It was May 2011 and I was suddenly sick with the diarrhea, no big deal right? So I let this go on until the end of June before I decided that it was time to see a doctor. I originally thought that I had just caught the flu, but after almost a month of dealing with this I thought it was time to be checked out and I had this gut feeling something wasn’t right. I mean when you are at a local store shopping with your brand new boyfriend, who turns out to be my hubby now, and you suddenly have to go to the bathroom so bad you are sprinting through the store unsure if you will make it in time. That should be a trigger for anyone to realize something is WAY wrong in your body.
I made my way to my primary physician’s office where they took labs and stool samples. A week later I received a phone call saying that I had a really high white blood cell count which meant that I had a possible infection that was leading to the inflammation. They prescribed me with an antibiotic and said that this would help in a couple days to get rid of whatever was going on in my body. Which because I was young I did not ask more questions like what kind of infection, and I should have. I just began to take the antibiotic and after my prescription was done I had no relief of my symptoms.
Back to the doctor I went, and this time they thought maybe I was lactose intolerant. So they told me that for a month I should avoid ALL dairy products. I followed the instructions and went dairy free, and let me tell you this was the most difficult thing since I love my dairy being from Wisconsin and all! I mean who doesn’t love a good ‘ol Wisconsin cheese curd?! Anyway in the end this did not give me any relief either, the primary doctor thought that I could have something more serious wrong, and this is the first time Crohn’s disease came to light in our conversations, which I do have a family history of, with two aunts being diagnosed with.
Like most people I am sure feel it was scary not knowing what was going on and that no one had any idea what was wrong with me. It was test after test and finally I was referred to a Gastroenterology office, which felt like a step forward. They began repeating tests and running new test. In August 2011 the doctors decided I would need a colonoscopy because this would be more conclusive. Little did we know that there would be no evidence of Crohn’s in my body from what they could see (the can only see your colon and large intestines in a colonoscopy).
We went back to tests and I had a blood panel done that was compared to people who had been diagnosed with Crohn’s and those who did not. The results said that I had markers that indicated I did have Crohn’s, the only problem is that this test is not really a good thing to go by because it could be wrong. So here I sat getting even more frustrated because did I or did I not have this disease?? Either way, the doctors decided it was best to begin to treat me with medications as though I was a Crohn’s patient. I was put on prednisone which gave me the worst joint pain that I ever had felt! I was 19 and felt like that of a 90 year old and I could hardly walk up the stairs and all I wanted to do was lay on the couch. So they weaned me off because I felt worse than I had before, and put me on a different medication. This medication I thought was helping.
Over the weeks, I began to experience terrible abdominal pain and still was dealing with the diarrhea. I was doubled over in pain, and couldn’t even go out in public because I had to literally run through stores to get to the bathroom because if I didn’t I would have to go in my pants. I returned to the doctor telling him that there is no relief of my symptoms. They then told me that there was nothing else they could do for me, and that I would just have to ice my joints! Like what?!?! I was devastated by him telling me this and I felt hopeless. Was this going to be how my life was? I cried that whole car ride home….
After getting home, my parents reassured me that it was going to be okay and that there were lots of other places that we could go to and if need be they would even take me somewhere out of state (thankfully it never came to that). All the local physicians were booked until the end of October, and it was only just September. A whole month of that pain was out of the question! I ended up being able to get an appointment at a hospital that was more of a drive but it was what I had been waiting for, a doctor who was willing to listen and work with me to get things to where they needed to be.
He first tried me on a different version of a previous medication I was on, and it did not work. After a few months of trying different things he said he would have to either put me on a very expensive steroid or have a colonoscopy to better understand what is going on. I left there not making a decision, but when we got to the pharmacy to see the cost of the steroid, I received my answer from the universe that I needed to have the colonoscopy.
In January 2012, I underwent my second colonoscopy and this was when it was confirmed that I did have Crohn’s disease. They found it present at the very end of my small intestines. I finally had an answer and it was a relief that I now knew what I had. We could switch our focus on my treatment, and I ended up on Humira because I did not want to go once a month and receive three hour long infusions. Humira was the answer for me for almost six years…until it wasn’t.
If you have gone through this you know how frustrating of a process it can be. I have heard others wait a lot longer than I did to find their answers, which is so sad to think about because of that sense of helplessness you feel. If you are going through this right now, keep fighting for answers and lean on those that are there to support you through the process. Stay strong warriors!
XOXO ~ Brooke
*Disclaimer: Always consult with a professional medical practitioner before taking any dietary supplements or recommendations listed, especially if pregnant, nursing, taking prescription medications or under a doctor’s medical care.
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