{"id":1884,"date":"2025-10-20T06:18:01","date_gmt":"2025-10-20T06:18:01","guid":{"rendered":"https:\/\/storieshub.xyz\/?p=1884"},"modified":"2025-10-20T06:18:01","modified_gmt":"2025-10-20T06:18:01","slug":"shes-just-a-nervous-child-the-words-still-burn-i-was-13-about-to-start-high-school-but-i-was-different-my-life-was-consumed-with-excruciating-pain-diarrhea-and-the-to-2","status":"publish","type":"post","link":"https:\/\/storieshub.xyz\/?p=1884","title":{"rendered":"\u2018She\u2019s just a nervous child.\u2019 The words still burn. I was 13, about to start high school. But I was different. My life was consumed with excruciating pain, diarrhea, and the toilet.\u2019: Woman recounts her struggle with chronic illness"},"content":{"rendered":"

\u201c\u2019She\u2019s just a nervous child.\u2019 The words still burn through my mind. I fully admit I was a nervous child. I bit my nails and even had a nervous leg twitch, but I had a lot going on as a 13-year-old about to start high school. I experienced all the normal emotions any soon to be high school freshman would feel \u2013 excitement, eagerness, and anxiety to name a few. But I was different. Instead of dreaming about prom, high school football games, and Friday nights with friends, my life was consumed with excruciating pain, diarrhea, and the toilet. I spent hours in the bathroom, I was losing weight at a rapid pace, exhausted all the time, and constantly felt pain radiating through my joints. But despite my symptoms, my diagnosis was \u2018nervous child\u2019 and my treatment? I was told I needed to de-stress.<\/p>\n

\"\"<\/p>\n

I ended up being diagnosed with Crohn\u2019s Disease, which has ultimately morphed into a diagnosis of \u2018Indeterminate Crohn\u2019s\/ Colitis.\u2019 I embarked on the long journey back to health, which involved sitting through 6-hour Remicade infusions, weekly Methotrexate shots I administered to myself, various infusion and oral medications, and even an EpiPen. This long, tiresome journey finally landed me into a temporary remission \u2013 I was symptom free.<\/p>\n

For years I went through the motions of everyday life, fully aware my remission was coming to an end as my symptoms struck with a vengeful comeback. 10 years had passed, but I felt like the same scared little girl when I noticed the toilet was covered in blood. My symptoms forcefully pushed their way back into my life, but I somehow managed to dodge them on my wedding day. It was the glimmer of hope I needed, and I felt so excited to start a new life with my husband. We exchanged the traditional vows with an emphasis on \u2018for better or for worse\u2019 and \u2018in sickness and in health.\u2019 Little did we know we would be taking those words literal so soon after our wedding.<\/p>\n

Six months after our wedding, at the age of 24, I was standing in the kitchen alone on a very hot June day. My phone rang, and assuming it was my husband coming home for lunch, I nonchalantly answered. But it wasn\u2019t my husband \u2013 it was my doctor. He called to discuss the results of my recent colonoscopy, as I expected to hear the typical diagnosis of \u2018active disease.\u2019 Except, this time it was different. The words \u2018high grade dysplasia\u2019 and \u2018cancer\u2019 rolled off his tongue, and all I could do was freeze. I was in shock and hadn\u2019t processed his words until I heard the \u2018click\u2019 of a hung-up phone. My body shook as I collapsed in the kitchen with tears streaming down my face. All I could think was \u2018why me?\u2019 Why was this happening to me?<\/p>\n

A month later I was back at the hospital to discuss different options to tackle my precancerous colon. While I waited for my doctor, a physician in training walked in and sat down next to me. She introduced herself, and immediately cut straight to the point, stating \u2018the best option for you would be a permanent ileostomy bag.\u2019 To be honest, I didn\u2019t really know what that meant. All I knew was the physician in training was suggesting living my best life meant pooping in a bag stuck to my stomach. How on earth would that make things better? My heart, my stomach, my face \u2013 everything shrunk deep inside of me. I was completely taken aback. The only thing I was sure of in that moment was I was determined I would not compromise my quality of life by living with a bag. Absolutely under no circumstances was I going to live with an ostomy bag.<\/p>\n

\"\"<\/p>\n

The physician in training continued launching into my diagnosis and explained what living with an ostomy bag meant. By this time my surgeon had entered the room \u2013 finally, a breath of fresh air! I was convinced the physician in training had it all wrong and felt both relieved and hopeful my surgeon would straighten everything out. But to my dismay, that wasn\u2019t the case. My surgeon began throwing around the phrase \u2018Total Proctocolectomy with a Permanent Ostomy\u2019 \u2013 that was the technical term for my surgery, if I chose to go through with it. My surgeon explained that they would \u2018remove my colon and rectum and pull the end of my small intestines through a tiny hole in my skin which would serve as my stoma. An ostomy bag would attach around my stoma, and any time I had a bowel movement it would run through my stoma and empty into an ostomy bag.\u2019 I appreciated the explanation, but I didn\u2019t understand how it was supposed to make living with an ostomy sound appealing. If anything, it made me more firm in my decision to avoid a bag at all costs.<\/p>\n

But when my surgeon continued to run through my options, my only other choice was to have a portion of my colon removed, which meant I would have to endure routine colonoscopy \u2018cancer checks\u2019 every three months to ensure there was no sign of disease. This sounded okay to me at first, but then my surgeon made the most profound remark that has completely changed my life. He looked at me and said \u2018You never know when Cancer will strike. It could be today, tomorrow, or it could be when you are a 30-year-old, young mother with children.\u2019 That very moment was when it all changed for me. Having a family is one of the most important dreams of my life, and something my husband and I both want so badly. The thought of being a young mom and potentially not being there for my children shattered me. While we didn\u2019t have any children at the time, it made me realize this decision was going to impact and follow me for the rest of my life. That was the moment I knew I was going to live the rest of my life with a permanent ileostomy.<\/p>\n

\"\"<\/p>\n

I wasn\u2019t completely convinced with my decision. I felt like I didn\u2019t really have any other choice but to opt for an ostomy bag. As soon as I got home, I began to scour the internet, looking for any type of blog, website, or article I could find about living with an ostomy. While I was shocked to find so much information, I was even more surprised to learn that a lot of these people weren\u2019t elderly like common misconceptions of ostomies would suggest. These people were my age, and they were learning to adapt, live, and love life with a bag \u2013 and I wanted to be just like them. If they found happiness, I know I could too. That is when I decided to completely change my mindset, go all in with the surgery, and change my life forever. I was going to live with a permanent ileostomy, and I was going to be proud of it.<\/p>\n

\"\"<\/p>\n

It\u2019s funny how things and people change over time. I was so against the idea of life with an ostomy and fell victim to all the misconceptions \u2013 I was misinformed. But the moment I decided to adopt a positive outlook on my situation, my life changed forever.<\/p>\n

\"\"<\/p>\n

I learned to love myself, my new body, and to not worry about what others think. I began to value myself, my life, and learned what it meant to feel confident.<\/p>\n

\"\"<\/p>\n

I have lived with my ostomy over two years and I can honestly say I couldn\u2019t imagine my life without it. I\u2019m no longer in pain, I\u2019m not stuck on the couch, and I don\u2019t spend my days on the toilet. My ostomy bag has changed my appearance on the outside, but its also completely changed who I am. It has allowed me to reevaluate what\u2019s important in life, it has given me a voice and passion for advocacy and the power to help others in my situation, and has encouraged me to grow as a person. My ostomy has given me strength and health, but most importantly, it has given me a second chance at the life I never knew I was missing.\u201d<\/p>\n

\"\"<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

\u201c\u2019She\u2019s just a nervous child.\u2019 The words still burn through my mind. I fully admit I was a nervous child. I bit my nails and<\/p>\n","protected":false},"author":1,"featured_media":1892,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[],"class_list":["post-1884","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-story"],"_links":{"self":[{"href":"https:\/\/storieshub.xyz\/index.php?rest_route=\/wp\/v2\/posts\/1884","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/storieshub.xyz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/storieshub.xyz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/storieshub.xyz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/storieshub.xyz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1884"}],"version-history":[{"count":1,"href":"https:\/\/storieshub.xyz\/index.php?rest_route=\/wp\/v2\/posts\/1884\/revisions"}],"predecessor-version":[{"id":1893,"href":"https:\/\/storieshub.xyz\/index.php?rest_route=\/wp\/v2\/posts\/1884\/revisions\/1893"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/storieshub.xyz\/index.php?rest_route=\/wp\/v2\/media\/1892"}],"wp:attachment":[{"href":"https:\/\/storieshub.xyz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1884"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/storieshub.xyz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1884"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/storieshub.xyz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1884"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}