Today is World IBD Day! A day created to bring awareness to a disease that has a lot of stigma. Most people have only heard of Inflammatory Bowel Disease thanks to the awful commercials on TV promoting medications for the disease. But IBD is so much more than what the commercials show. Over 1.6 million people in America have either Ulcerative Colitis of Crohn’s Disease and over 30,000 people are newly diagnosed every year. You probably know people with this disease and don’t even know it!
So, what is IBD?
IBD is constant anxiety about when and where you’re going to have to go to the bathroom. It’s cancelling plans because you’ve had to go too many times that day and you’re worried about trying to find a bathroom during that outdoor concert. It’s walking into a store and immediately wondering where a bathroom is, just incase. It’s when someone walks in to the public restroom while you’re going and being mortified that maybe they heard you and are judging you for going in a public place. Some days it’s having to go 25+ times.
But it’s also more than that.
IBD is having a flair in the winter and waking up with arthritis in your feet so bad that getting up and around takes way longer than it should. It’s having skin so dry it cracks and bleeds. It’s having minute needle marks all over the inside of your arm and scars that you don’t want anyone to see. It’s stomach cramps so bad it feels like someone forced you to eat a hot iron. It’s 3am hospital visits. It’s trying not the scream on the toilet from your fissures or hemorrhoids.
Sometimes, IBD is going to the bathroom and wondering who put the shark in the toilet… how can you lose that much blood? It’s the sleepless nights because you couldn’t stop going or because the pain was too much. It’s an insistent brain fog because you’re dehydrated or anemic.
Sometimes it’s being an expert on colonoscopies because you’ve had so many you lost track. Sometimes it’s MRIs and drinking the thick plastic concoction when you’re body is protesting. Sometimes it’s your GI Doc asking you if you want a cork because it’s day 42 in the hospital and you just want to go home.
Sometimes it’s a complete stranger telling you that if you just changed your diet to vegan or paleo or just cut down on the sugar then you would be cured. They recommend essential oils, colloidal silver, and everything else under the sun.
Simetimes it’s remission. Remission of the disease thanks to dangerous and strong medications. Steroids and biologics. Moonface and weight gain. Or outpatient hospital visits every 8 weeks to get your remicaid. Sometimes it’s taking 50 pills a day, you and your doctors hoping they work this time.
Sometimes it’s surgery. Removing intestines. Creating reservoirs out of intestines. Or an Ostomy. Having a bag hidden beneath your pants, no control over when you go. Waking up in the morning very rested until you realize you rolled over on your stomach and your bag burst all over your bed and yourself. Or it’s wondering when your next intestinal obstruction will be and when it happens you do everything possible to make it pass because you don’t think you can take another NG tube.
Sometimes it’s being so weak you decide to sit down in the shower. And then you’re so weak you can’t figure out how to stand up again. But you do.
Sometimes IBD is little victories. Days when you are so glad you’ve only gone 4 times, when you slept through the night for the first time in months. Private bathrooms in public spaces. Finding medicines that work and doctors who can help. It’s sympathetic friends and unrelenting supporters. It’s trying new foods and getting out of the house. It’s fighting, one day at a time, for a cure.