Exactly 20 years ago today, the course of my life was forever changed when I was diagnosed with Crohn’s Disease. Life is made up of moments that are strung together, some of which may be easily forgotten, and some unforgettable. Here is a single moment on May 23, 1997 that I’ll never forget.
A few days prior to May 23rd, I overheard my mom talking on the phone with my doctor, when I heard the word “Crohn’s” for the very first time. I knew that I was sick, and I wanted to know more, so I first searched my encyclopedia for answers (remember those days?!). It led me nowhere, so I then went to the Internet, hoping to find out what this word could possibly mean.
This was back in the dialup AOL days, when whatever you typed in was exactly what you got, and the computer didn’t seem to make sense of it for you, like it does today. I typed in “Krones” and that’s basically where the hunting for answers stopped, cause I got nowhere real fast
A few days later I was back at the doctors with both of my parents. The entire day was a blur, except for this one single memory. I was sitting in the pharmacy and handed the first of many medications that would change my life. I looked at the bottle that was given to me, which was dated May 23, 1997. When I close my eyes, it feels like this happened just yesterday. It’s one of those memories forever etched in my mind.
I went from being your average, happy 12 year old, to losing 30 lbs. in a month, in nearly constant pain, while taking 96 pills a week. My Crohn’s was aggressive and difficult to manage, so a few weeks later I was admitted to the hospital for the first time, and I was taken completely off of all food for over 2 weeks. This was my new “normal,” and at the same time, something that I couldn’t possibly comprehend.
One of the medications that I was on came with the lovely side effect of puffy cheeks, which drastically changed how I looked. In August 1997, I went back to my middle school to check in before the start of the school year, and I learned that all of my friends were heading to the beach, and I was the only one that wasn’t invited.
This is another moment that changed me. The moment that I believed that no one wanted a sick friend.
From that day on, I did my very best to hide my Crohn’s Disease. I became a master of disguise. I learned to smile through my worst pain, so that no one knew that I was secretly suffering inside.
By the time I got to my sophomore year of high school, very few people remembered that I even had a disease. I was on a new medication that worked well and came with fewer side effects (at the time), and I was in complete remission at that moment. All I wanted was to fit in, and I finally felt like I did once again.
Fast forward to now, and I’m anything but normal…but…that’s what I love the most about myself! There’s no one else exactly like me in this world, and to me, that’s magical.
Over the past 20 years with Crohn’s, I’ve learned so many lessons, and many of them I’ve learned the hard way. It’s always my goal that by sharing my lessons with you, it will make your journey easier.
Sometimes I wish you could see where I actually started with my health & disease, because if you saw me then, you would understand why I believe that you’re capable of absolutely anything that you set your mind to.
There truly are no limits, but first, you have to believe.
Crohn’s Disease & The Lessons That I’ve Learned:
Challenges Are a Part of Life
It took me a LONG time to realize this, and although challenging times aren’t easy, recognizing that challenges are simply a part of life make them easier to accept. Challenges come and go, like seasons, and they don’t have to permanent.
As with most of us, I’ve faced challenges in literally every area of my life, and when they come up, I hang on tight, push forward, and look towards the good times that are sure to come, because rainbows always follow the storms. Always.
Change is Inevitable
As many others do, I grew up with a set plan for my life. I would have a career as a fashion designer, eventually owning my own company. I would be married at 26 and would have 2 kids by the time I was 30. Life would be perfect. This is how it works, right?
In all reality, my life has turned out drastically different, and yet it couldn’t be any more beautiful because of it. I used to fight change, but now I’ve learned to embrace it. Just like facing the challenging times, the more I accept that change is a part of life, the easier it becomes.
I’ve learned that when life feels like it’s crumbling all around you, it’s really just creating the space for the magical life that is to come.
There is Always a Choice
Life can feel painful at times, but I believe that we each get a choice in how we see and respond to it. We can choose to learn the lessons from these hard times and let life build us up into who we are meant to be, or we can choose to let it destroy us. The choice is always up to you.
Many circumstances in life will be out of your control. I couldn’t control being diagnosed with Crohn’s Disease, but I can control how I choose to see and respond to it. This has made all the difference.
I could have easily let this disease destroy me. I could have become angry and bitter, asking “why me?” Self-pity is not the way that I choose to live my life, so I learned to let go of what I cannot control, and look for the good, even when it feels like it’s incredibly hard to find.
It’s because I choose to see this disease as a gift, that it becomes exactly that.
Forgiveness is ALWAYS For You
I’ve written about this topic before, and how forgiveness played such a huge role within my healing.
I believe that holding onto grudges can make us sick, because I know it did for me.
I’ve been hurt by friends and family many times throughout my life, because I had expectations of what they SHOULD be. They didn’t meet my expectations, therefore I felt let down, and perceived what felt like they didn’t care.
I held onto these grudges for far too long, until one day I had enough, and finally came to the realization that my anger was only hurting me.
So I let all of the resentment go. I looked for the good in the situation, and I moved on.
While the change happened the moment that I decided I was done, it was a process to fully move forward. I realized that my friends and family that I felt “hurt me,” actually gave me the best gift they could have given. Besides my husband and a few friends, I had no one else to pick me up when I fell, so I had to learn to pick myself up, on my own.
If they were there for me in the way that I thought that I needed them to be, I wouldn’t be the incredibly strong woman that I am today. That’s the truth.
Letting go and forgiving has been a huge piece of the puzzle, to healing my entire life.
Being fearless doesn’t mean that you won’t experience fear, because we ALL do. Rather, it implies to become aware of & recognize your fears, but to move past them anyway.
I’ve faced so much fear throughout my life, and I’ve taken risks that I didn’t know how things would turn out.
One of the biggest fears that I’ve ever faced was during my last surgery, when I had over 6 feet of intestine removed. Before the surgery, I was terrified of making the wrong decision, even though I had no other real option, but something deep inside pushed me forward.
When you find yourself afraid of something, think back to when you faced another challenge that was even more fearful. Remind yourself of how you made it through that time. This can help put fear into perspective and give you that extra push to move forward.
It’s because I took big risks and pushed past my fears that I am where I am today. If I had stayed comfortable, I wouldn’t have had this opportunity to write this post for you!
“If I’m Going To Be Free, I’ve Gotta Be Me”
I first heard this quote from Bob Proctor and it resonated deeply with me. I spent so much of my life trying to fit in, and trying to be what I thought everyone else wanted me to be, until I realized that being my unique self is the key to my happiness.
The outside world will try to tell you who you should be, what you should act like, and what you should dress like. But.. What is TRULY amazing about this world is that there is no one else exactly like YOU.
I wrote in my self-confidence post the importance of knowing who you truly are, because that can never be taken away from you. What are your qualities that you’re most proud of? For me, I know without a doubt that I am loving, kind, generous, mentally strong and incredibly resilient. Who you truly are is not your physical appearance, your job, being a parent, friend…or anything else that exists outside of yourself.
I’ve learned that I can’t live my life for anyone else. It may not always feel easy, but being yourself is where I believe that true happiness and success come from.
Knowing and being exactly who you are can set you free. If anyone is going to judge you for that, they aren’t worth a moment of your time. Life is a journey. I’m still learning more and more about myself every single day, but today I’m very proud of the woman that I have become.
Crohn’s Disease once felt like my enemy, but it has now become my greatest gift. I have learned to turn my pain & suffering into lessons that I can share with all of you!
And THAT my friends, is the REAL reason why I’m here.
Thank you so very much for sharing this amazingly personal story! im ever so grateful to have had you come across our path! (Even in the simplest of ways!) I don’t always comment… sometimes you just get a big “❤” on Instagram – but please know you have encouraged our family many times over!! There are some folks on the east coast thinking of you often and keeping you in prayer! Thanks again for the transparency…❤
* Philippians 4:7-9 (from the Bible) are our family’s “reminder verses” to keep our hearts and minds fixed on the good & lovely when all else seems otherwise. Chronic illness is a part of our family’s daily life and we have met many challenges as well… The surgeries, Drs apts, whatching my kids hurt… it’s been once lesson after another – but I’m so appreciative for them all!! So grateful for God’s grace!! It’s wonderful to see and hear of your successes and again be reminded of the victory that is before us when we do not give up! Our health conditions are very different by our hope is the greatest gift we share!!
Many continued blessings to you and yours!! Have a lovely day & keep going forward!!
Sending you so much love, thank you Mikki! <3
Thank you so much for sharing your story.
Thank you so much for sharing….I too have had crohns for the last 20 year’s. Nice to hear someone else’s story! 😀
Kirsty Bell says
Thank you so much for sharing your story. I was diagnosed 1 month ago and finding a positive article on crohns has helped so much.
So much love to you, Kirsty!
Thank you very much for sharing your story, I was also diagnosed with Crohn’s disease 19 years ago and has had to faced many challenges in life very similar to your story. I can write a book about my life and living with Crohn’s. I had a collectomy when I was 25 and it was the most most painful experience staying in the hospital for 25 days. I can’t believe how I survived this challenge but thanks to Allah who is my greater he helped me make it through. And all the support from my sisters and family, friends was a plus. Now I’m 43 years old and enjoying the life with my three daughters and a loving husband is a different challenge. I really loved reading your story and hope everything goes well for everyone with Crohn’s. Stay strong and be positive if I survived my first year with Crohn’s anyone can survive thing challenge.
Thank you so much for sharing, Hoada!
Thank you so much for sharing your story…im 24 and I was diagnosed with crohns 3 months ago…bowel perforated and formed a fistula..had an ileocolectomy but currently still experiencing side effects of the surgery (d and exhaustion) finding it difficult to keep up at work…went in for a follow up colonoscopy and was told that my bowel has ulcers…and in need of azathioprine immediately…really want to know if theres anything else besides immunosuppressive treatment that can put me into remission…currently really depressed…had been planning to tie the knot this year but I feel hopeless now…
Hi Nora, I would recommend checking out the posts on my “Learn From Me” page to see what resonates with you. This is where I’ve written a ton about my journey – https://livinglovingpaleo.com/learn-from-me/
Reagan kalp says
What medication were you put on that worked the most for you? I know everyone is different, but my boyfriend has it and he’s tried almost everything and giving up hope. Im really desperate for tips and tricks and things that helped you!! Please help! Email: email@example.com
Hi Reagan! I’m not legally allowed to say which meds worked best, as you’re right, we’re all SO different, and just because something worked for me or didn’t, doesn’t mean that it’ll be the same for someone else. The best thing that you can do is to search the posts that I’ve written here, which are all about my journey and what got me to where I am today – https://livinglovingpaleo.com/learn-from-me/
You may want to consider looking into functional medicine as well, it was a game changer for me. Sending you love!
Wow! your story is incredible and inspiring.. I am glad you are doing well. Your post on self-confidence sounds like me many years ago. I have finally ‘found myself’. Also, your post on forgiveness is a must for all to practice. Thank you for sharing your life having Chron’s as it looks like you have helped many others going the the same thing or just tough medical issues. Your are in inspiration!
I don’t usually comment. But after reading your story, I’m left in tears. Tears of happiness that I’m not the “only one” going through this. I’m so grateful that I came across your story. Ever since I was 12, doctors were stumped and diagnosed my stomach aches as just “stress”. Stress of being young? Fast forward 12 years later and I was recently in the emergency room and was diagnosed with Crohn’s Disease. My stomach dropped and I felt like I couldn’t breath. But after reading your story I see a light at the end and a way out. I see a whole knew perspective. I thank you for that.
You are amazing, Chloe! Thank you so much for sharing a piece of your journey. You’ve got this!
Wanda Damico says
Thank you for sharing. My daughter forward me your story. It was very touching and definitely encouraging. My daughter was just diagnosed Aug. 2018 one month prior to her 18th birthday. It has been very difficult for her. For her to forward this to me must have meant something to her. She is at that stage of depressed and not knowing what to do. I believe your story was the beginning of acceptance to this disease. As I’m typing this she decided to leave her room and take a walk. Good Luck and God Bless you!
Thank you so much for sharing your inspiring story. I too suffer from Crohn’s. I’m 18 years old, and was diagnosed when I was 3. I’m allergic to Remicade, the biologic that put me into anaphylaxis and almost killed me. I’ve gone through many struggles through the years, been in the hospital for days on end, and switched medications so many times. This last time, April-September was a tough flare for me and I had to do what was best for me. I quit my job, and stayed home most of the summer. I came closer to getting on another biologic than ever before. B I knew what it meant and I stuck it out. My doctor of 14 years all of a sudden wasn’t the same doctor that knew. My doctor knew that she was going on vacation soon and that my scope might interfere with the beginning of her vacation. She refused to scope me when I was in desperate need and wrongly diagnosed me with C Diff so that she would be exempt. I was on heavy antibiotics for 4 days before stopping, coming to the realization that I exhibited no symptoms of C Diff whatsoever. She had hit me with such bullshit. I found myself a new doctor, an adult doctor in exchange for my pediatric doctor that had my best interest at heart for the last 14 years, or so I thought. I was still 17 but this new doctor took me, scoped me, and got me the meds I needed. Now I’m in remission, and couldn’t be happier! I thank you so much for sharing your story and lessons you’ve learned and use it as inspiration for positive and optimistic thoughts!