I have Crohn’s disease. I was diagnosed 14 years ago. I suffered for years with stomach pain that got increasingly worse year after year until figuring out what was wrong with me. It was a relief to finally get an explanation for the crippling stomach pains I suffered regardless of what I ate. I went through all sorts of tests thinking at first maybe it was some sort of allergy, lactose intolerance, celiac disease, Colitis and then finally an x-ray showed Crohn’s. I had no idea what that even meant and when the specialist told me the diagnosis, he warned me to take everything he knew I was going to read on the internet with a grain of salt and not get overwhelmed. Wow, was I in for an eye opener of what I was actually dealing with, the most daunting fact being that it was chronic and that there was no cure. I would live with this disease for the rest of my life. At that time, the news felt sort of like a death sentence because I was so sick and had been for so long. I had no idea how I was going to live my life with this horrible disease and all its symptoms.
Immediately after being diagnosed, I was put on antibiotics and steroids. I was told steroids were the most common treatment option and for most people they were successful. For the first time in years I felt hopeful that I might actually start to feel better, get through a meal without having to leave the table keeled over in pain minutes in. The first few days I felt amazing! The antibiotics did that. Then came all the side effects of being on the steroids. I had every single one and they never actually even helped me to feel better at all. I ended up with a huge infection and in the hospital for 5 days with a tube in my gut. After suffering through so much for years I opted for surgery to have the diseased section of my small intestine removed. This is/was not a cure but definitely gave me back my life! It was so amazing to feel well again, I had completely forgotten what it felt like to be me! It was awesome. I was on a mild medication still throughout this time that I ended up stopping after a couple of years as it ended up making me feel worse.
Five years medication free and I thought I was in the clear, one of the lucky few who would never see the disease return. I began to notice symptoms here and there but instead of acknowledging, I ignored them in hopes that they’d go away, that they weren’t significant or meaning I was coming down with another flare. I had symptoms I had never had before, in my eyes was the biggest one. I had never had issues with my eyes before but was constantly battling infection and injury to my retina. Crohn’s has the ability to manifest itself elsewhere in the body at times, a total systemic attack! My stomach wasn’t acting up but my eyes were taking the brunt of inflammation in my body. That went on for a year or so then the stomach symptoms started again, no where near as bad as before so I thought maybe I could just mind over matter it. Bad idea. I didn’t even tell my doctor because I was terrified of the tests, he’d send me for and of being put back on the steroids!
Finally, 6 years after my first surgery I had to admit that something was wrong. I had another infection and spent 10 days in the hospital this time. After that my doctor put me on a new medication that is a long-term immunosuppressant which I am still on today. It helped a lot, I had to be on the steroids again for a short time but dealt with it better knowing that I was going to be on this other medication that worked well for most people. I also went into this flare a lot healthier than the previous which I think helped as well. The medication worked quite well, I felt better in most aspects relatively soon after starting it. Unfortunately, I had some scar tissue build up which led to another surgery to remove another, smaller portion of my small intestine that was blocked from old disease, but no active disease was found! For the first time in years I was finally in full remission.
It’s been 6 years since that surgery and I’ve been doing good for the most part. I battled with low iron for the past couple years due to some unnoticed blood loss over a lengthy period but finally have that in check now too.
Dealing with this disease has taught me a lot. It has taught me that I am strong and resilient. I have quite often been able to keep a somewhat positive attitude throughout the worst times remembering that so many people have it so much worse than I do. I’m grateful for the path I have travelled. For now, I am healthy and the disease doesn’t really factor into my daily life that much. I should probably take better care of myself than I do but to be honest, I’m lazy! 2019 is a year where I plan to focus more on my health and make better choices for my body. I sure don’t want to end up back where I was years ago because I let myself slide too many times!