Hey guys! My name is Amanda and one of my biggest passions in life is traveling. Growing up, my family has been my worldwide adventure team; and every year we go on at least one amazing journey together. In college, despite the demanding schedule of studying biological engineering and playing D1 volleyball at Ohio State (Go Bucks), I came to the realization that making time to explore the world was a staple for my happiness (and, really, for success in all areas of my life). That is why, during my last year of school, I decided that my next step would be to play professional volleyball abroad in Europe. I graduated in May of 2014, signed a contract to play in France, and was going to pursue two life goals – to be a professional athlete and to live in another country. I was going to live my passions and everything was going to be great. But that’s when I got very sick.
After having been sick for several months, I was finally correctly diagnosed with Ulcerative Colitis (UC)… and I went downhill… fast. If you don’t know what UC is, you can check out the Cleveland Clinic website here; but basically it is a form of IBD in which your large intestine gets inflamed and develops ulcers (sores or holes). None of the medicine was working and I was getting worse every day. I had to back out of my playing contract with less than a month left before I was supposed to go live my dreams. Barely able to spend more than an hour outside of the bathroom, I was weak, losing weight, rarely sleeping for more than 45 minutes at a time, and hardly able to walk. After a few days in the hospital, the doctor told me that I would need to have my large intestine removed or I would die. After a very tear-filled day of accepting my fate, I was ready. I tried so hard to not need surgery; but it was a much better option than the alternative of dying. The plan was to keep me on IV nutrients to attempt to build up my strength so that I would have a higher likelihood of making it through surgery. However, in the following days, my body went in the opposite direction as hoped. It was shutting down. In those days, I faced the very real possibility that I wouldn’t be alive in a few days. And honestly, thinking about my life, I was ok with that. Why? Because, by the age of 23, I had already experienced a truly amazing life.
You always see these inspirational videos and read these quotes about “living life while you can because life is short” and about “regretting the things you didn’t do more than the things you did do” and all that. You see posts about what people view as important at the end of their lives. I always tried to follow that advice; but I would occasionally get worried that I was trying to do too much or that I should focus more on school or volleyball and less on friends or family or vacations or whatever. But let me tell you… from a person who has gotten the very rare opportunity to face the end of my life and still get to live to tell about the experience: I had zero regrets about living my life that way. I truly was very proud of myself for doing well in school, graduating with an engineering degree from an incredible university, and playing for a successful top-25 volleyball team. I am so happy that I committed to them and worked my butt off for those things. However, the majority of the life-defining memories that came flooding in were the other things. It was surfing in Costa Rica. It was jumping off of cliffs and swimming in waterfalls in Honduras. It was getting stalked by a barracuda in Antigua. It was my family finding ourselves accidentally in between a momma bear and her cubs while hiking in Alaska. It was scuba diving with sharks at the Great Blue Hole in Belize, and it was going on safaris in the Maasai Mara in Kenya. It was doing dumb, adventurous stuff with my parents and brother in general. And it was the late nights that turned into mornings with my unbelievable friends. The amazing relationships I had in my life, the incredible friends, the deep conversations, the random acts of kindness, and even the tears and tough times I had with the people closest to me… all of these things are what made me feel like I had had a fantastically fulfilling life.
But because I was only getting weaker (at 6 feet tall, I was down to only 110 pounds), doctors decided that they needed to schedule the surgery for the next couple days or I would die before the operation. The night before surgery, my body all but shut down. First I passed out walking the 15 feet between the bathroom and my hospital bed. My hospital roommate called the nurse, who helped me to the bathroom AGAIN after taking my blood pressure. I passed out immediately after standing up and taking a couple steps. When she helped me to my feet, I told her I was going to pass out again; so she was helping me back to the floor as I lost consciousness. I remember waking up with a bucket next to me as I was throwing up and the room was filling with nurses and doctors on the night shift. After some time on the floor, two taller nurses helped me to my feet. That’s when I lost my vision. I could feel myself blinking and moving my eyes, but could not see anything. The world was black. Then they said they were going to help walk me back to my bed and asked me to start walking. But I realized then that I could not move or feel either of my legs. They carried me to my bed and laid me down. As they tilted the bed to get more blood to my head, my vision started to return.
Thank God, the next morning, they still went ahead with the surgery. I don’t remember much from that morning except being very ready for whatever happened next. Mentally, emotionally, spiritually, and physically, I was prepared. Mostly I was ready to get that anesthesia so that I could really sleep for more than 45 minutes, be pain-free, and FINALLY not have to go to the bathroom (or at least to not know that I did). Many hours of surgery later, I woke up; and the first thing that I remember saying was “I am soooooooooo happy!!!” Now, it might have partially been the drugs talking; but I seriously had not grasped how much pain I was in until I woke up without it. I felt free. From that instance, I was so grateful that I had had the surgery. But of course, that was just the beginning of a new journey. The good news was that I was a candidate for a J-pouch. Essentially I would have 3 surgeries instead of 1 (I know, this sounds worse instead of better… just wait). The first surgery was to remove my whole large intestine, except for the very end. This was the urgent one, to get the diseased organ out of my body. The second one was to use my small intestine tissue to make a pouch in the shape of a “J” (hence “J-pouch”) inside my body and connect it to the end of my colon. And the last was to reconnect my small intestine with my new pouch. The reason this was so exciting was that after the last surgery I would not need to wear an external “waste-collection” pouch on my stomach for the rest of my life!
One of the main inspirations for me to FINALLY start this blog (I’ve been talking about it for years), was that I recently found my journal from that time. I read through and relived the fear, the helplessness, the uncertainty, and even the shame that I felt before the surgery. Even though I had AMAZING family and friends supporting me, I felt really alone in what I was going through. I was so afraid of what the world would think of me because of my disease, because of my ileostomy bag, because of my scar, because of how very skinny I had gotten, and how I looked overall. I was terrified of being judged and of not knowing how to handle my new life. I was scared that I would never be able to eat normal foods again and that I wouldn’t be strong enough to go on adventures anymore or to continue to play volleyball. Between all of the medication and the fact that my body had almost completely shut down, not only had my body changed drastically, but I could tell my brain wasn’t processing information as quickly either. All of these things lead to some major insecurities. So one of my main goals with this blog is to provide support for anyone going through a digestive disease, any other malady, or really any personal insecurities for whatever reason. I want to share my journey of body positivity and finding confidence in HEALTH (in every aspect of life). I have learned that you are not your body – that your body is just a vessel for YOU; and I think that that idea is important for me to share.
I want to share my story so that people know they are not alone in things that they struggle with, and to provide hope that things can get better. I want to work to destigmatize digestive diseases. In today’s society, it is often rather taboo to talk about bathroom issues or habits. I want people to feel comfortable enough to talk about these topics with me and with others; and I want to be completely real and honest about my experiences.
And lastly, I want to share my passion for exploring and adventuring. I want to encourage people to get out and see the world. I think that if more people would travel the world in order to grow and learn from new and different experiences and cultures, then we would develop a deeper compassion and respect for people from different walks of life. I want to encourage people to stand up for what they believe is right, and to also listen and learn with an open mind. I know that I probably wouldn’t be here if it weren’t for the people in my life who support me through the tough times, and I know that I am extremely blessed to have so many wonderful people in my life. And if, with this blog, I can help even one person who is going through a tough time or inspire those who want to travel, then it will be worth it for me. The world has given me so much; and my dream with this blog is to give a little bit back.
Hi. Amanda.
We have never met, but I know your story from your high school years.
I am working with your father. He is great man and he loves you so much. He told me a lot about you and he was very proud of your success as a volleyball player in high school and later in the Ohio State University. When this villainous sickness hit you he was devastated as much as you were.
I am glad that neither you nor your family gave up. In spite of being so young you were able to overcome hardest challenge of life, enjoy your life and share with people your experience and lessons which you learn going through pain and moral suffering . Being so young you have very mature thinking and strong will.
I am enjoying the reading of your blog. It may encourage some people..
Wish you all the best. Good Luck.
Aww thank you so much! I have heard good things about you from my dad as well. I really appreciate your comment and I’m very happy that you have taken the time to read my blog! All the best to you too! 🙂
This is such an inspirational story!! Goodluck on all your future adventures! #girlpower #girlslovetravel
You are so inspiring. Bless you, Amanda.
Amanda, all I can say is WOW! Your compassion for other just exudes from your posts! I didn’t know Colitis had affected other cousins and second cousins. I have colitis as do two of your second cousins on this side of the family. You are truly an inspiration! Thank you for your openness and honesty.
I had no idea!!! Thank you for sharing! I hope all of your UC stays in remission and that you guys enjoy my posts! 🙂 Thanks for reading! 🙂
What an amazing story from an amazing young lady. So glad you are ok. Your mom is fabulous by the way.
Thank you!! I know, right!? I love her so much! 🙂
Moving story. You’re an incredible young woman Amanda.
Thank you so much Dawn!
Wow Amanda what amazing story! So glad you are sharing your experience, I’m sure this will help so many people who are going through this to know they are not alone. Thank you.
Thank you!!! 🙂
You are a truly an amazing young woman. You have had some great highs and some lows and you have come out of those lows a winner!! Very remarkable!
Thank you so much Corrine! That seriously means so much to me! 🙂
This is amazing Amanda! BTW let me know if you are ever in Colorado or want to go skiing.
Evan! Thank you so much! And yes!! I will absolutely take you up on that sometime! 🙂
Love you! Thank you for sharing your story Amanda. Takes a lot of bravery to put this out there, but you are also one of the toughest chicks I know! I can’t wait to hear more about your adventures! 🏕🏄🏻♀️🗺🧗🏻♀️✈️💃🏻
Thank Gretchen! I can’t wait to adventure more with you!
Amanda, I think it’s so awesome that you decided to share your story. I’ve always wanted to ask how everything was, but felt scared and not close enough to you to ask. Can’t wait to read your next post!
Awwww Thanks buddy! 🙂 I am very happy to talk to anyone about it and even if you have any questions at all about ANYTHING I love to share 🙂
Your an inspiration!!!
Aww thanks Mickala! 🙂 You’re awesome!