Today is world IBD day…a day to educate one another about the different types of inflammatory bowel diseases. I stopped to think about what world IBD day really means to me. Some of the words that came to mind were brave, purple, strong, support, steps, courage, fear, strength, pain, and awareness. What I write, the world might read. Words are powerful. The day I was diagnosed-with just one word, my world changed. Colitis. I’m going to do my best to get through this blog post without a tear today-and so far so good.
What I believe a few of my IBD friends would want me to say…we are strong. Mentally and physically we’re fighting all the time. We’re fighting to make it through the day, and in a way we’re magicians too. We hide the problems so no one else can see. We pretend most of the time that everything is ok-when really we are counting down the hours until it’s an acceptable time to crawl back into bed. In fact, most days-my biggest accomplishment might be staying awake all day long (usually this doesn’t happen-which is why it’s an accomplishment).
We take pills, and meds and more pills until we’re blown up on prednisone. This is the reality of an IBD patient. Since no one knows what causes it–truly–and everyone’s body is unique, there isn’t one clear cut way to manage IBD patients. So typically, I’ve found, doctors treat the symptoms instead of the disease (but not before giving Apriso and Lialda whirl). You’re bleeding-try Prednisone. You’re tired-take iron. You’re nauseas-take Zofran. You’re in pain…now wait a minute…how much pain..on a scale of 1-10. Ok, so my answer is usually 7/8…because in my opinion there’s what we call “tolerable” and “intolerable pain.” IBD patients know, pain is inevitable –it just is. Therefore, if we’re in pain and we’re actively seeking out help it’s for a reason. If we had a slight pain, we’d be out doing something we enjoy. Ok, so the pain is a 7…take Hydrocodone or Dilaudid. Your back hurts… try Lidocaine patches. Things still aren’t going well…let’s try 6MP..it’s a chemo pill but it’ll be ok. All the while, we keep swallowing pills and trying to keep the symptoms at bay. Have you ever met those people who say, “I don’t like to take pills”–and you think…they don’t know how bad a pill is until they’ve tried to swallow a potassium pill. Those potassium pills are no joke! We’ve also met those people who cringe at the sight of blood or getting an IV put in…and again we think…they don’t know pain until they’ve had to have potassium intravenously pumped into them (which burns like fire in your veins). Oh and by the way, I’ve had/used all of the above. So you can’t sleep because you’re up going to the bathroom in conjunction with the Prednisone that (had I known in college keeps you awake-I might have been able to pull an all nighter better–kidding mom)…but seriously…Prednisone is the devil in pill form. It keeps you wired…so…try Ambien they say–it’ll help they said. HA! If I had a dollar for every time a doctor told me to try something, I’d have enough money to have a lab created colon made. I could go on for days, the point is…IBD is hard. They can pump all these miscellaneous drugs into our veins but at the end of the day–we’re stuck. We’re at the mercy of all these doctors and specialists. At times, it feels like the blind leading the blind. Oh…you’re also feeling sad/miserable/depressed because you have a disease that you didn’t plan for and you’re life now revolves around where the closest bathroom is…take Zoloft, Lexipro or Wellbutrin (dealer’s choice really). If you think I’m utilizing humor mixed with a side of sarcasm to lighten this blog up–you’re right. The funniest things are true…and I am by no means even stretching the truth.
Awareness is crucial to the success of discovering a cure. One day, one step at a time we’re all trying to help solve what seems unsolvable. Through support groups I’ve made friends, we all have similar symptoms have taken similar drugs and understand the affects–but we’re all different and we don’t understand how this happened to us. All diagnosed before the age of 30 with different backgrounds, different genetic makeup, yet we all have one thing in common-IBD.