‘I was told I was going to die. I went from being a normal teenager to a patient in need of urgent care in 2 weeks.’: Woman shares journey with Crohn’s disease, mission to help others

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“My name is Lucy Harman, I am 19 years old, and on the 26th of December 2020, I was told I was going into organ failure and I was going to die. I went from being a normal teenager at university to a patient in need of urgent care in a hospital ward within a matter of two weeks. This is my story of how I took a disease that nearly killed me three times and turned it into a social media movement of positivity and support.

girl holding a needle
Courtesy of Lucy Harman

I have an incurable autoimmune disease called Crohn’s Disease. What’s Crohn’s you ask? Well, to put it scientifically, it is a disease that causes my digestive system to get inflamed and covered in ulcers which causes internal bleeding and prevents my body from absorbing nutrients, hence causing malnutrition and dehydration. It triggers a disorder I also have called Anemia, which means my body doesn’t produce sufficient red blood cells to combat my blood loss from the disease. But to put it in simple terms, Crohn’s is one massive pain in the a**…literally.

Before I was diagnosed with Crohn’s Disease, I had never heard of it. Most people, when they think of autoimmune diseases, think of MS or Lupus, but in fact, in the UK it is estimated that 300,000 people suffer from IBD. Which roughly equates to 1 in every 210 people in the UK. Which is higher than both Lupus and MS. It is a chronic illness that can have a massive impact on the patient’s life, causing intolerable abdominal pain and extreme fatigue. It is referred to as an invisible illness, as from the outside you wouldn’t be able to tell someone has Crohn’s unless maybe they have an Ostomy Bag on show, which not all patients have. This can make it very difficult when disclosing your condition to someone as we are often met with the phrase, ‘Oh, well you don’t look sick.’

iv in a woman's hand
Courtesy of Lucy Harman

I began to notice a few changes in my health from when I moved to university in September of 2020. I started off with fatigue and abdominal pain, but that didn’t strike me as worrying because I had very long stressful days, and simply blamed it on that. I then began struggling to keep any food down as I would throw it up or suffer from bad diarrhea almost instantly after eating. I blamed that on the bad canteen food, or maybe just a food intolerance I wasn’t yet aware of. The one symptom that struck me as the most worrying, and when I began to think something must be seriously wrong, was when I noticed blood in my stools, it was just small amounts to begin with but quickly worked its way up to a very dangerous volume. I was passing a large amount of blood in my stools 20 times a day. I Googled what it may be linked to, and was so terrified by the results that I put my phone down and tried to pretend like nothing was wrong.

IV in a woman's arm
Courtesy of Lucy Harman

I quickly became very weak and lost 56 lbs. in a month. I am a student training in Musical Theatre. And in my final week before the Christmas holidays, I had a jazz dance mock. I turned up and could barely walk, every time I moved my head my whole vision went black, and I was in so much pain. I ran out halfway through after falling over because I felt so weak and threw up outside. All my vomit was drenched in blood, and that’s when I knew I was seriously ill. My parents noticed I was getting quite sick, and although I had attempted to hide symptoms out of fear, we didn’t have much choice but to seek help because I had stopped eating and had not consumed any food in three weeks.

woman in the hospital
Courtesy of Lucy Harman

My boyfriend called me and told me I had to go to the hospital on Christmas Eve, but I was so desperate to spend time with my family that I ignored him. But my health took a turn for the worse, and on Christmas Day I was rushed to hospital. I was examined by doctors and told I was dying from malnutrition and inflammation of my organs, which were beginning to shut down. Hence, I went through a lot of tests very fast and had an incredibly rapid diagnosis. My CRP levels (Inflammation levels) came back at 132, they are supposed to be below 10. My Calprotectin levels (Bowel Inflammation) were above 2500, they’re supposed to be below 50. My Endoscopy showed extreme ulceration of my stomach, colon, large intestine, and small intestine. My Hemoglobin levels came back extremely low, and hence I was also diagnosed with Iron Deficient Anaemia and had some transfusions over New Year’s to help me gain some strength again. Once I was told I had Crohn’s I was immediately put on an extremely high dosage of Hydrocortisone and Prednisolone Steroids and Immunosuppressants, which helped me get discharged in the new year. My diagnosis is a much quicker one than most IBD fighters go through. I am glad I was told straight away, but the only reason we reached that rapid diagnosis was that I was so seriously ill that they had no choice. I urge anyone with a change in bowel movements or a sudden change in health to just get it checked!

girl in a Crohn's sweatshirt
Courtesy of Lucy Harman

Since being diagnosed I have realized how much of a mental struggle Crohn’s Disease is. I have had to learn to adapt to a completely new lifestyle centered around hospital visits and treatments. I have had to accept I will never be who I was before I got IBD, and have to learn that people will judge and many do not understand and will never understand what it’s like to be me. As IBD fighters, we have to find coping strategies. For me, that was social media and raising awareness. I set up www.mycrohnsandmeblog.com and my Instagram @my.crohns.and.me to help raise awareness for Inflammatory Bowel Disease. On my website, I post regular blog posts about my experiences with Crohn’s disease, treatment, positivity, mental health, body acceptance, and advice for those living with IBD and people who know someone with the condition. I also post advice and updates on my Instagram along with quotes to brighten up people’s days. It works as a way of being able to document my journey and allow others to come on it with me.

One thing I didn’t expect when I was diagnosed was how much it would impact my friendships and relationships. I have had hundreds of messages from new friends, old friends, friends of friends, and even strangers with messages of support. People may not realize how helpful it is, but even a simple ‘I hope you’re okay’ and ‘I am here for you’ can make my day just that little bit easier. I have noticed a change in tone, it feels like everyone pities me and doesn’t really see me as Lucy anymore. Yes, I am now very sick and sometimes I do like to talk about my Crohn’s, but that doesn’t mean I don’t still live a normal life and have normal things to talk about. I appreciate the sympathy and it really does mean a lot to know that people are thinking of me, but sometimes I just want to feel like the old me again so a normal conversation would do me the world of good.

My boyfriend Tom has been my rock throughout all of this. He had only known me for three months when I was hospitalized and yet his support and kindness never wavered once. He called me every single day in the hospital, and after I had gotten out of my four-month flare-up and was allowed to see people again he never left my side. Tom registered with my carer and moved in with me at uni. That boy is mature beyond his years, and I do not think I will ever be able to thank him enough for everything he has done for me.

couple embracing outside
Courtesy of Lucy Harman

One positive thing that Crohn’s has done for me is that it has brought me closer to my whole family. My parents have been so amazing since my diagnosis, I have no idea what I would have done without them, but there’s no denying it’s been a struggle for both them and me. Being the youngest child, who had only just left home to go to university, both my mom and dad were suddenly forced back into becoming full-time carers. None of us three kids had ever really had any proper illness problems, so my very rapid diagnosis was a massive shock and we didn’t really know how to deal with it. They are both the most supportive people in the whole world, and even through the hardest of days when I am stuck in a hospital covered in tubes, they remind me what matters in life. I think it has been a very unusual experience for both of my brothers to see their little sister get so sick, but they have been filled with nothing but kindness and jokes. My favorite thing is that they don’t give me any pity, they just treat me like their annoying little sister still. My grandparents and aunties and uncles have all been there every step of the way with messages of encouragement and love. I am so lucky to have a family like mine, who even through this past year have all come together to support each other.

family photo outside
Courtesy of Lucy Harman

Crohn’s Disease is never smooth sailing, it’s a rollercoaster, with both symptoms and emotions. One of my lowest moments was when I was first fit with a feeding tube. My doctors were worried about the flavoring in my Modulen (Liquid Feed) so my dietitians wanted to give me an NG feeding tube for two months that went up my nose, down my throat, through my esophagus, and into my stomach. There was a complication with the procedure and it ended up being one of the most painful experiences of my life. A blood vessel had been hit and I was throwing up blood for hours. This resulted in the tube being flipped, the end curled and got caught in my stomach and because I was throwing up so violently, the curled tube came up into my esophagus and caused me to choke, and I ended up having to rip it out myself. It was such a traumatic experience, and after months of constant panic attacks and dreams about it, I was diagnosed with PTSD.

girl with a feeding tube
Courtesy of Lucy Harman

On a more positive note, one of my highs that will stay with me always was the first time I ate again after months of being nil by mouth. All I ate was plain noodles, but those tasteless things tasted better than any takeaway ever could. At that moment I felt the hope that life will get better again. When you’re in a flare-up that never seems to end, something as small as one hour without fatigue is all you need to give you the motivation to keep going. It’s the little things in life.

As of right now, there is still no known cure for Crohn’s disease, and so it is classed as a chronic illness because those who are diagnosed will live with it for their entire lives. Doctors use drugs, and sometimes surgery, to give relief from symptoms. Patients have periods of good health when they aren’t suffering from symptoms, which are called remission. However this doesn’t always last, and patients relapse and flare-up, which is when symptoms are at their worst. This may be as a result of ineffective treatment, a food triggering a flare-up, or a very stressful event putting your body under pressure. I spent this past summer raising money for Crohn’s and Colitis UK, a charity that puts its efforts into finding a cure for inflammatory Bowel Disease. My friends and I walked the equivalent of 23 marathons during the month of June, and from donations, I raised over $4,700. I was so proud of myself for taking something so negative and creating a want for change. I hope to spend every summer raising money to hopefully help find a cure in my lifetime.

girl standing next to donations
Courtesy of Lucy Harman

Now that I am coming up to my one-year anniversary of being diagnosed with Crohn’s, I have been spending a lot of time reflecting on what this disease has taught me.

I have learned that Crohn’s is never going to go away, it will never not be a negative thing. It will always be painful and my treatment will always be nasty. I will always have this disease so I have to turn the negatives into a positive in order to survive. I can’t stop my immune system from attacking me, but I can control my mindset and so I choose to celebrate the things I am lucky to have. I celebrate my bravery, I celebrate my strength and I celebrate the new person I have become. It has taught me what matters in life. Crohn’s took so much from me, but it’s also given me a new sense of life. It chose to inflict pain and take my happiness, but I chose to inspire and remind people of their worth. It showed me how difficult and painful life can be, but I saw how strong and resilient people are.

I am very aware of how lucky I am, I could have easily gone another few days of ignoring signs and chances are I would no longer be here. So I truly do count my blessings every day. Life is always worth it, even if it comes with setbacks and pain, life will always be worth it. Watching that sunset on the beach, laughing with my friends till it hurts, listening to the same song over and over and never getting bored. My life may have changed but the world around me hasn’t, that beach will always be there, my friends will always be around, that song won’t disappear from the face of the earth. Sometimes I may lose focus of what is important in life and I may stumble, I will fall, I will feel weak but what matters is being strong enough to know I can get up again, I can keep going and eventually my path in life shall carve.

couple hugging with their dog
Courtesy of Lucy Harman

Sometimes life can take you in a direction you weren’t expecting, but you are strong enough to face anything. Take today as it comes and don’t worry about tomorrow until it’s here. Each setback is just a hill to climb, eventually, you will come down the other side and things will be stable for a while. Turn your pain into power and your sadness into strength. Face the unknown like it’s well known.

Crohn’s never has and never will control our life, we take charge now.”

girl smiling
Courtesy of Lucy Harman

This story was submitted to Love What Matters by Lucy Harman from England. Follow her Instagram here and here and her blog. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

Read more stories about chronic illness warriors:

‘I kept getting UTIs. My male doctor said, ‘Do you think the pain might be ALL IN YOUR HEAD?’ I was mortified.’: Woman with chronic urinary tract infections urges ‘you are not alone’

‘It’s all in your head.’ I was urinating 30 times a day. It was hard to bear. I was left with a tube hanging between my legs.’: Woman diagnosed with Interstitial Cystitis, ‘It’s given me confidence’

‘My entire body feels like it’s trapped under bags of cement, any attempt to lift a finger causes excruciating pain. Tears roll down my face.’: Lupus warrior shares self-love journey

‘I’ve never seen ANYTHING like it.’ It was akin to a freak accident.’: Crohn’s survivor undergoes serious illness, ‘I will always fight to be here’

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