Living With Crohn’s Disease: The Battle People Don’t Always See

There are some battles that people can see, and then there are the battles that happen quietly inside your own body. For me, one of those battles has been Crohn’s disease. I was diagnosed when I was just 12 years old. At the time, there wasn't nearly as much understanding about Crohn’s disease as there is today. My parents knew something wasn't right. I wasn't growing like the other kids my age, and I didn't eat like they did. My parents took me to several doctors, and after all of testing, I was finally diagnosed with Crohn’s disease. At twelve years old, having so much medical testing and being in the hospital was mentally unsettling and I didn't fully understand what was going on or what that diagnosis would mean for the rest of my life. I just wanted to fit in with all my peers.

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  Age 12

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(images from left to right: age 10 prior to diagnosis, age 12 when I was diagnosis, 16 through 19 just living with Crohn's)

When Crohn's Became More Than a Diagnosis

For several years, Crohn's was something I knew I had, but it wasn't always something that completely controlled my life. That all started to change when I reached high school.

The problems became more significant, and by the time I was in my senior year of college, I was in a very serious place. I had lost so much weight that I was down to 76 pounds, and the doctors told me that if I lost any more weight, they would hospitalize me. My body was struggling to get the nutrition it needed, and Crohn's was taking a tremendous toll. Not long later, Crohn's affected my gallbladder, and I eventually had to have my gallbladder removed. But that wasn't the only decision I was facing, the doctors wanted to remove part of my intestines. The area causing the problem was right where my small intestine and large intestine connected. Because of where it was located, there was a possibility that I would need a colostomy bag if they could not reconnect everything properly. I wasn't willing to make that decision without some reassurance that things could be put back together without major complications. At the time, they couldn't give me the reassurance I needed, so I said no. Instead, they tried different medications, and some of them helped, but there was a cost.

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(College years: first two images are when things started to get more serious. Middle image: What 76 lbs really looked like on me (and 36 pills a day) when not trying to hide it, also during the period it attacked my gall bladder, last two images are college graduation after my gall bladder was removed and 36 pills were a normal part of my day.)

For years, I took medication after medication and at one point, I was taking more than 36 pills a day. Some medications were prescribed because of the side effects of other medications and they also had me taking daily pain medication. Medical knowledge surrounding long-term pain medication was very different during those years than it is today. Looking back, those years are difficult to remember clearly, I lost time and memories. And I eventually reached a point where I knew something had to change, so I stopped taking everything. That was not a decision I made lightly, and I am not suggesting that someone else should stop prescribed medication. This is simply part of my story and the point where my own journey took a different direction, because deep inside me I knew I had to find a healthier way to care for my body.

Learning My Own Body

Eventually, the doctor I had been seeing would no longer treat me, and the journey started to look elsewhere and for other resources. I sought the help of a nutritionist and a physical trainer, and slowly, over time, I began learning something incredibly important:

My body was trying to tell me something. I started paying attention to what I ate and I learned which foods seemed to trigger my symptoms; some of which changed over time.

I learned that exercise could make a tremendous difference for me and that stress was not something I could simply ignore.

Crohn's disease is an inflammatory bowel disease. It can cause inflammation anywhere along the digestive tract, and symptoms can include severe abdominal pain, nausea or vomiting, diarrhea, fatigue, weight loss, loss of appetite, and other complications. What a medical description doesn't really tell you is what it feels like to live with it. For me, Crohn's can feel like my entire digestive system has suddenly decided it needs to work all at once, or just simply stop. It can be incredibly painful and drain every ounce of energy from me. The pain has been so severe at times that I have passed out. Your body is literally attacking you from the inside out.

The Exhaustion People Don't See

One of the things I wish more people understood about Crohn's is the exhaustion. When your body is fighting inflammation (that it can cause on its own) and trying to deal with everything happening inside of you, it can consume an enormous amount of energy.

You can wake up and be having a wonderful day, and randomly out of the blue your digestive track starts to hurt. Sometimes I can be having what someone else might consider a "mild" flare, and yet I feel completely drained. There are days when getting up and doing normal things feels like an accomplishment, and I've had to learn that it's okay to have those days. It's okay to rest, it's okay if I can't accomplish everything on my list, and it's okay to say no. That last one has been a particularly important lesson over the years.

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(What you don't see in these pictures is the exhaustion behind them, or the fact I had to force myself to eat. What you will see in all my pictures is a women determined to not let a disease run her life, and a support system that God truly blessed me with.)

Stress, Emotions, and Learning to Say No

Over the years, I've discovered that stress and emotional situations can be significant triggers for my Crohn's. That doesn't mean stress causes Crohn's disease, but for me, stress can certainly affect how my body responds and can contribute to flare-ups. Learning how to navigate stress is still an ongoing challenge, and learning to set boundaries has been a challenge on its own. I am learning that not every problem (mostly other peoples problems or drama) requires my immediate attention or even attention at all. I also, don't have to say yes to everything, and I have learned that sometimes the healthiest word I can say is: No. There is freedom in that word!

Why I Choose to Freelance

There is another BIG part of living with Crohn's that people don't always understand, and that is how it has affected my working. I am a creative person. I have spent many years as a graphic designer, and I genuinely miss working alongside other people—being part of a team, brainstorming ideas, sitting around a table and creating something together.

Oh how I would love to have that experience again, but Crohn's doesn't always cooperate with my plans. You never know when a trigger or flare is going to happen.

When one hits, sometimes I need the bathroom quickly and/or repeatedly. (not all bathrooms are clean enough for someone with Crohn's or set up adequately. There are many of times I need to lie down, its part of that exhaustion and fatigue. Sometimes the pain is so intense that I simply cannot function normally, where I might need to soak in hot water. There have literally been times when Brian has left work and had to come get me. Imagine being in an office when that happens.

Many people don't understand chronic illness. From the outside, someone may look perfectly healthy while their body is fighting something they cannot see. Missing work unexpectedly, spending long periods in the bathroom, needing to lie down, taking a hot bath or having days where you simply cannot function can be difficult in a traditional workplace, That is one reason I choose to freelance and work from home. It isn't because I don't want to work with people, or enjoy being part of a creative team. I love being around creative, unique, eccentric, fun people. It is because I have learned what my body needs and working from home gives me the flexibility to care for myself when a flare happens.I can stop and rest as needed. I do have one prescription that I can take if things get to painful, it will numb my digestive track. It takes about 20-30minutes to work, but it makes me very tired. I typically try and push through, but there are just times when pushing through takes more energy that my bod simply does not have. Have that flexibility of working from home, has made it possible for me to keep designing and creating, and I'm grateful for that. I am very grateful for employers who understand and support those with chronic illness and allow them to work from home.

There Have Been Good Days and Bad Days

After all these years, I wish I could say I've figured it all out, but I haven't. There are good days, and there are bad days. There are seasons when I felt like I had a pretty good understanding of my body and seasons when something changed and I had to start learning all over again. That's one of the frustrating things about Crohn's, it isn't always predictable. What bothered me five years ago may not bother me today. Something that I could eat without a problem for years may suddenly become a trigger. Stress that I once handled well may affect me differently in another season. I pay attention, listen, learned, and try to care for my body in ways that have personally helped me. For me, that has included paying attention to nutrition, exercise, stress management, rest, and other approaches that I have found helpful over the years, while also using medical treatment when needed. I don't believe there is one answer that works for everyone, as I have travelled this path for over 40 years now, I have learned that every person's Crohn's journey is different.

God and Faith in the Journey

There is another HUGE part of this story that I cannot and will not leave out. God and my faith. Even before my walk and relationship with Jesus, He has always been there. There are plenty of moments when I have been so frustrated with my body. Moments when I have wondered why I have to deal with this, and questioned God. Moments when I have been exhausted from just being exhausted, and moments when I simply needed to surrender what I couldn't control. Countless of days or nights, in the bathroom, sometimes even sleeping in there because I have been to drained to move. He has always been there, in the smallest and biggest of ways. Moments when all i could do was continually cry out or whisper for Jesus. Jesus and I talk a lot in the bathroom, or while I have to rest, they have been some of the best conversations in my life. We have some of the most deepest conversations during those moments, mostly one sided and me asking questions like "why I haven't been healed like the lady reaching for His robe. I do have that kind of faith, don't I?" My faith doesn't mean I never struggle, it just means I don't have to struggle alone. I've learned to bring both the hard days and great days to Jesus. All the pain, frustration, fear, and uncertainty, I take them to Him now. The days when my body says, "You aren't doing anything today," even though my mind has a list of twenty million things it wants and "needs" to accomplish. Yes, we talk about that too. He reminds me, we will try again tomorrow but He needs me to talk to Him and rest for that moment.

Sometimes faith looks like moving forward and sometimes faith looks like resting, but most of the time faith looks like saying, "Lord, I don't understand this, but I trust You with today."

If You Live With Crohn's, I See You!

If you have Crohn's disease—or another chronic illness like IBD—I want you to know something: You are not lazy! You are not making excuses! You are not weak because you need to rest! (if anything you are some of the strong people I know, as the battle is real.)

And you don't have to prove how sick you are to deserve compassion. People may not see what is happening inside your body, and they may not understand why you canceled plans, or why you spent so much time in the bathroom. They may not understand why you went to bed at 7:00 p.m, or why you can accomplish something one day and barely get out of bed the next; but you know and your body knows, and above all else God knows. He is most important anyway! Learning to listen to your body is not giving up, it's wisdom.

This Is My Story, Not Medical Advice

I want to be clear about something because my story is just that—my story. What has helped me over the years may not be appropriate for someone else. Crohn's disease can range from mild to severe, and treatment needs to be individualized. Nutrition, exercise, stress management, medications, and other approaches should be discussed with qualified healthcare professionals who understand your particular situation. I share my experience because I know how lonely chronic illness can feel, and how Jesus has been there with me through it all. If sharing a little of my journey helps someone else feel less alone, and reach for the hem of Jesus robe then maybe something good can come from the difficult parts of mine.

Still Here. Still Creating. Still Learning.

Crohn's disease has been part of my story since I was twelve years old. It has taken things from me, changed my plans, affected how I work, how I eat, how I handle stress. It has taught me to listen to my body, to rest, to set boundaries. And it has taught me the importance of saying no. Perhaps most importantly, it has taught me that my life is not defined by the things my body cannot always do, but its defined by a God who created me to be and do what He needs me to do.

I am still here, still being creative, still day dreaming, still learning and always walking with Jesus through every season. Some days that walk is energetic and joyful, some days it is slow, some days I have to sit down and rest, but I am still walking and talking with Jesus, the man who knows it all and loves me anyway and that will always be enough.

If you are walking through a chronic illness of your own, I hope you remember this: give yourself grace. Listen to your body. Ask for help when you need it. Rest when you need to rest. And don't let an illness convince you that your life has no purpose.

There is still beauty to be created, there is still a story to be written, and there is still ... His Living Water.

Special thank you to my amazing daughter who had to sit and watch her mom go through some of the most hardest and difficult days, but she was there bringing me wash rags, soups, and a lot of times just company. I should have know then, that she would be a wonderful mother herself one day! I love you Woodle Doodle™ Thank you!