Category: The Crohn’s Saga

Ah, another comic about prednisone. As I mentioned last time, a person shouldn’t be on prednisone for longer than 3 months. At this point, I’d been on it for about 4 months and it was really starting to do quite a number on me. My health was declining rapidly and I still couldn’t sleep. This meant that my body and mind were both starting to deteriorate. I was starting to get scared.

As a reminder, “The Crohn’s Saga” is an ongoing story that is intended to be read as a continuing arc. That’s why each of these entries is numbered. The flare that it chronicles began in the fall of 2015 and started to get nasty around April of 2016. At this point in the story, we are in September 2016. I want to clarify this because things in this story are about to get bad. I’m writing this in April 2017, so you know I’ll survive at least this long, but I am still sick.

“The Crohn’s Saga” came about as my way of coping with this flare. Watching my health fail while struggling to maintain my relationship and career was a lot for me to deal with. I’d tried journaling as a method of stress relief in the past, but I always tended to get wordy and dark. So, instead of journaling, I started drawing these little comics about what was going on. Every time something happened that felt like too much, I would draw it out. This helped me deal with my feelings, but it also forced me to find the humor in the situation.

After a few months, I started showing a few to my family and friends. They found them very helpful in understanding the daily realities of Crohn’s during a flare. I built all of this and I continue to post in the hopes that it will help others. In reading these, I hope that people with Crohn’s will feel like they aren’t so alone. I also hope that friends and families of those with the disease will walk away with a better understanding.

The other posts and categories exist because they make me laugh. It can’t all be about Crohn’s all the time. I hope you’re enjoying them too.

“Mama Bear” depicts one of my favorite memories of my mother. If you have already read my page “About Crohn’s Disease“, you know that I first got sick when I was 11 and that it took 6 months for doctors to make the diagnosis. This was a scary period for both me and my parents. I had tried to stay tough, but this was the day I broke. I’d never had student doctors at an appointment before and this was the gastroenterologist, so embarrassing stuff might happen. I panicked at the question. One of the students made the insensitive comment. I started to cry. My mother pulled the group into the hall destroyed them.

It must be tough to have a child with Crohn’s Disease. I’m grateful to my parents for handling it as well as they did.

And so it happens. If a flare gets bad enough, hospitalization becomes necessary. Two primary feelings here: fear and relief.

Fear is pretty self explanatory. Hospitalization means it’s serious and you’re in trouble. For me so far, 50% of my hospitalizations have ended in surgery. If the flare is bad enough, surgery can mean an ostomy. In my experience, people with Crohn’s and Colitis fear ostomies more than death.

Were you surprised to see relief? It’s true and there are a few reasons for it. First, you only get hospitalized when you are really sick, so it means that you’ll get some fluids, nutrition, rest, and pain management. Second, it validates what’s going on. Maybe this is just a me thing, but even when I’m really sick, I can’t help but wonder if I’m just being dramatic and whiny. Having to be hospitalized means it’s real. Third, you can finally let go of everything else and just focus on getting better. It may sound strange, but the best rest I’ve gotten in my life has been in the hospital. Think about it. You’re sick and in pain for months, and trying to juggle health with work, relationships, social life, and other things. Going to the hospital means letting everything else go. You can’t do anything but rest. Lastly, being hospitalized means that abstract fear becomes concrete reality. As I’ve mentioned before, people with chronic diseases tend to live in constant dread of getting sick again. Going to the hospital means that you can let the dread go and actually deal with a real problem. Kind of messed up, huh?

Regardless, you’re usually not going to be caught off guard by being told you need to be hospitalized. You know when things are bad enough that it’s a possibility. That being the case, I recommend packing ahead.

Hoot’s Hospital Packing List

• Phone charger
• Headphones
• Toothbrush, toothpaste, and floss
• Deodorant
• Nail Clippers
• 2-3 pairs of socks
• 2-3 pairs of underwear
• Laptop or tablet (wikipedia, netflix, solitaire, whatever)
• 2-3 books (different genres for different moods)
• Pen and paper (for just in case you decide to start cartooning)

Here’s something you may not know: you will never get more than 2 consecutive hours of sleep in the hospital. True, you will get plenty of rest, but it will come in bursts. Night time is a busy time. Nurses and technicians are always coming in to check your vitals (blood pressure, heart rate, and temperature), draw your blood, and give you medicine.

That said, night time in the hospital is something to be experienced. Seriously. Everything is so quiet yet so active. In those fleeting windows of time where no one is checking in on you, you are left to lie quietly in the dark with just your thoughts. Sometimes you hear commotion in other rooms. Sometimes you get air bubbles in your IV tube and the IV alarm goes off. Sometimes it’s just quiet. Either way, without the distractions of daily life, you’ll feel an uncanny awareness of yourself. It’s almost impossible to describe. It’s sort of like a peaceful insomnia. I’m sure there’s a perfect word for it in German. You process everything that’s happened and everything that could happen, but somehow, it’s alright. As I mentioned in my last post, everything unimportant fades away and somehow you just feel calm and ok.