Category: My Ulcerative Colitis Story

I get a lot of questions about my life with a J-pouch and the three associated (and successful) surgeries. Every day I am grateful to be alive. Without surgery, I would certainly not be here today. So that alone makes it easy for me to say that 100 times out of 100, I would absolutely do it again. But it’s more than that.

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So I’m going to be completely honest… for most of my life, body positivity wasn’t really on my radar. I knew it existed, but I didn’t give it much thought. I never judged others because of what they looked like and instead cared more about what they were like as a person. But my self-talk was another story… Although I was blessed with a body type that was at least close to matching the industry standard idea of “beauty” (I’m tall, thin, have long skinny legs, a flat stomach…), I would always find things that I did not like about myself superficially. I did feel good about working hard at my fitness and nutrition (most of the time), I took pride in the way my body looked (except for little details I would always work on and for a period of time my freshman year of college); but my body type was mostly because of my genetics. But I was so insecure about things like my skin, acne, facial structure, my height, my hair, my giant hands…. I can literally go on and on about all the other things I really didn’t like about myself that didn’t match what was “pretty”. But outer appearance was just one of so many areas that I was overly self-critical about. I have always been naturally accepting of others, but a perfectionist with myself. So admittedly, I never really paid too much attention to body positivity or the ridiculous standard that fashion, advertising, and society set for girls and women to look exactly ONE type of way. That’s not to say that I didn’t know that it was important; it’s just that it never really affected me that much. I never realized how much of a HUGE impact society’s strict definition of “pretty” could have on a person. That is… until I got Ulcerative Colitis, needed invasive surgery, and realized that my body would never be the same again. Continue Reading →

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.