makes you outrageously hungry, and it makes you swell up (my cheeks look like chipmunk cheeks!). BUT, on the plus side, I am IN RECOVERY! This flare has been a cakewalk compared to my last one! I’ve only been out of work for a month and I’m going back part time next week! AND I stayed out of the hospital! HOORAY! But I’ll be on prednisone for about two more months, so even when I’m fully in remission and strong again, I’ll still be struggling with prednisone.
Most of my symptoms are completely gone now and I’m just trying to regain my strength. I was in my apartment for the greater majority of the last month but I’ve been venturing out for a few hours at a time over the last couple of weeks to regain my energy and strength! Going to the grocery store has been the highlight of my days lately, haha! You guys see me in my little outfits, but what you don’t know is that I got dressed, took those photos, and went right back to the couch because that’s about all I could handle for the day. But I’m able to do more and more day by day and it’s wonderful!
But the interesting thing about recovery is the emotional aspect of it. I mentioned that I went through a pretty rough depression, and I still struggle with that at times. Times like these brings that to surface—when you’re locked in your apartment for a month and you feel like life is just going on without you. But I learn a little more each time I go through a flare and recovery always seems to make me very introspective. So much of me right now is grateful for how easy this one was for me (comparatively speaking). I’m thankful for a husband who did everything and more than I needed: for taking a week off of work to be at home with me, cooking me healthy meals that fit within the crazy limitations of my diet, taking on even the smallest physical tasks that I couldn’t handle, allowing me to fall in the floor crying when I needed to but knowing when to tell me to get up and fight, and helping me carry this burden. There is not a human more fit for my soul—who knows just how to care for me and just how to love me. I’m thankful for a mother who dropped everything she was doing and drove from North Carolina to Pennsylvania and slept on an air mattress in our living room for 3 whole weeks so that Charlie could go back to work and I would still be taken care of. I’m thankful for family and friends who poured out endless love to encourage and support me through this once again.
I find this disease to be so incredibly humbling. Being able to dry my hair without feeling like I’m going to pass out and being able to take my dog for a walk—little things like these are so incredibly precious to me right now. And of course they’ll become mundane, everyday activities again, I won’t lie. But I’m thankful for the times that I’m reminded to appreciate the beauty in small things. Beautiful things have come from this disease. My family has a tradition of having game nights on Fridays. That all started during my last stay in the hospital and became one of my favorite traditions! My diet is really strict when I’m flaring, so finding recipes that are healthy, tasty, and suitable for me is a challenge. But it’s renewed my joy for cooking!
I owe so much of my outlook on life to my experiences with Crohn’s. Having my health taken from under me on more than one occasion has taught me how precious health is. My body is fragile. Even in remission, I get fatigued and tired far more easily than a healthy person. I catch more colds, I need more sleep, I have a restricted diet, yadeyada. It’s an invisible disease and you don’t see the daily battle, 19 pills, and weekly injections. So I try to treat my body well. I try to move it and allow it to exercise and be as strong as possible. I try to allow it to rest and not run it down. I try to fill it with foods that are good for it.
I’m thankful for the things I have overcome. I’m thankful for the things I have had to overcome. They’re not the friendliest reminders, but I’m thankful to be reminded to enjoy and appreciate even the smallest thing. It’s cheesy, but our lives and our health are a gift and it’s up to us what we do with them. This is how Crohn’s has shaped me. I have tried with all of my might to find the good in it. It’s HARD sometimes, guys. But if I find the beauty in it, then I stay in control and Crohn’s can shape me without defining me.
I hope that this has given you all a little insight into Crohn’s Disease. I’m very passionate about it. Crohn’s is an invisible disease. People can’t see the symptoms or sickness. And moreover, Crohn’s Disease is not commonly known, so it’s important that people learn about it and other IBDs so that we can raise awareness! Please don’t hesitate to ask ANY questions! Despite being long winded (sorry, hehe), I’ve only touched the surface. I am more than happy to share specific details, advice, Crohn’s friendly recipes, encouragement, anything you may need or want! I am where I am because of the amazing community of support that I have and I want to grow that for others! Thanks for reading, everyone. I can’t tell you how much it truly means to me that you took the time to hear my story.