This was my perspective earlier this week. I found myself on the crow’s nest floor with my feet up, trying to figure out what to do next.
To explain how I ended up on that floor, I have to go back several months.
That’s when I came down with that terrible cough most of you already know about. It eventually turned out to be bronchitis along with sinus problems. At times I was coughing so hard I couldn’t even take a good deep breath, and I felt like I was going to pass out.
After weeks of this, they put me on a couple of inhalers. They helped some, but not enough, so the next step was 40 mg of prednisone for five days to calm things down and give the inhalers a chance to work.
Even now, I still have an occasional coughing fit, but thankfully I can finally lie down and sleep again.
Through all of that, my Crohn’s was actually doing well. I was in remission. The prednisone wasn’t prescribed for Crohn’s. It was for the bronchitis and sinus problems.
That made this whole situation quite different for me. Normally, if my Crohn’s is in remission, I don’t need prednisone. When I’ve taken prednisone for Crohn’s in the past, it’s usually because I’m already in a flare. This time I happened to be in remission while taking 40 mg of prednisone for something completely different.
Prednisone and I go way back. I’ve been on and off it for around 40 years, so I know what 40 mg does to me.
It makes me hungry.
Really hungry.
When I’m taking it during a Crohn’s flare, that can actually be helpful. When my abdomen hurts badly, I don’t want to eat because I know eating can lead to more pain. Prednisone doesn’t always take every bit of the pain away, but it can calm things down enough that eating becomes easier. At the same time, it greatly increases my appetite, which helps me keep eating and drinking instead of losing so much weight and getting dehydrated.
But this time was different.
My Crohn’s was already in remission. I wasn’t fighting all that abdominal pain. I was already feeling pretty good, and then 40 mg of prednisone gave me even more energy. My head was clear. I was motivated. I started running around getting things done.
For those few days, I felt like a superstar.
And I was hungry enough to eat everything in sight.
That’s when I started thinking about all the restaurants Char and I used to enjoy.
Over the years, our choices have gotten smaller because I stay away from gluten, dairy, fried foods and spicy foods. Those things have caused problems for me over and over. BIBIBOP is one of the few places we can go where I don’t have to think much about what I’m eating.
But now I started wondering.
I’m in remission.
I feel great.
Maybe I can eat some of those old foods again.
Now, if you’re already thinking this probably wasn’t my smartest idea, Char was thinking the same thing.
More than once she looked at me and said, “Oh boy. Are you sure you want to do this?”
Yep.
I wanted to know.
So the experiment started.
I tried Arby’s steak nuggets.
Nothing happened.
Then Five Guys. I got a burger without the bun and told them about my food allergies, so they changed gloves and took precautions.
Nothing.
I had rice, chicken and vegetables at a Thai restaurant.
Still nothing.
While visiting Mom in long-term care, I ate a few candy bars. I even ate a couple of her McDonald’s french fries, which I normally avoid because of the wheat and milk derivatives in the ingredients.
Nothing.
Then I had a piece of Raising Cane’s breaded chicken.
Still nothing.
At this point I’m thinking, okay, this is getting interesting.
So I had a milkshake.
Nothing.
Then I went back to one of my favorite Chinese restaurants that I hadn’t eaten at in a very long time. I ate fish and other fried foods.
And it was good.
Really good.
Still nothing.
By this point I had pretty much gone crazy with my little experiment.
No stomach pain. No diarrhea. No aching feet. No joint pain.
For the rest of those five days, everything seemed fine.
I started thinking maybe I had found a loophole.
Maybe being in remission had changed things. Maybe Entyvio, the biologic drug I take for Crohn’s, was working well enough that I could loosen up. Maybe Char and I could start going back to some of those restaurants we used to enjoy.
But there was one pretty big part of my experiment I wasn’t thinking enough about.
I was taking 40 mg of prednisone every day.
Prednisone can suppress inflammation and symptoms very quickly. So feeling great while I was eating all of this didn’t necessarily mean everything was going to stay that way once the prednisone was gone.
I don’t know exactly what was happening inside my body during those five days. I only know I felt great.
Then the five days ended.
I stopped the prednisone.
For another couple of days, I still thought I had gotten away with it.
Then my body started talking.
First, the little toe on my right foot started hurting. And when I say hurting, I mean it felt like somebody was trying to pull the thing off.
Then the bottom of my foot started hurting.
Then all my toes.
It felt like an elephant was standing on my foot.
Then my right wrist started hurting so badly I could hardly move it. It honestly felt broken.
Then the left foot joined in.
Before long, it felt like I had an elephant standing on both feet.
The mornings were the worst. There were times when I literally could not stand when I got out of bed. I had to get down on my knees and crawl through the house just to get to the bathroom.
Then my ribs started hurting. Even the ringing in my ears seemed louder.
Then came the abdominal pain, diarrhea and blood.
Just days earlier I was eating fried food and drinking a milkshake, thinking I had figured something out.
Now I was crawling through the house on my knees.
That changed my thinking pretty quickly.
And that brings me back to the crow’s nest floor.
I was there because my feet hurt so badly that standing on them had become almost unbearable.
Even when my Crohn’s is in remission, I stay away from gluten, dairy, fried foods and spicy foods because I know what they’ve done to me over the years. If Crohn’s starts acting up, I become even more careful and usually go back to broth and simple foods until things settle down.
This time I deliberately ate foods I normally wouldn’t touch just to see what would happen.
Well, I found out.
What’s interesting is that years ago it didn’t always happen this quickly.
I could have a flare, go on prednisone, get back into remission and slowly start eating some of those foods again. Sometimes I could go a year or two before Crohn’s came back with a vengeance.
The reaction wasn’t always immediate.
But after more than 40 years of living with Crohn’s, I know my own body.
Gluten bothers me.
Dairy bothers me.
Fried foods bother me.
Spicy foods bother me.
I’ve told GI doctors this for years. I’ve been to more of them than I can count. Many times I’ve gotten that look like food really isn’t part of the equation.
During a flare, I’m told to back off and eat simple foods. Then once things settle down, I’ve often been told I can go back to eating normally.
That may work for somebody else.
It doesn’t work for me.
Looking back, I can also see things I didn’t understand when I was younger. There were times my stomach seemed fine, but I would eat something and the next day my joints would hurt terribly. Sometimes my ribs would hurt so badly that taking a deep breath felt like I had broken one.
Back then, I just knew I hurt.
Nobody really explained to me that Crohn’s could affect other parts of the body too.
We’ve learned a lot about this disease over these 40-plus years.
And I’ve learned a lot about my own body.
This experiment didn’t teach me which foods bother me. I already knew that.
It taught me how easy it is for 40 mg of prednisone to make me feel so good that I start thinking maybe the old rules don’t apply anymore.
Eventually the pain became too much, so now I’m on another course of prednisone.
I’m now on a prednisone taper, starting at 40 mg, because this flare has become pretty serious.
But this time it’s for the Crohn’s flare.
And once again, I’m amazed at how quickly it works on me.
I took the first 20 mg of that day’s 40 mg that morning, and it wasn’t long before the abdominal pain stopped. The diarrhea and blood stopped. The pain in my feet and toes disappeared.
I went from lying on the crow’s nest floor to running around the house getting things done again.
My head is clear. My energy is back. I feel normal.
I feel like that superstar again.
But I know prednisone isn’t something I can stay on forever.
One thing I do know is that my food experiment is over.
No gluten.
No dairy.
No fried foods.
No spicy foods.
I’ve tested those things enough.
And yes, Char warned me.
I probably shouldn’t put that in writing because she’ll remind me of it later.
But she was right.
I’m also thinking more about what all these years of prednisone may have done to my body. I’ve been on and off it for around 40 years, and repeated steroid use can affect the bones and eyes.
Over the past few years, I’ve had several fractures in my feet and ankles. I don’t know whether prednisone played a part, but after all these years, I think it’s time to have my bone density checked and see where things stand.
So where does all of this leave me?
Probably eating a lot of the same boring foods.
Learning to be satisfied with what I know I can eat.
Trying to keep my stress down.
Listening to my body.
And stopping these little experiments.
But there’s something much bigger I’ve been thinking about through all of this.
When I feel good, especially when prednisone has me feeling like a superstar, it’s easy to become comfortable here.
There are restaurants to enjoy, places to go, things to buy and things to do.
And I’m thankful for the good days.
But pain has a way of reminding me that this world isn’t home.
When I hurt, when I’m tired, when I can barely walk, or when I don’t know what tomorrow will bring, I find myself leaning on Christ more.
And maybe the prayer doesn’t always have to be, “Lord, take this away.”
Maybe sometimes it needs to be, “Lord, help me through this. Teach me through it. Keep my eyes on You.”
It isn’t that pain itself is good. I’m thankful when I feel well.
But the hard days remind me not to become too comfortable here.
They remind me that something far better is coming.
And I am most definitely looking forward to my new body.
No Crohn’s.
No aching feet.
No broken bones.
No prednisone.
No wondering what tomorrow morning will feel like when I put my feet on the floor.
But even better than having a body without pain is Who we will be with.
For those of us who belong to Christ, our hope isn’t simply that one day we won’t hurt anymore.
Our hope is Christ Himself.
Philippians 3:20–21 says that we are waiting for the Lord Jesus Christ, “who will transform our lowly body to be like his glorious body.”
I’m thankful for the days when I feel good.
And through the hard days, I’m thankful the Lord reminds me that this isn’t home.
One day there will be no Crohn’s to treat.
No prednisone needed to make me feel normal.
No pain to get through.
And most important of all, we will be with Christ.
Nothing this world has to offer can compare with that.
