Q: What is your biggest inspiration?
A: Right now, all the other incredible ostomates I’ve been able to follow on Instagram are my greatest source of inspiration. The ostomy/stoma community is so amazing and welcoming and positive. I love seeing all the “Bag? What Bag?” posts. They’ve all inspired me to be more open and vocal about my ostomy. I never used to like pictures of myself, but now with my bag, I take them all the time! I finally have confidence, as strange as that may seem!
Q: Who is the person (or people) who has gotten you through the most?
A: My mom. Hands down, my mom. She is incredible. She stayed with me through every single hospital visit, sometimes driving two and a half hours down to the DC area when I was in grad school. My mom stayed with me every night while I was recovering in the hospital for a week after my surgery. She slept in a recliner next to my hospital bed. That woman is an actual superhero and she is my best friend, my idol, and my favorite person on this earth. I love her so much and I would not be where I am today without her constant love and support. She is the best mom in the whole wide world (I know, I’m biased), and I am so lucky to be her daughter.
Q: While you have been going through this time in your life, what has been the most unexpected and rewarding thing you have experienced?
A: Self-confidence! I had no clue that getting this bag would boost my confidence so much. I have the option to have two more surgeries to form a j-pouch and have my ostomy reversed, but I am feeling so incredible and am finally healthy and happy that I have decided to put off the next surgeries, maybe indefinitely. My ostomy bag is doing what it’s supposed to and I am living my life again! I am happy and confident, even with (and maybe especially with) my new appliance attached to me at all times. I am in awe of what the body can do, and the amount of self-worth I feel now has been so unexpected. The most rewarding thing through all of this is finally learning how to love myself.
Nikki wrote the following about her experience with ostomy surgery:
"Last year I started my first “big girl” job. That’s what I like to refer to my teaching job as – my big girl job. I had survived grad school and obtained my master’s degree in Greek and Latin, and now I had a bright and shiny new job as a Latin teacher to show for it. I was so excited; I was over the moon. After years of constant flares of ulcerative colitis, I had made it through my schooling. After being hospitalized at least once a semester in both undergrad and grad school, I had survived. I had made it. I was a teacher. Finally.
Then, September 2017 happened.
I had just turned twenty-five that July after getting my master’s that May. I had moved to Baltimore by myself in June, to a new city, just me and my husky Eowyn. In September, just four days before the start of my big girl job, my father passed away from a massive stroke. It was, without a doubt, one of the hardest times in my life. The stress of it all did not hit me until much later. I went through the motions - signing the papers to take him off life support (I am an only child and my parents were divorced, so it was my responsibility), planning the funeral, notifying everyone, keeping myself together (well, trying to, at least). I like to be happy – positivity and optimism are traits by which I like to be defined. Who doesn’t? So I tried my best to swallow my sadness. I took no bereavement time at work. I wanted to be busy. I wanted to see my students. I wanted to just get back to normalcy, whatever “normalcy” was now.
Since I was eight years old, I have had ulcerative colitis. UC is a form of IBD (Irritable Bowel Disease) and an autoimmune disease, meaning that it is technically systemic and affects the entire body, but it mainly presents itself in the colon (hence, colitis). Basically, the body thinks that the colon should not be there, so it attacks the organ by opening up lesions, or ulcers, in the tissue, causing intense abdominal pain. The first signs of diseases like UC are usually bleeding when you go to the bathroom and stomach/intestinal pain. I’d been dealing with the unforgiving and un-glamorous symptoms of UC for nearly my entire life. And as a disease exacerbated by stress (stress is a silent killer, as we all know!), the passing of my dad brought it out in full force. On my favorite holiday, Halloween, of last year, my UC flared up like no other flare I had ever experienced.
I was hospitalized five times that school year. The fifth time would prove to be the most terrible, agonizing, transformative, life-changing stay I have ever had, and hopefully will ever have.
From the beginning of April to my eventual surgery date, April 22nd, I had lost 20 pounds. At five foot three, the weight I like to be around is 125 pounds. When my nurse weighed me on the morning of my surgery, I weighed 105 pounds. 105! Like, I don’t think I’ve ever been 105! The UC flare had become so bad that I couldn’t eat anything without excruciating pain. Even cream of wheat, cream of wheat!!, made my insides scream in agony. I couldn’t eat anything and I couldn’t be far from a bathroom. I was running to use the bathroom 15 - 20 times a day. I was pooping 15 - 20 times a day! What kind of life is that? That was no way to live. I was miserable. I was missing so much work. I could see my ribs. My bones were clicking when I walked and I could barely hold myself up. Something had to give.
My doctor said to me, “Nik, I’m not going to lie. You look toxic.” And I did. I looked really, truly awful. I was at Johns Hopkins Hospital in Baltimore, surrounded by the best of the best, being pumped through with high doses of IV steroids, and I was still being told I looked toxic. I knew my life was about to significantly change when she told me that.
Up until that point, I had tried everything. Every medicine, every pill, every biologic. I tried chemo-grade therapy (non-radiative), multiple rounds of steroids, changing my diet, meditating, getting into essential oils, becoming vegetarian, getting a Himalayan salt lamp – literally, everything. Nothing worked. After two years of being on Prednisone, my body was protesting. I should have listened to my body sooner. I should have known that with my family history of colitis and colon cancer, I couldn’t beat UC with pills and infusions.
But I didn’t want a poop bag.
My surgeon came in and said to me, very calmly but very sternly, “Nik, if we do not remove your colon, there is a good chance you won’t see your next birthday (that’s July, if you recall!). And even if you do, even if you do survive, you will almost definitely develop colon cancer. This flare is bad, and your colon is so inflamed that I am afraid it is going to perforate within the next few days. You are too weak, too sick. You will not come back from sepsis.”
Then he said to me something I will never forget.
“Bag or box? How do you want to leave this hospital? With a bag or in a box?”
Immediately, I said box. I was so against an ostomy, so absolutely disgusted by the thought of having a “poop bag,” that I honestly, truly, said I would rather be taken out of the hospital in a box. My mom yelled, my boyfriend yelled, my future step-dad yelled, “She wants the bag!!!” and yet I still screamed and cried and denied the fact that I was so incredibly close to dying. I didn’t want a poop bag. I didn’t want to have what I thought only old people had. I didn’t want to be different or strange or gross.
But going to the bathroom 20 times a day wasn’t normal. Being 105 pounds wasn’t normal. My colon was killing me and I still didn’t want to let it go.
I had emergency surgery to remove my entire colon on Sunday, April 22nd, 2017. I cried the whole way to the operating room. I cried saying goodbye to my mom and boyfriend and future step-dad. I cried once inside the operating room, saying over and over again “please don’t kill me, please don’t kill me.” Then, when I woke up hours later, in the most intense pain I have ever felt in my entire life, I asked myself “Why didn’t they kill me? Why did I live?”
I now know why I lived. I lived because I have so much more to do in my life. I lived because my body fought for me. While I was knocked out by anesthesia, my body fought for me, my doctors fought for me, all while my mind had been so against the idea of it all. My recovery was not glamorous. It was so hard, so incredibly hard. It took me a while to come to terms with the fact that I have an ostomy bag now. But through it all, every day I woke up thinking “oh my god, I am alive and I almost wasn’t!”
My ostomy saved my life.
An ostomy bag is not just something that happens to “old people” and it’s not something to be ashamed of. I am so proud of my ostomy. She (yes, she’s a she and I named her Cleo) saved me from a lifetime of pain, flares, medicine, and chemicals. I can eat again. I can go out with my friends. I never have a fear that I won’t make it to the bathroom in time. I no longer have to cancel plans. I am living my life. I am alive thanks to this small but mighty ostomy. I love my ostomy so much – I really, really do. There are days where I do feel a little bummed, sure, but I am alive to feel that way. I am surrounded by my friends and family and so much love that I cannot even begin to comprehend it all, and it is all thanks to the hardest, toughest decision I have ever had to make. This entire experience changed me physically and mentally, spiritually and in my very soul. I am a different person because of this surgery. I am a better person because of this surgery.
I love my body now, because it is finally healthy. I love seeing my little bag because it reminds me that I am alive. Sometimes, people ask me how I could possibly love my body or be comfortable in my own skin now that I have an ostomy bag. How? Well, honestly, very easily. My body shows resilience. It shows heartache and healing, struggle and triumph. It shows a warrior.
To anyone facing major surgery, ostomy or otherwise, know that you are stronger than you think. You are braver than you could ever imagine, and you are full of so much life still. There is more to see, more to do, more to live through. And you can do it. You can do it, whatever it is. Grow through what you go through. My ostomy surgery taught me true strength and, most importantly, it taught me how to love myself and my body. So what I have a poop bag? Who cares? It has allowed me to be here, to sit down and write this post about my experience and life so far. So far. There is so much more – so much more! And I get to experience it all thanks to my ostomy. If anyone going through ostomy surgery or recovery would like to talk, I am always available no matter the time. Please feel free to reach out to me. I would love to chat! My email is firstname.lastname@example.org, and I am always here to tell you just how strong you are. You are resilient. You are brave.
As I like to say, being brave, sometimes literally, takes guts." - Nikki
- Jessica Musler