Crohn’s Disease Flare-up: One Month In

As November comes to a close, I am surpassing one month in to this recovery from yet another Crohn’s Disease Flare-up. Photography, as it has in the past, has been my savior.

If you need to catch up on how I got here check out this article first and then this one, but make sure you come back!

What Exactly is a Crohn’s Disease Flare-up?

Now bear with me. I know you came here for photography, but spreading knowledge of what this horrible disease does is very important to me, and it’s IBD (inflammatory Bowel Disease) Awareness Week.

One of the biggest questions I’m asked is what exactly is Crohn’s Disease? So quickly I will say that Crohn’s Disease is believed to be an immune disease and it causes inflammation that affects the entire digestive tract from the mouth all the way down. Since the Immune system is in the gut, once it flares up, it ravages every part of the body. In my case it affects my throat, skin, hair, bones, joints, nerves, even taking away my ability to walk. More on that later.

Crohn’s Disease Flare-up 2024

My last big flare-up was in 2019, and it affected me almost exactly the same way it is this time. I’ve had the same symptoms, but it was a much different attack this time around. I had basically no warning. At least not anything that set off alarm bells for myself or my doctor. Nothing aside from my usual back issues that I’ve been dealing with since I was a kid, had me in bed.

I had been in remission for exactly 5 years and was about to celebrate that milestone when one day while at my chiropractor, my daughter got really sick and was vomiting everywhere. My stomach sank, not only because I was worried about her, but I also knew that if I caught whatever she had that would be very bad for me. I was right. A few days later I was sick in bed with her. The only difference was, she got better as I got worse. I knew that this bug set off my Crohn’s Disease.

Later the doctors would say that my disease had been flaring up before that as evidenced by my biopsies, but the bug lit the fuse. In a way, it was good because it alerted me to what was going on that I couldn’t see. I had no idea that before that, under the surface, inflammation was raging but giving me no noticeable symptoms. That really scares me.

Fast forward, my health declined extremely fast. To the point that I was basically delirious. I was severely malnourished, anemic, and dehydrated. The last thing I remember before going to the hospital was my wife having to carry me to our safe room during Hurricane Milton because we were being ravaged by tornadoes.

When I came home from the hospital I felt as if I had just woken up from a coma because I could barely remember how I’d gotten here.

What Has Happened!?

“What the hell happened?” That was all I could keep asking because I went from working out and trying to get fit, living my life in remission for 5 years, and learning to be a new mom, to so weak that I couldn’t walk without falling. Now down almost 30 lbs and have a fistula again (a hole on my stomach that connects to my intestine like a stoma).

When I came home from the hospital, I was in shock. It took me a while to adjust to my new reality. Here I was now sleeping away from my wife in an adjustable bed. Neuropathy had once again set into my feet and legs. Severe malnourishment, dehydration and blood loss weakened me to the point that my legs felt like lead. I now needed diapers and a commode by the bed, a wheelchair and walker to get around, and I needed assistance to do anything and everything. I’d wanted to cry and scream but instead I resorted back to what I did in 2019 when I rediscovered film. I have just drowned myself in my cameras and photos.

What Now?

I knew from past experience I’d have to rehabilitate myself because the medical system here is severely lacking. Little by little I have worked my way up to being able to walk with a walker unassisted. I’ve also started to be able to do most, if not all, daily tasks without help from another person. I often pay for it with pain by the end of the day, but I’m used to a lot of pain at this point.

I’ve also started a new medication for Crohn’s Disease. I am grateful for that because in the meantime I have to be on Prednisone to stabilize me until it starts to work. That medication is no joke. On top of what I am experiencing from the Crohn’s Disease Flare-up, I am also experiencing teeth sensitivity, moon face, rapid heart beat, hands and leg cramping, dry skin, hair loss, and insomnia from the steroid alone.

But I’ll keep going. I’ll keep pushing, and laughing, and smiling because that’s all I can do. I keep playing with my vintage cameras and taking pictures to keep my sanity. My family keeps me from falling apart.

Unfortunately, I can’t develop my own film right now like I normally would, so I have to send it out. It’s crazy expensive to do this so I can only develop a few rolls per month. I wanted to at least have pictures so I can keep this journal series going. So that’s what this is.

Each week I have shot with a different SLR from my collection. I am currently also restricting myself to 35mm focal length for a separate quest that I’m on. The first week I dusted off my favorite SLR, the Nikon F. Here you can see I ran Kodak TX through it and pushed it to 800.

Crohn’s Disease Flare-Up – A Day

Alaina sleeps with Mommy in our bed, and I sleep on the other side of our room in my electric bed. I’m often awake by 4am because of the Prednisone so I write these articles in the dark or listen to an audiobook while they sleep.

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In the mornings my wife goes to work so my mom has to come over and help me look after our daughter. I am not going to lie, this has been extremely difficult on many levels. She’s only just turned 2 so we are navigating this whole thing while trying to make sure she doesn’t become traumatized from it all. Honestly, I had always hoped she’d never see me this sick. I guess that was naïve.

She grew so much while I was down. I was barely there when her second birthday came around, and when I came home from the hospital it felt like she was a different kid. They grow and evolve so fast that you can miss everything in the blink of an eye. There are things this disease has taken from me that I will never get back, but sadly I have come to know that this is just how life works. There are some things you have to stomach whether you want to or not. For me this has been one of those things.

Around 7:30 am Alaina wakes up and we all have breakfast in our beds together.

Then Kelsey goes to work (she works from home luckily) and my mom comes over. I have physical therapy either with a PT or on my own and then it’s usually just a very long and exhausting day of keeping up with Alaina.

Through it all I take photos and try to record everything. I know one day I’ll be on the other side of this again. The hope is that this medication works even better than the last one and will therefore keep me in remission even longer this time. Key word here is hope.

Final Thoughts

If you have made it to this point I want to give you a big hug and thank you! You may be wondering why would I share all of this personal information and why will anyone care, and you may be right. A lot of people don’t care. That is a real problem in society today.

This has been one of the hardest moments of my life. I’ve experienced a lot of horrible things over the years, but this experience has by far been one of the hardest to adjust to. Having your life come to a sudden halt as a new mother and suddenly become extremely ill is not for the weak. You have no choice but to be strong when others depend on your life.

However, I know that everyone has their own burdens to bear and just don’t have room for anyone else’s problems. That is why it is all the more important to spread awareness about these diseases. Without attention being given to them there is no one caring. Without everyone sharing their stories there is no money given to research and therefore no medications for people like me to stay alive. I say all of this to tell you to share your story! It is important!

Hopefully you’re enjoying this journal series. I know that it’s very personal and it may not be fore you. That’s perfectly fine. If anything, this is for me to look back on one day.

Until next time, stay motivated and keep shooting.

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