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 there, 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.
It went on for weeks and weeks. Eventually they put me on a couple of inhalers, including one with a powder medication that I had to breathe deep into my lungs. I stayed on those for a while, but they weren’t doing enough. They wanted me to keep using them, so the next step was 40 mg of prednisone for five days to calm things down and give the inhalers a chance to start working.
Through all of this, my Crohn’s was actually doing well. I wasn’t having a flare. I was in remission.
The prednisone at that point wasn’t prescribed for my Crohn’s. It was for the bronchitis, coughing, and sinus problems.
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.
It also gives me energy, clears my head, and makes me feel pretty good.
So there I was. My Crohn’s was in remission, I was on 40 mg of prednisone, I felt great, and my appetite was telling me to eat everything in sight.
That’s when I started thinking about all the restaurants Char and I used to enjoy.
Over the years, that list has gotten smaller because I avoid gluten, dairy, fried foods, and spicy foods. Those things have caused problems for me over and over again. BIBIBOP is one of the few places we can still go where I don’t have to think too much about what I’m eating.
And I started thinking, huh.
I’m in remission.
I’m on prednisone.
I feel great.
Maybe I should try some of these foods again and see what happens.
Now, if you’re already thinking this probably wasn’t my smartest idea, Char was thinking the same thing.
Several times 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 went to Arby’s and got the 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.
Then a Thai restaurant. Rice, chicken and vegetables.
Still nothing.
While visiting Mom in long-term care, I ate a few candy bars.
Nothing.
I even ate a couple of her McDonald’s French fries, something I normally stay away from because of the wheat and milk derivatives in the ingredients.
Still nothing.
Then I had a piece of Raising Cane’s chicken.
Breaded chicken. Wheat.
Nothing happened.
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 a lot of fish and some other fried foods.
And it was good.
Really good.
Still nothing.
By this point I had pretty much gone crazy with my little experiment.
I was eating things I had stayed away from for a long time, and every time I ate something, the same thing happened.
Nothing.
No stomach pain. No diarrhea. No aching feet. No joint pain. Nothing telling me I probably shouldn’t have eaten that.
So I started thinking maybe I had found a loophole.
Maybe being in remission had changed things.
Maybe Entyvio was working well enough that I could loosen up a little.
Maybe Char and I could start going back to some of those restaurants we used to enjoy together.
For five days, everything seemed to be proving me right.
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 even though I felt great while eating all those foods, that didn’t necessarily mean everything would 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 while I was taking 40 mg of prednisone.
Then the five days ended.
I stopped taking it.
For another couple of days, I still thought I had gotten away with it.
Then my body started talking.
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 right 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. I couldn’t lift much of anything. It honestly felt like I had broken my wrist.
Then my left foot started.
Before long, it felt like I had an elephant standing on both feet.
The mornings were the worst.
There were mornings when I woke up and literally could not stand up to get out of bed. I had to get down on my knees and crawl through the house just to get to the bathroom or wherever else I needed to go.
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 had been 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.
I could barely get around the house. My energy was gone. My motivation disappeared with it.
My iron was already low, and with the blood I had been losing, that became another problem. I had an iron infusion, and I’m also taking iron every day. That takes time to help, so the fatigue has been another part of all this.
And that brings me back to the crow’s nest floor.
I wasn’t lying there because I thought it would make a good picture.
I was lying there because my feet hurt so badly that standing on them had become almost unbearable.
This wasn’t something I normally did.
Even when my Crohn’s is in remission, and I’m feeling good, I still stay away from gluten, dairy, fried foods, and spicy foods because I know what they’ve done to me over the years. And if Crohn’s does start acting up, I get even more careful. I’ll back off to chicken broth and simple foods I know I can tolerate until things settle down.
This time was different.
I was already in remission. I felt great. Prednisone made me incredibly hungry. And I deliberately started eating foods I normally wouldn’t touch just to see what would happen.
Well, I found out.
What’s interesting to me is that years ago it didn’t always happen this quickly.
I could have a Crohn’s flare, go on prednisone, get things settled down, and eventually go back into remission. Then little by little I would start eating some of those foods again.
Sometimes I could go a year or two eating things I probably shouldn’t have been eating, and nothing seemed to bother me right away.
Then at some point Crohn’s would come back with a vengeance.
Those foods have caused problems for me for years. The reaction just wasn’t always immediate.
After more than 40 years of living with Crohn’s, I know that much about 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, and I’ve said the same thing over and over: when I stay away from those foods, I feel better.
Many times I’ve gotten that look like food really isn’t part of the equation.
When I’m in a bad flare, I’m usually told to back off and eat broth and simple foods. Then once things settle down, I’ve often been told I can go back to eating normally.
After more than 40 years of living in this body, I don’t agree with that.
Maybe somebody else with Crohn’s can eat those things and be fine.
I can’t.
Looking back, I also realize there were signs of this long before I understood what they meant.
When I was younger, there were times when my stomach seemed to be doing pretty well, 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 had no idea what was going on.
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 very serious disease over these 40 plus years.
And I’ve learned a lot about my own body.
This experiment didn’t teach me that these foods can cause problems for me.
I already knew that.
What it taught me is 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 got to the point where I couldn’t tolerate it.
So now I’m on another four days of 40 mg of prednisone.
But this time it isn’t for bronchitis or coughing.
This time it’s for the Crohn’s flare.
The abdominal pain.
The diarrhea.
The blood.
The pain in my feet and toes.
All of it.
And once again, I’m amazed at how quickly prednisone works on me.
I took the first 20 mg of that day’s 40 mg that morning, and it wasn’t long before things started settling down.
The abdominal pain stopped.
The diarrhea and blood stopped.
The pain in my feet and toes disappeared.
Earlier this week I was lying on the crow’s nest floor with my feet up, wondering what I was going to do next.
Now I’m running around the house getting things done.
My head is clear. My motivation is back. I have energy. I’m getting work done.
It’s nice to feel normal for a while.
Really nice.
But there’s still one question in the back of my mind.
Is four days at 40 mg going to be enough?
I don’t know.
In years past, when I had a serious Crohn’s flare, my GI doctors would sometimes keep me at 40 mg for 14 or 15 days. Then they would start cutting the dose down, leave me there for another couple of weeks, cut it again, and keep working it down until I eventually got to 5 mg.
There were times that whole process took close to three months.
So four days is very different.
Right now I feel great.
The real test will be what happens when these four days are over.
I guess I’ll find out.
One thing I do know is that the food experiment is over.
I’m going back to the way I was eating before all of this started, when my Crohn’s was doing well.
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 this in writing because she’ll remind me of it later.
But she was right.
There’s another side of prednisone I’m thinking about more these days too.
I’ve been on and off this medication for around 40 years.
Prednisone has helped me tremendously. There have been plenty of times when I’ve been in terrible pain, and it has made a huge difference within hours.
But taking steroids over and over for that many years can have consequences.
Bone loss and osteoporosis are concerns. Eye problems can be concerns too.
And over the past few years, I’ve had several fractures in my feet and ankles.
I don’t know whether prednisone had anything to do with those fractures, but after all these years of taking it on and off, I think it’s time for a bone density test to see where things stand.
So where does all of this leave me?
Probably eating a lot of the same boring foods over and over again.
Maybe part of it is training my taste buds to be happy with the foods I know I can eat instead of always thinking about the things I can’t.
Keep the stress down as much as I can.
Listen to my body.
And stop testing whether I can get away with something I already know bothers me.
But there’s something much bigger I’ve been thinking about through all of this.
Right now, on 40 mg of prednisone, I feel good.
Really good.
And look what happened the last time I felt this good.
I started thinking about restaurants.
I started thinking about everything I had been missing.
I started eating things I knew better than to eat because everything seemed fine.
And that got me thinking about more than food.
When I’m feeling good, and everything is going well, it’s very easy to become comfortable here.
This world starts looking pretty good.
There are places to go, food to eat, things to do, and all kinds of things we enjoy.
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 is going to bring, I find myself leaning on Christ more.
And maybe the prayer doesn’t always need 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 Christ.”
It isn’t that pain itself is good, and it certainly isn’t that I’m not thankful when I feel well.
But the hard days remind me how easy it is to become too comfortable here.
The good days can make me want to hang on to this world.
The hard days 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 iron infusions.
No wondering what tomorrow morning is going to 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 I’m thankful that through the hard days, the Lord reminds me not to become too comfortable here.
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.
