“My name is Jane, but there’s nothing plain about me. It all started back when I turned 17. I was having the time of my life as a teen and didn’t expect what was to come next ever in a million years. The weekend after my 17th birthday my whole world turned upside down, and not in a good way.
I was throwing up and running to the bathroom countless times and I had no strength to even stand back up. My body felt dismantled, as if I got hit by a truck. Keloid cyst like bumps were popping up all over my body. I couldn’t eat a single thing without feeling severe pain or it immediately leaving my body. It came down to the point where I was rushed to an ER where after several tests and hours they released me with the diagnosis ‘Stomach Flu.’ I went home and after three days my bumps were increasing in size and coming in more. One of the bumps on my right calf was severely infected from scratching. My concerned parents grew to be even more frightened and decided it was time to go to a different ER. My father had to carry his little girl in his own arms because my body was so weak and fragile at this point.
I entered the hospital clueless and scared, more than I’ve ever been. While waiting for hours in the ER I decided to do my own research and WEBMD’d all of my symptoms and the top 3 diagnosis’ that kept coming up over and over again on my phone were: Crohn’s Disease, Ulcerative Colitis, and Diverticulitis. As soon as a doctor came into my room, I said ‘I searched my symptoms and WebMD says I might have one of these illnesses.’ The doctor and nurse both exclaimed, ‘NEVER WebMD your symptoms, that’s the worst thing you can do!’
After examining me and my body, they concluded it was best to admit me into the hospital. I overheard the doctors thinking it might be cancerous. I couldn’t believe just last week I was celebrating my birthday with friends and now I’m in the ER with the unknown happening to me. They immediately started surgeries and cutting me open to remove all of the bumps that have appeared throughout my whole body. I had to stay in the ICU unit for over a week because my wounds were left open. My right calf was severely infected and had to have a skin graft done. They took a thin layer of my skin from my right thigh to apply it over the open wound. Heavily sedated and on pain medications, I was washed on a metal table with hoses that hung down from the ceilings, clothed and fed. I was unable to walk for weeks because my legs were completely bandaged up. I remember crying every single time I had to go to the bathroom because I had to use a bedpan. It felt embarrassing, and dehumanizing. I was living a nightmare, only it was real life.
My friends and family would visit me daily. The love and care I was shown was incredible. My grandma would stay with me every single day, and slept with me each night on a reclining chair. My mother and father would have to come straight from work and stay entire weekends for me. They did plenty of colonoscopies, endoscopies, cat scans, and MRIs in the five weeks I was there. Finally, July 4th, 2012, the doctors came into my room with a diagnosis. The doctor looks at me with such sadness in his eyes and breaks the news to me, ‘I am relieved to finally diagnose you after such a long time, but I also regret to inform you and your family you have Ulcerative Colitis.’
‘What now?’ is all that ran through my mind as the doctors spoke with my mother. ‘How did this happen to me? Why me? What do I do?’ All the voices in the room disappeared and I felt so alone. I was alone with my thoughts, just like before. I thought my road to recovery would be smooth sailing and I would simply just stay in remission. But how wrong was I…
The following days, weeks, and months were extremely difficult. Growing up I battled demons inside my mind and insecurities that would never go away from being fat shamed. I was constantly bullied and teased for my weight and tried everything to lose weight, from doing the 3-day military diet, to skipping meals, to doing weight watchers. When they discharged me I had to be put on a high dose of prednisone for a long period of time to control my severe flare up. Prednisone made me gain weight rapidly, and gave me a ‘moon face.’ After being released from the hospital I battled depression and anxiety – which I spoke of neither, probably out of fear, shame and embarrassment. But how does a young teenager cope with a newly diagnosed disease, scars and bumps all over their body, finals, prom and graduating high school?
Since being released from the hospital, my health was in a constant limbo between flare ups and remissions. My life was a rollercoaster, up and down, up and down. I was diagnosed by my current GI doctor with indeterminate Colitis and Crohn’s. During college I was admitted into the hospital numerous times. Especially during midterms and finals week because the stress not only affected me mentally, but internally and physically. Every single time I would flare up the prednisone prescription would be filled up and another drug for me to try. I couldn’t take it anymore, I started hiding inside my house and not being my normal, fun, outgoing Jane. I felt so defeated in life that I slowly started to lose all the hope I held onto with dear life. I was petrified to go out and have people I know see me the way I was. Every time I looked in the mirror I would break down and think I am disgusting, worthless and no one will love me and everything that comes with being me.
Fast forward to the summer of 2018, I went through a tough breakup with a man I thought loved me but instead was cheating on me countless times. Discovering his infidelity destroyed me. It confirmed my thoughts that I was disgusting, worthless and I am not lovable. He instilled in my mind there was better out there. Someone who he didn’t have to help when I wasn’t feeling well (which was majority of my days), someone who he didn’t have to go to the ER and doctors with, someone who was normal, someone who didn’t have an illness, someone whose body was skinny and not scarred up. My insecurities and anxiety rose even higher and I felt myself spiraling into a deep depression.
One day, I woke up and realized I can’t expect someone to love me when I don’t even love myself. With all honesty, I could not say to him, my family, my friends, or anyone that I loved myself. How disheartening is that? You begin to resent your own self and body. That you wish you weren’t living because anything was better than living with the unknowingness of what will come next, constant debilitating pain, and the curve balls life kept throwing my way. But something in me told me things will get better. I have to get better. Not for him, not for anyone else, but myself. I picked myself up and started eating healthier, the right way, and going to the gym 6x a week. I started practicing self-care and self-love more, as well as reading self-help books and building a strong, caring community on my foodie page on Instagram. The page distracted me, allowed me to learn, build friendships and ultimately help others as well. I started putting myself first, which I haven’t done in a very long time. I started going out more and meeting new people. I traveled to new places and took a trip to LA on my own for two weeks. I pushed myself harder in school to finally graduate college. I finally began to accept what happened to me. I finally began to forgive. I finally learned to love me for who I was.
December 9, 2017 was the day my world would turn upside down again but in a good way. That day I met my current boyfriend and since then my life turned for the better. He entered my life so unexpectedly and I wasn’t ready to get into a new relationship especially since I was finally doing good on my own. But also because I was petrified every guy was the same. They didn’t care or love me, and they would eventually leave me like the rest had. This sweet man chased after me for months until I finally agreed to go out on our first date. And everyday after our first date was as if I was living out a romantic movie. He was the kindest, genuine, compassionate, loving human I ever had a chance to meet. On my worst days, he would be there cheering me on and making them the best they could be. He became my best friend so quickly, and shortly after I fell deeply in love with him.
Till this day I would not change our dating days for the world. And I say that because when you first start dating, you’re constantly going out on dates and being taken out to restaurants. However, my boyfriend and I are BIG food lovers and when we would go out to eat, we would feast! Appetizers, entrees, desserts, drinks, you name it, we got it. My fellow IBS friends you all know what comes next. I flared back up and had to be rushed to the ER. My GI doctor once again pushed on a new drug for me to try, Entivyo, saying, ‘Lets hope this works for you… or we’ll have to discuss surgery options.’ The earnest care my boyfriend showed me during those tough days were indescribable. Our first summer together was filled with setbacks, doctor appointments, hospital trips, medications, and dealing with my million and one side effects. It was one thing after another. Repetitively I would tell him to just leave already, this will forever be my life and he shouldn’t have to deal with it. Every time I pushed him away, he pulled me in closer and would not budge.
Prednisone is the devil in disguise. It brings out the worst in you and long-term use of it is detrimental to your entire health. This summer it made me gain excessive weight again and gave me the famous ‘moon face’ again. But, along with the physical aspects, it gave me skin rashes, joint pains, headaches, mood swings, hot flashes, and severe anxiety. I would cry to my boyfriend on a daily basis. I felt my health and body deteriorating and that I had zero control over it. I would have severe chest pains where I thought my heart and lungs were caving in. Yelling out in pain, my parents frantically rushing to their poor daughter, it just wasn’t right. I kept telling them I couldn’t keep fighting. I didn’t believe that I had anymore left in me after years of chronic pain, exhaustion and anxiety. I kept saying over and over to my dad, ‘I can’t do it anymore. I can’t take this anymore. I just can’t. I can’t do this anymore.’ He looked at me with worrisome eyes and said, ‘Enough with those words. You can and you will. You are so much stronger than this disease, you can’t allow it to consume you.’ And my god did I let this disease consume me. There were so many nights I would go to sleep thinking will I wake up the next morning. So many days where I begged for a long, healthy life.
The end of the summer came. I weened off the prednisone completely and was getting back to my normal self. However, this time around, I had an urge inside of me that I had to take control of my life and health, once and for all. I thought enough is ENOUGH. How much more can I take? I’m only 23 years old, I have my whole entire life ahead of me. That’s when I decided to put my health back into my own hands this time. I started rereading the books, ‘Breaking the Vicious Cycle’ and ‘Undoctored.’ I restarted the Specific Carbohydrate Diet and watched very carefully what I was putting into my body. The SCD diet is a restrictive diet that eliminates starches, grains, carbohydrates and refined sugar. It did miracles for me in a short period of time.
But life is never a straight linear path, it will always throw curveballs your way. Months into the SCD diet my skin started breaking out in rashes and itching. I went to my dermatologist and she diagnosed with eczema for the first time in my life. My new bloodwork showed everything was fine except for my iron and hemoglobin levels. They were extremely low. Therefore, I started to eat more iron-rich foods and made an appointment with a hematologist to get IV iron weekly for 8-10 weeks. My body was slowly adjusting to my new diet, lifestyle, and mindset. I was determined to thrive!
Today, I sit here writing my life story for all of you to read, relate to, or criticize. But for me it’s not just a story, it was a blessing in disguise. As much as I wish everyday to not have this debilitating disease, it shaped me into the young, smart, beautiful, strong woman I am today. It opened my eyes and my mind to see and learn the truth about food, medicine, and the medical world as we know it. It gave me a purpose in life, to help others. It taught me countless lessons at a young age that some people only discover when they’re older.
It taught me to take care of my body because we only get one in our lifetime. It taught me to love myself for all I am, my flaws and everything else that comes with me. It taught me to keep fighting and to never give up or succumb to one option. It taught me to be kind and patient. It taught me how to handle the hardest battles life can toss my way. It taught me how everything happens for a reason. It taught me you can never force someone to stay in your life. It taught me anger is never the answer. It taught me saying ‘no’ is okay. It taught me sometimes it’s okay to not be okay. Rest, breathe and pick yourself back up when you’ve rebuilt the strength. It taught me to live life fully. It taught me life is a gift and to never take the people you love for granted. It taught me how to love deeply and be loved in return. To love what really matters.
Most importantly, it taught me I am a brave warrior who will always keep fighting. You’re allowed to break down, feel defeated and overwhelmed. However, you have to learn how to stand back up on your own two feet and keep pushing. There is always a light at the end of the tunnel – you just have to find yours.
With all of my love, Jane.
This right here is my light at the end of the tunnel.”
Read more inspiring stories about those overcoming illness here:
‘I presented my urgent toilet card. ‘Do you expect us to believe that?’ Bouncers, staff mocked me for my medical condition, accusing me of faking it.’: Crohn’s-Colitis warrior shares invisible illness journey
‘Where’s the nearest bathroom?’ I had to plan an ‘escape route’ if things went south. I went home defeated, but tried to do life as normal.’: Man with ulcerative colitis urges others to ‘choose joy and love’
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