Tuesday, December 3, 2013

{Crohn's Awareness} :: My Diagnosis

So now that you have a basic understanding of what Crohn's Disease is, I can share a little of my own story of being diagnosed with Crohn's Disease.

I often say that I chose the most expensive way to gain my diagnosis. But I was so thankful for answers at the time that it {almost} didn't matter.

I had battled intestinal issues for about 2 years. It actually seemed to start when I became sick on a mission trip to Nicaragua {possible that a virus or bacterium can trigger Crohn's Disease??} I can't say for certain that is the starting point or "trigger," I just know that it is what started my journey of trying to identify what was going on with my insides. I do know that whether it was related or not, my intestines have never really been the same since then.

Fastforward a bit...at the beginning of 2012, I started to have bouts of intense pain in my abdomen. It would last for 2-3 days, but then it would go away. This happened on and off for several months, until it started to become more frequent, and my husband finally forced me to go see a doctor. I have a family history of gallbladder disease, and so I assumed that was what I would be diagnosed with. I went to a doctor of Internal Medicine, who did a sonogram and an upper GI. The results? I was diagnosed with H. Pylori. {Hello another random medical thing I had never heard of...}

H. Pylori is a bacteria that can cause ulcers. 50% of the world's population has this bacteria in their stomach, but most never experience any symptoms. If the bacteria causes infection, it can cause gastritis symptoms. I was put on 2 weeks of intense antibiotic treatment, and ultimately declared H. Pylori-free. I figured it was something I contracted in Nicaragua, and was just glad to move on.

Hospital Stay
Except that my bouts of abdominal pain didn't end with the eradication of H. Pylori. Instead, they worsened. I was referred to a GI specialist and had appointments scheduled, but I never made it to them. I had a really bad attack, the longest and most severe I had experienced, which landed me in the hospital. There, I was able to have a CT scan, an upper endoscopy, and a colonoscopy {in the ER...so the most expensive way to diagnose. Sigh}. That's when the doctor started saying that things were looking suspicious for Crohn's disease. My ileum was incredibly inflamed, which was making things difficult to pass through my intestines. My GI doctor sent off my blood for testing, and I received the official diagnosis a few weeks later.

The particular type of Crohn's Disease that I have is known as Crohn's Ileitis. This type affects the ileum {the end of the small intestines}. Without proper treatment, I am at risk of developing fistulas, or inflammatory abscesses, in the lower section of my abdomen {fun, right?}

I was put on an antibiotic and steroid regimine, and I was also placed on a low-residue diet. It was the initial treatment to get the inflammation down, but I would make decisions about long-term treatment in the weeks to come.

It was certainly a scary time. While I was relieved to have answers, I was nervous about what it all meant. I had more than my fair share of questions and concerns. I mean, anything with the word "disease" makes you stop in your tracks. Especially when you learn that it's a disease they don't know much about and at present does not have a cure. If I am honest, I am still nervous about what it all means and what complications I could face in the future.

I have spent the last year researching and learning, doing the best I can to get a better understanding of my disease and how to manage it. I still have a lot to learn, but I am thankful for the circumstances surrounding my diagnosis. I have to remind myself of the blessing of living in a time and place where modern medicine allows diagnosis and managed treatment. I often find myself thinking of and praying for those who are suffering but don't have access to diagnosis and treatment.


  1. You're right - getting a "disease diagnosis" is scary. When I was diagnosed (or started having symptoms) of Sjogren's and Rheumatoid arthritis, I was deeply depressed for about a year. A quote that helped me was, "I may have (insert disease here), but the disease doesn't have me." It doesn't have to quench your spirit. It doesn't have to quench your joy. Even Paul had a "thorn in the flesh," and he was one of the greatest Christians. God put you where you are to be a blessing to others - as you are to me! Know you always have a "diseased" friend close by that understands. :)

    1. Thanks Lauren; it is incredibly comforting to know that I have a "diseased" friend that understands so close :) And thank you for the reminder of Paul's thorn in the flesh!