The Prednisone Rollercoaster

Most of us living with IBD have been put on steroids. I have this love/hate relationship with the drug. When I woke after my colonoscopy I instantly had a perscription for Prednisone in my hand. I had no previous knowledge of what the drug is like, nor did I realize that it was one of the most difficult ones to stop taking. I suppose when the doctor sees severe inflammation they jump right to Prednisone for a quick solution. I would have liked to discuss my options, but when you know so little about IBD, you're vulnerable.
At first I was at 40mg a day. The drug made me feel lethargic and emotional. However, after a few weeks my stomach aches and cramping reduced greatly. At the beginning I had this euphoric feeling that I was getting better. After two months I was back to the gym and able to make it through an entire work day. The only side effect I noticed was acute exhaustion.
After a month and a half I began to notice the long term affects of the drug - still mild in my mind. My face broke out in a dermatitis-like rash. My cheeks became puffy and more rounded than normal - I call this squirrel cheeks. The real name is moon face (the most difficult for me to accept). This is more of a vanity issue for me. I'm a girl! My "peach fuzz" all over my body grew darker and thicker. I noticed a mild, fatty hump under my neck (called a buffalo hump). I tried to laugh about my appearance. I would joke with people saying I was storing my lunch in my cheeks. My fiance bought me a buffalo stuffed animal to lighten my mood. I try my best to keep a sense of humor. Somehow I didn't experience weight gain - the only positive. Every other symptom listed for Prednisone, I eventually got after two months! It wasn't until I began tapering off the drug that I experienced the true fire and brimstone.
Tapering off Prednisone feels impossible. At first I thought it would be a piece of cake. I was hoping I could taper by 5mg, with trivial problems. Clearly I didn't understand how effortful this attempt would be.
I developed daily migraines, which led to seeing a neurologist. Which led to more medication, more money spent. I was constantly put back on a higher dose to relieve the withdrawal symptoms. Every few weeks it felt like I was back to square one. The lower the dose, the worse my symptoms became. Today I am still at 5mg, because tapering off has been so difficult. At this point, I'm ready to deal with the side effects and get off the atrocious steroid. To me, Prednisone is just masking my problems. Without being at 10mg or higher, my stomach pain has been severe. Right now I'm questioning if I'm experiencing adrenal insufficiency (I will know this week). I've looked at a list of withdrawal symptoms and can relate to every one. I am a Google addict. Just one more thing for me to worry about and feel like a hypochondriac.
I still have a list of questions I'm ready to present to my GI doctor this week. Especially because I started an anti-TNF treatment called Cimzia in November. How can I possibly know if it's helping while I'm still on Prednisone? If my current pain is all related to Prednisone, then I refuse to increase my dose. I know I would feel better if I was at 10-15mg, but eventually I would have to begin tapering and go through the agony....again!
Since this disease is still new to me, I'm unsure what my stomach pain means. I'm comfortable trusting my judgment, but unsure what constitutes a flare. If Crohn's means having flare-like symptoms for a month at a time, then I'll live with it. I have no other choice. However, if it's all caused by the Prednisone, I will continue to taper and never look back. I am determined to be off Prednisone. I know my life will have some normalcy once I'm off the steroid. Hope is what will motivate me to get off this frustrating drug.


These are a few pictures that display the "moon face." I have seen others have it more severe, but to me it's enough to cause bother.
Before Prednisone:









After taking Prednisone (also at a lower body weight):

The Core

The center of my body is the core to my existence...
It radiates through to the tips of my fingers...
When it's twinged, it creates my body to spiral into mystification...
I'm at a loss for explanation...
I'm at a loss for alleviation...

The center of my body consumes my daily timetable...
It causes a hesitance to my joy...
It causes arrest to my character...

I'm in control of how it manipulates me daily...
I fight its actions...
I govern my reactions...

The center of my body has a diagnosis of forever...
When it's cordial I welcome its presence...
When it's harmonious I walk on water...

My bond with the center of my body is everlasting...
I can welcome its companionship...
I can be calm toward its boundless grip...

My core,
My center,
My life foe,
My flame.

F is for forever

The moment you are diagnosed with Crohn's, your life changes. All of a sudden you have to come to a realization that this disease will be forever. You've lived with it probably for years before your diagnosis. Yet, the official declaration does not make it easier.

I distinctly remember waking up after my colonoscopy and seeing the doctors pensive expression. He didn't want to perform the colonoscopy in the first place. His exact words to me were, "a little diarrhea is no reason for a colonoscopy." He proceeded to tell me he was sorry that I have Crohn's, especially when he saw the tears stream down my face. He said that most likely I had been living with the disease for three years, easily. Of course I was immediately upset. I had been going to gastro doctors for years trying to figure out what caused my stomach pain. Why was it that it took a nurse in the ER to recommend a colonoscopy? She was also the one who felt I had some kind of auto immune deficiency. I was wasting a significant amount of money going back and forth to the ER. A cat scan here, an endoscopy there - nothing. Even after the ER nurse requested an emergency colonoscopy, I had to argue with the doctors. The next day all the nurses in the gastro office were demanding to the doctors to perform the colonoscopy. A nurse named Judy said, "Look at her, she has a ton of canker sores in her mouth. She definitely has something going on in there." Judy went to each doctor personally trying to squeeze me in for the procedure. She was determined to find a solution to my daily obstacles. She handed me a free container of Movi-Prep. Off I went to my brothers to spend the night...on the toilet! My mom told me to make a bed near the bathroom. Instead I decided the living room was close enough. I lit some candles and dimmed the lights in the bathroom. If I was going to spend the entire night in there, I wanted to be somewhat comfortable. If only there was a toilet built into a recliner - now that would be amazing for Crohn's patients. The entire time I was drinking the Movi-Prep I was hoping it was worth it.



Days after my procedure I was still in shock. How do I live with this disease? What does this all mean for my future? Do I always have to be on medication? Then came every ones opinion's. The thing I had to remember is: people care. Everything they tell you is out of love. No one can truly understand what it's like to have this disease. People can read literature and experience someone close to them living with Crohn's. However, you're the only who has to live with it every day. Some days I feel great and have no symptoms at all. Other days I feel like I've swallowed shards of glass. People will see you feeling better for a moment. As soon as you're not well, they think, "Well, I thought you were doing better? You seemed ok the other day?" I'm exhausted, which makes me feel lazy. I barely have enough energy to cook (thank goodness for Antal), clean, shower and exercise. I have to tell myself that this is all NORMAL. I believe there are stages a person goes through after being diagnosed. I'm still lingering between the denial and anger stage.

It becomes difficult to stay positive. I wake up each morning unsure if it will be a good or bad day. I know that eventually I will get back to being the energetic, crazy Carly everyone knows. I've been known for joking about bowel movements. Well now I truly have a reason for this humor. If I don't laugh, I won't stay positive. This journey requires an ocean filled of humor. So here I go...let's laugh about poop, farts, stomach grumbles and belching! I'll end this note with a toot.

Here's My Gut Feeling

This blog is my way to express my personal experience with Crohn's as an individual. I'm still learning and do not claim to be a medical expert. I want this blog to reflect the comedic and serious side of living with Crohn's Disease. At times you have to laugh at the embarrassing moments. At others, you feel sorry for yourself - which is totally acceptable in my opinion!
My fiance and I will be writing a book about our intimate relationship with Crohn's Disease. I'm more than excited to begin writing. I will discuss our adventure gathering information and putting together every chapter. I hope this blog will allow others to not feel alone living with IBD.
More to come....