Taking Steps: How I found out I had Crohn's

Imagine you wake up and can hardly move because you hurt everywhere. Imagine you wake up and you have soiled yourself in your sleep. Imagine horrible stabbing pains in your stomach all the time. Imagine you get sick immediately after eating, not within a half hour or an hour, but before you finish your plate. These would be a few of the symptoms I suffered through for over two years. I would also get fevers, dizziness, bleeding and loss of appetite.

Since I was young, I had a bad stomach and in fact, I remember eating just plain sandwiches and taking them to school for lunch. Just bread and meat. No toppings or sauces. I started having joint pains and when my mom took me to the doctor they said I might have Juvenile Rheumatoid Arthritis. I even went to the University of Utah to see a specialist and started some occupational therapy exercises to strengthen my hands. All through Middle and High school I thought I had this disease.

As I got older, my stomach issues got worse. The worst part of it all was how it affected my daily life. Over the last two years, I was in the bathroom up to 12 times a day. I was constantly exhausted. My poor children would have to bring me water in the bathroom because I couldn’t leave it. I was constantly late to work because the mornings I was either in horrible joint pain or in the bathroom. I finally couldn’t take it any more. I made an appointment with a Primary Care Physician and also with a Gastroenterologist.

At the appointment with the PCP, it was very quick. He agreed that I should see a Gastroenterologist and took some blood to check on my current Rheumatoid Arthritis factor. When I went to see the Gastroenterologist, I told her all of my symptoms and everything I had been living through, she said, “I am so sorry you have been going through all of that, we can help you.” I started crying, someone believed me and saw that I was suffering even if I didn’t look like it on the outside. I was scheduled for a colonoscopy and endoscopy in December of 2012. Meanwhile, my PCP called back because my thyroid levels had come back low. When I went in to see him, he scheduled me for an ultrasound on my neck and more blood work to measure all of my thyroid hormones. I was diagnosed with hypothyroidism. This was contributing to my fatigue. My PCP also gave me some pain meds because my joint pain was becoming so bad.

After my Colonoscopy and Endoscopy, I was told I most likely had Ulcerative Colitis and put on medication that I take 4 times a day; 8 pills a day. They are ginormous because they have to make it all the way to the end of my digestive system. So much fun, not! Those of you who know me know that I am not very good at taking medicine and especially with swallowing pills.

For the next year, I tried to find my trigger foods and stay healthy and for a few months it looked like I was starting to feel better, but then, I would flare back up. My joint pain was getting worse and worse. I was scheduled for an appointment with a Rheumatologist to see what they could do to help me. After a thorough examination and more blood work, I was told I didn’t have any signs of Arthritis at all. This was a shock to me since I thought I had RA since 8^th grade. When I went back to my GI, she told me that it is common in patients with Crohn’s. Since my symptoms had not been getting better, she scheduled me another Colonoscopy in February of 2014. After this procedure I was diagnosed with Crohn’s. They found ulcers higher up in my digestive system and also a certain kind of marker for it in the walls of my intestines. I was given new medication to add to my growing list of daily meds.

I am glad to have an answer, even if means lots of blood work, meds and procedures. It is not fun and there is not a cure, yet. I am hopeful that they find one soon. There is exciting research in the microbiome field that seems promising. So if anyone needs a colonoscopy buddy, I am your gal! I have to have one done every other year to make sure I am doing ok and because I am at a higher risk of Colon cancer.

Thanks for hanging in there with this blog and don’t forget to make a donation to the Take Steps Walk.