Introduction: About me and my Crohn’s

I have Crohn’s disease. I am recently married to the love of my life Isaac. I am 25 years old., and I have a morkie Izzy who I am obsessed with. I was born and raised in Edmond, Oklahoma and graduated from Oklahoma State University in 2009. Go Pokes! I met my husband two and a half years ago through a singles group at church. He is everything I prayed he would be and more.

Let’s back up about a year ago, when I was just about to have my first colonoscopy. How many 25 year old women can say they have had a colonoscopy? The only people I could relate to at the time were my mom, who is 53, and my grandparents, who are in their 70s. Ha! My colonoscopy was scheduled due to the fact that I had been having ongoing stomach pains, gas, diarrhea, nausea, fatigue and bloody stools. I was very stubborn about seeing a specialist, and after much prodding from my mom and my husband (boy friend at the time), I decided I had become miserable enough that I needed to see a gastroenterologist. He immediately scheduled me for the colonoscopy.

Everyone will always tell you how terrible the prepping part if for a colonoscopy. But for someone who was having constant diarrhea already, it was nothing! It was a breeze. About a week later, the test results came back. My GI doctor called me on a Friday afternoon to tell me that I do in fact have Crohn’s disease.

What is Crohn’s disease? I had no idea. I had never heard of it. All I heard was the word disease, which did not sound good, and something about “no cure.” My doctor started me on a steroid pack for over the weekend and made an appointment for me and my family to visit with him on that Monday.

That steroid pack over the weekend was like a miracle drug to me. I went the whole weekend with only one bowel movement! Ha! I had no idea that was what “normal” felt like. I had forgotten that it is not normal to visit the bathroom 10-20 times a day!

The next few months were a wild rollercoaster. I had no idea what to expect and was not given much direction.

Let me give you a little background on what Crohn’s disease is. “Crohn’s disease is one of the most common forms of inflammatory bowel disease (IBD). Believed to be caused by an autoimmune process, Crohn’s disease is characterized by chronic inflammation of the gastrointestinal tract, and potentially of my different organ systems throughout the body (Crohn’s Disease:Your Questions. Expert Answers)”

My doctor put me on 40 mg of prednisone (I have a love/hate relationship with this drug), Pentasa, Endocort, Xanax (to help me sleep and calm my stomach), Align and a prenatal pill. That was about 18 pills a day! My nutritionist at the time suggested I start taking a pre-natal, because they contain the best vitamins and nutrients for someone who cannot retain nutrients, which I cannot when my intestines are extremely inflamed.

 Although my intestines are chronically inflamed, my system can be more inflamed at times when it is not under control. When this happens, we call it a “flare.” Periods of flares are not fun, and I feel like my intestines are raging mad at me. Taking drugs is supposed to help keep the angry intestines under control. Sometimes the drugs work, sometimes they don’t. Every Crohn’s patient is different with how their body decides to respond.

Prednisone was an immediate fix that helped keep my symptoms somewhat under control so that I could begin to function better in my daily life. I say I have a love/hate relationship with the drug, because yes it does provide me with some immediate relief (the love part), however it does come with some side effects (the hate part), which do increasingly get worse the longer you are on the drug. Side effects for me include: extreme highs and lows, very jittery or very tired, sweating, hot flashes, feelings of puffiness throughout my body, and very emotional. Ugh!

In the fall of 2011, I was on Prednisone for 4 months, because it took that long for Pentasa and Endocort to begin working properly in my body. By the time I was ready to wean off of Prednisone (and boy was I ready!) it would take another month just to wean my body off of it.

Word of advice: Never stop a drug suddenly when you have been taking continuously. It is very dangerous. Call your doctor for a “wean schedule.”

On November 5, my boyfriend of a year proposed to me after a super exciting OSU football game in Stillwater, Okla. I was elated! Wedding planning for my dream day could begin! When I look back on that time, I was so excited to be engaged, yet felt so miserable and sick. My Crohn’s was not under control yet and I was in the process of weaning myself off of the prednisone. Weaning is not a fun process either, because your body is having withdrawals from the strong drug.

Somehow, I made it through the holidays and had secured a photographer, a venue, bought my wedding dress, picked out my florist and my bridesmaid dresses all before the new year of 2012!

By February, I was beginning to feel so much better and more like myself again. The closer I got to my wedding, the more I was thinking I could be close to remission!

Remission is a term used with Crohn’s disease meaning the disease is not currently active and no symptoms are present. It does not mean you are cured and it will probably at some point re-flare again. But, remission means hope. Hope gives me a reason to keep fighting and to keep trying.

In the months leading up to my wedding day June 15, 2012, I was having symptoms every 7-10 days. In my opinion, that seemed great compared to everyday. In May 2012, I switched GI doctors. My new GI doctor told me that if my drugs were properly working, I should be able to go at least 3-4 months without symptoms. This was not happening-I was no where close.

The one thing I was worried about the most as the days approached my wedding date was having a flare. What if I was about to walk down the aisle and needed to spend 30 min to an hour in the restroom. What if I couldn’t make it through the reception and dance at my wedding? Thankfully, this did not happen. I believe it was God’s gift to me on my wedding day. It was the most calm, beautiful and perfect day ever. It was exactly everything I had hoped it would be and more. I felt so loved and blessed by my husband, friends and family. Crohn’s can take a lot of time and things in my life, but it did not take my wedding day. I simply wouldn’t let it. It was perfect J

 I only had a few problems on our honeymoon to Riviera Maya, Mexico. I did pretty well with eating the resort food and overcoming a very tramatic accident with my husband losing part of his finger! The stress during that horrible week did not impact my Crohn’s as much as I thought it would have. But when we got home…that’s a different story.

I will post a separate blog later on traveling with Crohn’s and the story of our honeymoon and how we spent two days in a Mexican hospital!  So check back!

A couple weeks after returning from our honeymoon, I began having a flare that has not ended yet. It has been over a month now of being in the midst of a flare. It’s miserable. Very tired all the time. A couple weeks ago, I tried a steroid pack again, but this time it did not do the job. No quick fix. So, I decided I would go back on Prednisone at a lower dosage.

My doctor and I decided to try out a new drug called Cimzia. She said it is better to aggressively treat my Crohn’s since I am young. Also, this is the best and safest aggressive drug for me to be on when I decide I want to have babies. (which is not any time soon J)

I am currently waiting for my insurance to approve Cimzia. It has been 2 weeks so far. It is taking forever! I want to start the drug so that I can get off of on Prednisone. Hurry up insurance! I also have a love/hate relationship with insurance as well.

In this blog, I want to share my journey about living with an autoimmune disease while learning to be married as well. As if marriage doesn’t come with enough adjustments! J