If you’re reading this blog then I’m guessing that you know what it’s like to live with a chronic disease or at the very least you know someone who lives with a disease. Going about your day-to-day life with a condition like Inflammatory bowel disease can be daunting. Everyday starts with a question mark, everyday you have to wonder how you’re going to feel and everyday you aren’t sure if a flare is going to hit.
Since I’ve started working as an advocate for those with Crohn’s disease and ulcerative colitis, I’ve noticed how little people know about these diseases, how treatments actually work or even what’s going on sometimes. A big problem is that both of the IBD’s aren’t a priority on the list of diseases which need cures now. Cancer, Aids, diabetes and so many other conditions come well before Crohn’s disease or colitis ulcerative. This has led the medical community to know more about many other diseases, but not that much about IBD.
The reason for me writing this post is because I’m sitting in my hospital bed, and I can legitimately say that the nurses, residents and doctors aren’t sure about what’s going on right now. They all start sentences with “What I think might be happening” and then the conversation goes from there. Now I know that I have a complicated case. When I tell people that I’ve had over thirty surgeries, they are amazed.
This trip in particular is more confusing than others. Mainly because my body is acting in many ways that doesn’t make sense. A good example right now, is that the last three days I’ve hardly had to empty my ostomy. I’ve had a ton of soup, crackers and have had as much water as I can, yet my stoma is still not very active. Why is this the case, we don’t know, but we all have our guesses. Maybe it’s the pain medications slowing me down, maybe it’s the steroids allowing me to take in more liquids or maybe it’s my body just being weird. Usually I empty my ostomy about 7-10 times a day when it’s relatively full. Here I’ve emptied about a total of 7-10 times over three days, and when I do empty it’s not anywhere near full, just a few tablespoons at most.
So why is this happening? We don’t know. I received a cat scan yesterday and it came back negative. The resident even said that the amount of inflammation in my stomach is that of a normal person. Even got news that a 4 inch area of my small intestine which was bad in March, might have healed. Hearing words like that from a doctors mouth is like music to a patients ear. Yet if they don’t know what’s going on right now, how can I trust that what they are telling me about my intestines healing is the truth. That four-inch section which almost led me to another surgery in March is better and the other areas of my small intestine look better too. Then why do I still have so much pain, nausea and other symptoms these last few days?
No one knows what’s going on with an IBD and the scary part is that no one will likely know anytime to soon. Taking care of IBD isn’t a science, it’s an art mixed with luck as well. Crohn’s and colitis will continue to have case after case which is worthy of being on a medical drama show. Sadly I know to many people who would qualify for a leading role as well.
We need to find ways to get more funding, this way we can learn more about these diseases. The only way to do that is to raise awareness first so not only do people with IBD know about these diseases, not only do their family/friends know about them, we need to find ways that everyone knows about them. When that happens we will no longer hear about all of these confusing cases. We’ll hear more about the mysteries that were solved and stories of successful treatment. Then we’ll hear less about the cases that being with the sentence “We think that is what might be happening”.
Never Stay Quiet!