One Month. One Charity. So Much Support!
A month ago I woke up from a colonoscopy/endoscopy and was told by my doctor that I have Ulcerative Colitis. I think I was more upset at the fact that I needed to get blood work done before I could go to the diner, considering how I was just out cold for an hour and would have much preferred to get the needle then (and had been dreaming about pork roll since my colonoscopy prep!). My parents were thrilled it wasn’t cancer; as my anesthesia wore off the weight of my diagnosis continued to sink in. I was sick, and I always would be.
I was put on prednisone to help get my intestines back to normal, and I am so excited to be almost halfway through weaning off of it considering I haven’t taken a breath since! I’m sure my parents are looking forward to a quieter house in a month as well. I am certainly looking forward to a good night’s sleep.
The stomach pain is creeping up on me again, so between that and the numbing cream I was prescribed I am looking forward to my second infusion of Entyvio on Monday. I want to fight; I want to get better. There’s simply no other option.
Before my follow-up on the ninth, I was watching TV with my Mom and saw a commercial for a drug that seemed like a good option for me-- until we saw the print at the bottom saying something like “given intravenously through IV infusions.” I said nope. Needles? Yeah no, not for me. There’s got to be another way.
At my follow-up I was told that the only “cure” for what I have is surgery. Even then, my immune system could continue to attack. Managing Ulcerative Colitis through medication was the best route. My options were presented in such a way that getting infusions of Entyvio stood out as the best option. I could continue it during future pregnancies, it’s stronger than oral medication, and I wouldn’t have to give myself needles (which, let’s face it, was not going to happen at this point in my life. I admire anyone with the strength to do those sorts of treatments). I didn’t want to, but I agreed. Then, I was told I needed to sign a consent form. Seriously? Isn’t verbally agreeing to a life of needles enough? I definitely felt like John Proctor. The day seemed to just get worse. But I signed. (I asked if my Mom could sign but since I’m over 18 I had to put on my big girl panties do what I had to do.)
I told my Mom there comes a point where you have to do what you need, not what you want.
That’s the thing about being diagnosed with a chronic illness at age 20—you automatically grow up a bit (if you don’t include the variety of puns and bathroom humor we’ve used at home to help us through this). Not, of course, before going through a plethora of emotions. I was angry. I was devastated. I felt guilty because, like everyone said, my diagnosis could have been worse. I felt cheated, because while yes it could be worse this diagnoses certainly wasn’t a walk in the park. What quality of life would I have? Was it worth living? Would I be selfish to have my own kids one day? A range of emotions heightened by steroids and even hormones made for one roller coaster of a month. But it’s ok—you’re allowed to not be ok at times.
What’s incredible to look back on this first month of being diagnosed is all the good that has come from it. We don’t know why certain things happen to us, but I truly feel God pushed me into a communication major so I could start The Princess Promise.
Since starting The Princess Promise a couple weeks into my diagnosis (the lovely combination of Jesus and prednisone has made me ill-equipped to simply sitting and moping), I have had an outpouring of love and support. I hadn’t realized how many people were affected by IBD in some way, and I am so blessed to have founded a platform that can offer support and encouragement. The Princess Promise was started not only as a team for the Take Steps Walk in May but also as a way to show women with IBD that no matter our symptoms, we are still princesses. I am thrilled by how much it has grown in a couple weeks, and I am so excited for our future.
My parents laugh at me because I complained, “This is such an unattractive disease!” because they are apparently no attractive diseases. The Princess Promise aims to get rid of the “stinky stigma” around IBD, as my Mom likes to say. It can mess with your head when you are a 20 year old woman missing a family post-Christmas brunch because you are prepping for a colonoscopy and don’t want to risk the temptation of good food. It makes you feel like less of a woman when people ask what made you know something was wrong and you say, “Well, I’ve had diarrhea for a couple months.” And it DEFINITELY embarrasses you when you are proud to show off your colonoscopy pictures to your boyfriend until afterwards when you look up what proctitus means (I’ll let you Google that on your own—but don’t image search it!).
Growing up, being a princess meant wearing the beautiful ball gown, getting swept off your feet by a prince who saves you with true love’s first kiss, and living “happily ever after”. Thankfully, IBD and happily ever after are not mutually exclusive. Now, being a princess means so much more. One similarity between IBD and being a princess is that everyone’s experience with IBD is so unique, as unique as the princesses who have such diseases. What a princess means to me can be completely different than what a princess means to you—and that’s beautiful. For all I know, Cinderella may find comfort in bringing her glass slipper to her infusions while Merida may want her bow and arrow. As for me, I hope to eventually bring my Miss Magnolia tiara. It’s important to not only stay positive but stay true to yourself on your journey with IBD, so whether you wear your softball uniform or your pointe shoes to your treatments more power to you! Princesses, like cases of IBD, come in all shapes and sizes.
A month into this and I am looking forward to a hopeful remission and continuing to build The Princess Promise. I am so grateful for all of the advice, support, prayers, and love I’ve received along the way. A princess has got to do what a princess has got to do. My duty as a princess with IBD (see what I did there?) may be unpredictable, but I am excited to turn this into something positive. Here’s to all the princesses out there with IBD and their loving courts!
Interested in helping The Princess Promise reach our goal for the Take Steps Walk? Check out our fundraising page here:
Online.ccfa.org/goto/princesspromise