This Is The Ugly Truth Of Crohn’s And Ulcerative Colitis, And Why It Remains So Misunderstood

“Oh, I have IBS too, I totally get it.”

A friend uttered those words to me as I sat with a swollen stomach, pinched against the buttons on my jeans and feeling too ill to eat the food I was surrounded by.

As I sat and watched my friends and family laugh, enjoy delicious foods, and talk about the upcoming big game, I felt like I was standing in the middle of a crowd, screaming at the top of my lungs, yet no one could hear me. I was incredibly offended, at first, when people felt they could relate to me and my condition because they experienced gut issues such as food sensitivities or IBS, but then I realized they did not know the difference between IBS and IBD. It was at that moment I felt how passionate I was about what I was going through and I knew I wanted to learn more about how I could educate myself and others.

It was August of 2018 when I started experiencing awful gut issues. I was in severe pain, vomiting, and spent hours in the bathroom. After a year of tests, we concluded it was my gallbladder. What I did not know was if you have issues with your gallbladder, there is usually an underlying cause. Finally, in July of 2019, after losing 35 lbs. and living in extreme pain for months, my doctors decided to take my gallbladder out. I was looking forward to getting my life back. Well, little did I know, my journey was only just beginning.

It was about a week after my surgery when I noticed by stomach looked distended and I started throwing up again. This would be my life, on and off, for the next year. I spent the entirety of 2019 researching how to heal my gut and learned what caused my health to get to this point. I made extreme lifestyle changes. I was juicing celery on an empty stomach, cutting out gluten and dairy, exercising… but something was still off.

I was feeling better everywhere but something was absolutely wrong with my gut.

I wanted answers. I was seeing a gastro and they were trying different medications but did not think I had Crohn’s Disease since I didn’t have typical symptoms of a Crohn’s patient. By September 2020, after vomiting for 9 hours straight, my husband rushed me to the hospital. We were told I needed immediate surgery or my intestines would burst and could kill me. They told me I had a severe small bowel obstruction, caused by severe inflammation in my small intestine.

After spending 13 days in the hospital and finally leaving with an official diagnosis of Crohn’s Disease, I knew my mission was clearer than ever. I wanted to become an advocate for gut issues, health, and IBD. I was shocked to learn so many people I was surrounded by, truly did not understand what the disease was or had never heard of it. Yet millions of people around the world are being diagnosed with Crohn’s Disease or Ulcerative Colitis every day. Crohn’s and Colitis Disease fall under the category of IBD because it is an Inflammatory Bowel Disease. Your intestines or colon actually show signs of damage from severe inflammation. This causes them to become swollen and if not taken care of, can be life threatening or require surgery. IBS is categorized as “irritable bowel syndrome,” which truly is just food insensitivities which can be completely fixed by cutting certain foods out of your diet. That is why I struggled so much after switching my lifestyle, sadly, it was too late and the damage was already too severe, I required surgery.

What I am thankful for is what my Crohn’s Disease diagnosis has taught me. It forced me to educate myself on what I truly thought a healthy diet was and that you know your body best. It forced me to look at my life and what my priorities were. Was I putting my physical and mental health first? Absolutely not. Was I taking care of my body, exercising, moving, and fueling it with the right foods? No. I had a lot of learning to do but I was willing to put in the work. See, when you are a mom, wife, teacher, and at 34 years old, almost die and lose your life, you become willing to make changes because you hope you never have to live through those moments again. I still struggle with body image from my scars, severe PTSD from years of medical trauma and misdiagnosis, and food anxiety as I became absolutely terrified to eat.

I knew how isolated I felt living with this disease and that is what inspired me to create IBD Heroes on Instagram. A social media platform, where I started sharing the stories of Crohns and Colitis patients from all over the world, to help celebrate and connect the IBD community to give patients a voice and resources for when it’s difficult to find answers and you feel you aren’t being taken seriously. You see, Crohn’s and Ulcerative Colitis does not look the same for everyone but I know one thing we all have in common; we feel isolated. There is a reason why chronic illnesses are referred to as an “invisible illness” because often people do not “look” sick. It is a perfect “Instagram vs. reality” moment. For two years, you saw my smiling face on Instagram but what you didn’t see, were my insides slowly trying to kill me. I became determined to make this “invisible illness” visible and help educate my friends, family, and others on what Crohn’s and Ulcerative Colitis is and how to help prevent your body from chronic illness, sickness, and stress in general.

Many people ask me some of the major lifestyle changes I have made since my diagnosis and this is how I now live my life:

1. My physical and mental health come first, always. If I am not feeling at my best and do not practice self-care, I cannot take care of the things around me.

2. My partner/spouse. I make my husband a priority. We have date nights and make time for one another.

3. My child. I make time to spend with my daughter, we do things together, I tell her how much I love her and support her.

4. Exercise/Health, I have learned you have to get your body moving. Find something you enjoy and do it. Spend time outside in the sunlight, go for a walk, take a dance class, for me my passion became strength training. I felt so weak in the hospital after losing weight, I wanted to gain muscle and be strong. Lastly,

5. Work. I am a public educator and I am excellent at what I do, but that is last on my list, always. I have learned to manage my time so well at work during my week, I never need to bring anything home with me, work stays at work.

No matter who you are or what you are going through, we can all relate to dealing with something “invisible.” Whether it is struggling with your mental health, postpartum depression, a chronic illness, stress at work, trouble in a relationship, or loss of a loved one, we are always fighting something others simply cannot see. What I have learned, is the best thing you can always do, is take care of yourself and your needs. Some may call it selfish, but if putting my mental and physical health is selfish to others, I am ok with that. I have cut out toxic things from my life, I set boundaries, I have learned to say no, and I am healthy and thriving while still being a present, mother, wife, friend, daughter, and educator.

As the saying goes, “You can’t pour from an empty cup.” Take care of yourself my friends, because you are worth it.

About the author

Sarah May Campbell