My Journey With Crohn’s Disease + Next Steps…

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I’ve been wanting to write this post for so long now but always hesitated to write a post like this because it’s pretty much as personal as you can get. But lately as I’ve opened up on my Instagram Stories about my health issues, I’ve received so many messages from you saying you were either battling the same disease or similar battles and we were able to relate. So if by me writing this post that could help or make one person not feel so alone, then it’s totally worth it.

Let’s start from the beginning, because I remember the day like it was yesterday. It was a Friday (Jan 25, 2013 to be exact) and I was sitting on my bed when I got the call from my doctor saying I had Crohn’s disease. I honestly at the time had no idea what it meant or what it was. I did a quick Google search and learned a bit about it, still not knowing the rough road I had ahead. I thought to myself ‘Oh I’ll just take some medicine and I’ll be better in a few weeks.’ That was far from it unfortunately. Let’s back up and talk about what I was experiencing many weeks prior to my diagnosis. I had severe abdominal pain- pain to the point where  I wish I could say I was being dramatic but it was the worst pain I’ve ever had in my life- as if someone kept repeatedly stabbing me in the belly button. I had a few moments where the pain was so great, I thought I was going to die. But that’s the only symptom I had (and still have which I’ll get to later) which is why I was hard to diagnose because I didn’t have all the classic symptoms. They had to run so many other tests before they could find what’s wrong. For those who don’t know what Crohn’s disease is, it’s an autoimmune disease where your body/immune system essentially attacks your digestive tract and causes inflammation in your intestine. Mine is is my small intestine particularly in the ileum. There is no cure but you can achieve a state(s) of remission.

So once I was diagnosed, I was prescribed a medication called Pentasa which is a Level 1 medication. There are essentially 3 levels of medicine and we started with a more mild medication to see if my body could respond to that. After a few weeks with no relief, we started trying other medications, steroids, biologics, immunosuppressants, and I have not seen much improvement. I want to add that no two days are alike when you are sick, you can look perfectly fine one minute and feel extremely sick the next. There is no predicting when you are going to have an episode of pain which makes things hard when you want to plan you life out!! I’ve had to cancel plans with friends, miss school and work, even vacations and a Taylor Swift concert- I’ve missed out on a lot because of  my disease. It can be really hard day between the pain, between missing out on things, and not being able to eat your favorite foods. Yes, I’ve had to give up some of my faves: salads, burgers, popcorn to name just a few. Not to mention, some days it’s hard to just get out of bed. You feel mentally and physically drained sometimes and it could be really frustrating seeing everyone else live their life. Now I am thankful that this is not every day but I would say over the last 5 years since being diagnosed, I’ve struggled with my disease 75% of the 5 years.

So now we come to the last month of what’s been going on in my life as far as my Crohn’s. I’ve given a glimpse of what has been happening over on Stories as I mentioned earlier but I wanted to talk more about it since a major change is happening pretty soon. The past month in terms of my Crohn’s has been the worst my disease has ever been. I am in a severe flare up. I slowly saw myself getting worse around Christmas time but really noticed things to a turn for the worse about 3 weeks ago. I could barely eat solid food. The pain was so excruciating in my belly button after I would eat the foods I normally was able to eat and felt like something was stuck and couldn’t pass through the area where my Crohn’s is. So my doctor put me on high doses of steroids for some time and they were not helping at all. It came to the point where I could only eat liquid foods, soup was pushing it but ate some anyways because my body started to become extremely weak. I started to lose weight and knew something was really wrong. My doctor admitted me for IV steroids and the testing showed my Crohn’s was the worst it’s ever been with areas of severe inflammation. I am to the point where I’ve tried almost every medication and my body just will not respond to those medications so now I am left with surgery. I cannot believe I am saying this but when this post goes up, my surgery is tomorrow.  I will be having a bowel resection to remove the inflamed area. I am really scared to be honest and I know the recovery will be brutal. I am hoping however, this will be a fresh start for me. A chance to finally live my life. I don’t want my disease to rule my life any longer and I am just ready to be the old energized, pain free, me.

So that’s my Crohn’s disease story. I wish I could tell a happy ending or some advice. But if I can tell anyone with whether it be crohn’s disease or a chronic illness is you are not alone. Not everyone is going to understand you but that’s okay. Know that it’s okay to take it easy when your body is telling you to and hang in there. Better days are ahead and stay as positive as you can. Believe me, I know it can really be hard to stay positive but try to find something small in each day to be thankful for. I always try to have the mindset that my floor is somebody’s ceiling.

Here is a playlist of my five favorite songs to listen to when I need to feel uplifted when I am going through a rough patch…

One: Wolves by Selena Gomez

Two: Come Alive by Lauren Daigle

Three: This Is Me from the Greatest Showman

Four: I Won’t Let You Go by Switchfoot

Five: Helium by Sia

I am here for anyone who feels alone or wants to chat more about crohn’s or has any questions- feel free to leave a comment, message me on Instagram, or email me. Love you all and thanks for reading if you got this far.

Be well,

Carin