May 19 is World IBD (Inflammatory Bowel Disease) Day. It is an annual event to raise awareness of Crohn’s and Ulcerative Colitis, which both cause inflammation and ulcers in the digestive tract. These diseases are ‘crap’py literally and figuratively.
Basically, I woke up one day and my immune system looked at my colon and said “I don’t like you anymore, wanna go at it?” and they have been fighting ever since.
It has been an interesting journey as I approach the four-year mark this summer. I was diagnosed after a terrible flare-up, being extremely bloated and in constant pain. I was put on high doses of steroids for six weeks and two different, but equally disgusting, antibiotics. The flare-up took about three months to get under control. I never knew I could be in so much pain and so tired constantly.
The pictures from my first colonoscopy contributed to the diagnosis of severe Crohn’s Colitis, which was affecting about 80 percent of my colon. It really made me wonder how I was even functioning the way it looked.
Food became the enemy. Just about anything I tried to eat or drink would just make me hurt. Smoothies, eggs, and potatoes were really the only things I could handle for a period of time. I quickly learned I could no longer drink soda or anything carbonated. Raw onions were definitely out of the meal plan for good, as well as nuts, seeds, and popcorn. Anything remotely spicy had to be deleted from my food intake, including mild salsa.
When I learned I had become lactose intolerant I was crushed. I love ice cream, milkshakes, and a nice cold glass of whole milk. My digestive tract couldn’t even handle a glass of milk. At least I learned I could handle lactose-free milk...two percent, real cheese, and tiny portions of sour cream and cottage cheese.
Nearly two years ago now, my follow-up colonoscopy showed I was in remission. The difference in pictures from the first time was like night and day. I didn’t think it was even possible to heal the extensive damage. I’m able to eat pretty normally now, even some ice cream. Some things still get to me, but it’s mild pain compared to what it was in the beginning.
The fatigue and other issues stemming from this disease never go away. When they say health starts in your gut, they aren’t lying. Crohn’s affects the entire GI tract.
My throat and eyes are constantly dried out. I can’t even wear contacts anymore. My teeth turned to swiss cheese with all the cavities I’ve had since my diagnosis. I think I had three cavities my entire life until four years ago. Now I’m lucky to leave the dentist’s office without at least one cavity. This is also “fun” when you constantly have a sore in your mouth.
The joint pain is terrible. Even my allergies have worsened. Not to mention the never-ending acne I have tried everything to keep under control, including the dermatologist giving me medicine that can cause a bad reaction. Even my hair has thinned horribly between the disease and the infusion medication used to treat the disease. And, of course, there’s always the frequent bathroom trips.
Crohn’s is a very painful disease. The Crohn’s & Colitis Foundation estimates that two-thirds to three-quarters of those with Crohn’s disease will have one or more operations in the course of their lifetime. About 30 percent of surgical patients will have a flare-up within three years, and 80 percent will have one within 20 years.
I, thankfully, haven’t had surgery yet. But honestly, it’s only a matter of time. Those with IBD are more likely to have particular chronic health conditions, compared to those without IBD. These include cardiovascular disease, respiratory disease, cancer, arthritis, kidney disease, liver disease, and, of course, colorectal cancer in particular.
There is no cure, only life-long treatment. While I’ve had mostly good days, the bad days are debilitating. Thankfully, they don’t happen too often.
Here’s hoping for better treatments that will lead to a cure. From this Crohnie to my fellow IBD sufferers, hang in there. You are not alone. I’d say let’s party, but we would just end up fighting over the bathroom anyway.