For many patients, the initial diagnosis of inflammatory bowel disease (IBD) is a long, drawn-out process. For others, the diagnosis can be quick. It took about a month and a half to get my diagnosis, and I consider that to be a short time. It wasn’t easy, however.
The first doctor I saw was my general physician. I told her I was having diarrhea and seeing blood in my stool. She didn’t seem concerned. She waved it off and told me it was probably bacterial, then sent me home with some antibiotics and a stool sample collection kit. Then she said, “Come back if things don’t get better.”
Things didn’t get better for me. So, two weeks later I went back to my general physician with my bloody stool sample. Not only did I feel horrible, I was treated badly by the nurses in the office. They made a horribly big deal about my stool sample right there in front of me and another patient.
When my doctor realized how much blood I was passing, she sent me to have an emergency colonoscopy the next day. I was scared. I was “too young” for that sort of thing, right? And why the heck were they taking so many blood samples? I remember writing on my Facebook page that if I had to be stuck with a needle again, I was going to scream.
And I was stuck again. I counted 9 times in 5 days. That didn’t even include the blood transfusion I had to have.
After my colonoscopy, the GI told me that I either had Crohn’s disease or ulcerative colitis, and I would have my diagnosis within 7 days. Eventually, my diagnosis was ulcerative colitis. In the meantime, I was put on prednisone to help ease the symptoms. I could tell almost immediately that I was going to hate taking prednisone. Sure, it helps knock out some symptoms quickly, but it causes a plethora of additional problems.
But things still didn’t get better for me. So I called the GI. I called her several times. I remember during one phone conversation, she told me that I would never feel “normal” again and that I could expect regular bloody stools. Looking back, she was right. I never had a normal bowel movement again. But the fact that she really didn’t seem interested in truly helping me or explaining my disease to me didn’t encourage confidence. At the end of one conversation, she actually told me that in two years’ time, I would know more about my disease than she did.
My husband (then boyfriend), Dave, and his family were the most helpful throughout my diagnosis and search for answers and relief. Dave’s mother found a lot of information online about ulcerative colitis. She told me there were many treatments available and that she’d also read that surgery “cured” the disease. I would eventually come to find that surgery wasn’t really a cure at all because you can’t cure an autoimmune disease. Ulcerative colitis is, unfortunately, wired into your genes, which cannot be changed. Surgery only removes the main target of the disease.
Another thing Dave’s family found was a doctor who specialized in IBD, located just down the street from where I worked. I was hesitant to switch doctors. I wondered if I was going to have to be poked and prodded again. I had to wait two weeks to see the doctor due to the number of patients he was seeing, so I was able to get my medical records from the first GI.
Dave went with me to see the second opinion doctor. I didn’t have much hope, so my expectations were low. I was, however, pleasantly surprised. While the doctor did suggest that I opt for surgery because of the 94%-95% success rate, he was also very knowledgeable about the disease itself.
He asked if I’d done a stool sample. He told me that oftentimes when doctors order stool samples to check for a bacterial infection called Clostridium difficile, many of them only test once. He told me that he had one patient whose C. difficile test results came back negative twice before a third test came back to confirm his suspicions. After he diagnosed his patient with C. difficile infection, he was able to get the patient on the road to remission. Because of this, he always tests 3 times.
He also prescribed two other medications. He told me that when he prescribed these medications in combination with the ones I was already taking, people came back hugging him in tears and thanking him for the relief they found.
I had new hope.
I was finally diagnosed with C. difficile (which was the reason the bleeding wasn’t stopping) and after getting that under control and starting my new medications, I achieved remission from ulcerative colitis as well as the infection.
So, all this to tell you—if you are unhappy with your doctor’s answers, if the experience didn’t leave you feeling confident in the treatment or the future, or if you’re just not “clicking,” I would encourage you to get a second opinion. Better yet, get a third. You’ll probably be pleasantly surprised and thankful. I know I was.