Crohn’s disease: “You will never know how incredibly strong you are!”
Published 10 Aug 2022
Two years ago, Lucy was dying from malnutrition and inflammation of her organs, which were beginning to shut down. Hence, she quickly went through a lot of tests and had an incredibly rapid diagnosis with Crohn’s disease.
Shortly after, she launched her website, My Crohn’s and Me, to raise awareness about Crohn’s disease.
Read her story below!
Hello Lucy, thank you for agreeing to talk to Carenity.
First of all, could you tell us more about yourself?
My name is Lucy, I am 20 years old and I am training at drama school in Musical Theatre with the hopes of becoming an actress. I also have an incurable autoimmune disease called Crohn’s disease! I live with my boyfriend Tom who I have been with since before my diagnosis, he is amazing with my illness, is my registered carer and he is also training to become an actor.
My family is everything to me and has been my biggest support system since I got sick. My mum, dad and 2 brothers always help to look after me when I get out of hospital stays but more importantly they don’t treat me any different than they did before I got ill, which makes me feel a lot better about it.
I have many things in life that give me joy. My dog Luna is definitely the biggest one, we got her when I first got diagnosed to cheer me up and it worked! She gives me motivation in life and gives the best cuddles when I am flaring up. I am massively passionate about dancing, singing and acting, hence why I am training to do it as a career!
My Crohn’s disease has made that much more difficult than if I didn’t have an illness and has changed my plans for the future but I still love Musical Theatre as much as I used to!
In December 2020, you were diagnosed with Crohn’s disease at age 18. What were the first symptoms? How many doctors did you see and what tests did you have to take?
Throughout my childhood I never had any problems with my health. I was always very fit, whenever I got a cold I recovered incredibly quickly and never missed days off school for it. So it was a big shock when I found out I had an autoimmune disease.
I began to notice a few changes in my health from when I moved to University in September of 2020. It 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 diarrhoea 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 it’s 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.
I quickly became very weak and lost 4 pounds in a month. I am a student training in Musical Theatre, and in my final week before 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 half way 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 3 weeks.
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 worst 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 132mg/L, they are supposed to be below 10mg/L. My Calprotectin levels (bowel inflammation) were above 2500mcg/g, they’re supposed to be below 50mcg/g. My endoscopy showed extreme ulceration of my stomach, colon, large intestine and small intestine. My haemoglobin levels came back extremely low, and hence I was also diagnosed with iron deficient anaemia and had some transfusions over new year 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 both helped me to get discharged in the new year.
My diagnosis is a much quicker one then most IBD fighters go through. I am glad I was told straight away, but the only reason we reached that rapid diagnosis was because 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!
How were you told about the diagnosis and how did you feel?
The way I was told about my diagnosis was pretty unusual, it was peak covid times and so I was all alone in hospital as no one was allowed to see me, all doctors were in these massive hazmat suits and would talk to me with a microphone from afar. It felt like a strange alternate universe movie! And because I was on high alert as a patient who was in need of urgent care and was very weak, doctors all spoke to me as if I was aware how sick I was, which I wasn’t! I had had hundreds of tests in under 24 hours and the final one that determined my diagnosis was an endoscopy.
At this point I was on intraveinous nutrition to keep my body functioning as it was suffering from extreme malnutrition and dehydration and I had tubes going in and out my body all over me. I was put on extremely strong sedation for my procedure to help with the pain and after it was over I was wheeled back into my hospital room.
I was very high on morphine and pain killers so was very spaced out, only 2 minutes after the procedure the doctors came into my room and told me me that I have very severe Crohn’s disease, it is an incurable autoimmune disease that I will never recover from, my life will never be the same and I was to be started immediately on extremely strong steroids that will wreck my body but hopefully will prevent me from losing my bowel and, immunosuppressants to destroy my immune system. They didn’t ask how I was, there was no sympathy or checking in on how I felt, I was simply left by myself in a room for 30 seconds before a bunch of nurses came in and started to hook me up to treatment machines and I was wheeled onto a bowel ward with 7 other people that were all 70 years or above and some had severe dementia.
At first I didn’t realise what happened, I was so high on sedation that I didn’t really understand what the doctors had just told me. I called my mum and boyfriend and told them I had Crohn’s disease, they were completely shocked and confused and started crying, but I didn’t understand what was happening. It was only 30 mins later when the medication wore off that I started to realise the severity of what I was just told, I was completely distraught, and suffered from a panic attack. No nurses came to help, they weren’t allowed near me because I had just started this new immunosuppressive treatment that made me highly vulnerable, and that day there had been a covid outbreak in the hospital so the hospital went on lockdown. It was incredibly upsetting and traumatising.
How did the illness evolve over the years? What were your treatments? Does it help?
My illness has changed a lot over the past year and a half, it’s definitely been a rollercoaster to say the least! I’ve still not yet reached any form of remission sadly but I am determined to keep pushing through!
I was first on steroids (hydrocortisone and prednisolone) to combat my internal bleeding and extreme ulceration and inflammation, I had injections and oral pills. That was the most difficult treatment I’ve been on without a doubt, the side effects were crazy! I was on them for about 4 months and they worked for a few weeks but then stopped being effective. At the same time I was on the immunosuppressive treatment Adalimumuab, I would do 2 injections every 2 weeks and did this from Dec 2020, til Feb 2021. Unfortunately I was a primary non responder to that treatment, which meant I never reacted biologically throughout the entire course. The combination of the steroids becoming a secondary non responsive treatment and the immunosuppressive biologic being a primary non responder led to my disease progression and becoming yet again, life threatening.
Because of this I was started on a new, much stronger treatment called Ustekimimab, which is a different type of immunosuppressant. I had a loading dose via intraveinous drop followed by injections every 8 weeks.
On top of this, my disease had over taken my entire digestive system and I needed to give my bowel a break and so I was put on a liquid feed via feeding tube, intraveinous nutrition and liquid drinks. This meant I was nil by mouth (no food whatsoever) for 4-6 months. That was definitely a challenge!
Unfortunately that did more harm than good and almost doubled my inflammation levels in my bowel, we are unsure why, but we think the liquid didn’t make enough waste which meant my bowel had pressure on it for days at a time causing damage.
Therefore we made the decision to slowly introduce some food back into my diet, and at that point the ustekimimab has started to work. In the summer of 2021 I was probably the most healthy I had been since my diagnosis, was eating a very small amount and was able to live a semi normal life. That was all flipped upside down when last September (2021) I found out that I had a serious bowel infection called C Diff, which I had developed as a result of all the immunosuppressive and antibiotic treatment I had for my Crohn’s Disease. It’s a bacterial infection that impacts mostly the colon and causes a lot of painful and debilitating symptoms.
And seeing as I have inflammatory bowel disease and immunosupressed my doctors were quite worried about me. For people like me, infection can quickly progress to fatal disease if not treated promptly. So I was started immediately on an antibiotic course called vancomycin which essentially stops the infection from growing throughout my Colon and prevents it from dividing and multiplying.
The antibiotics made me pretty sick with side effects and exhausted me for weeks. But unfortunately it did not work in getting rid of the infection and I relapsed and tested positive for C Diff again in November. So my doctors started me on a longer, stronger course of Vancomycin which I took up until the end of 2021. It completely took its toll on me and it ended up triggering my Crohn’s into a continuous flare. I hoped that this time it would have gotten rid of the infection. And my doctors told me it was extremely unlikely I would still have the infection still after how much treatment we had thrown at it. But never the less, in February 2022 I relapsed again and tested positive for C Diff for a 3rd time in 6 months.
My IBD team and gastroenterologist took me in for tests and took 18 biopsies from my colon. From this they saw that the infection was in extremely high concentration and my gut was getting severely damaged. And this infection was holding my Crohn’s treatment back and stopping it from fully working. So in a last attempt to get rid of the infection, I was put on the strongest and longest possible antibiotic course of vancomycin to try and inhibit the growth of the infection followed by another antibiotic called fidaxomicin which is made to kill the infection itself. All of this treatment bedrid me so I ended up having to step away from University and didn’t really leave my bed for 3 months straight.
However, we have since learned from all the antibiotics, my immunosuppressant and steroid treatments the entire lining of my GI tract has been destroyed and so when I get infection I have little to no chance of fighting it off as I have no good bacteria to balance it out and also don’t have an immune system to kill it either.
So after discussing it with my gastroenterologist and consultant, we have decided to transplant the lining of my bowel to try and help give me a better chance at life after infection. I will be getting what’s known as Faecal Transplant in which a donor who does not have any signs of infection, doesn’t have Crohn’s Disease and has a perfectly healthy bowel and is a match for the levels of good bacteria I need donated. Bacteria will be taken from a donor and spun in a lab and tested to ensure it matches my needs, and then will be traplanted into my GI tract. And then hopefully, fingers crossed, I will no longer have C Diff and shall have a much higher chance of fighting off infection and reaching remission for my IBD. That brings us up to now! My treatment for Crohn’s seems to be going okay, and I am on a waiting list for a transplant!
What impact has the disease had on your daily life? How do people around you view the disease? Are they understanding and comforting? Do you feel free and comfortable to talk about it?
This disease has changed how I live my life in many ways, mostly because pre-Crohn’s I was very energetic, constantly on the go and incredibly sociable. Now I have to give myself time to rest because of the exhaustion the chronic pain and fatigue causes me. I can’t socialise like I used to because I am extremely clinically vulnerable as I am immunosuppressed. I view being chronically ill as a full time job, I no longer plan my life around holidays and parties like most 20 year olds, instead I have to organise my life around treatment, injections, tests and hospital appointments.
BUT, I still live an incredible life, I have an amazing support system of friends and family and my amazing boyfriend! Since I’ve started posting online about my illness most reactions from people have been very supportive, I get the odd person being very rude and not caring to educate themselves enough to understand what my illness is before they judge, but that’s life. People don’t tend to understand what IBD is but are sympathetic, which is comforting. I do feel very comfortable talking about my Crohn’s Disease, I love talking about it, in fact it makes me feel empowered and in control. I don’t worry too much about people judging because if they do, that’s their problem, not mine. When you’ve been through as much as people with IBD have, you learn not to care about people who put you down and try to just live life to the fullest.
A few years later, you decided to launch your blog “My Crohn’s and Me”. Why did you make this choice? What messages do you want to convey to your readers?
I decided to start a blog to document my journey of being diagnosed with an incurable autoimmune disease at 18 years old, I wanted to show other Crohn’s and colitis warriors that they are not alone and give an insight to others into what our lives are like with constant hospital appointments, medication and having to fully adapt to my new lifestyle.
Before I was diagnosed with Crohn’s Disease I had never heard of it, most people when they think of autoimmune diseases think of multiple sclerosis 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, and is higher then both lupus and multiple sclerosis. It is a chronic illness that can have a massive impact one the patients 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”.
Unfortunately there is a massive stigma around Inflammatory Bowel Disease and most people who are not aware of the diseases full impact think its just when you go to the toilet a lot, which couldn’t be less true. I was so terrified by my symptoms before diagnosis and so embarrassed that I didn’t tell anyone, I mean who wants to call their mum when they’re 18 and say you’re constantly bleeding when you go to the toilet. It ended up getting so bad that I was rushed into hospital on Christmas Day completely malnourished and dehydrated because my body had started to completely shut down. That shouldn’t ever happen to anyone, I want to raise awareness to allow people to help get diagnosed early so they do not have to experience a flare like I did.
I am writing about Crohn’s itself as I learn about it, my experience of living with this disease during the pandemic, advice for those both with Crohn’s and without Crohn’s, and just in general document my journey. I aim to expose how difficult the fight with IBD is and the tough times we go through as chronic illness battlers but also show what amazing lives we can lead despite our conditions. I want to help to break the stigma and help Crohn’s and colitis become more well known conditions.
What are your plans for the future?
I hope in the future to keep raising awareness and money for Crohn’s and colitis to spread the word and break the stigma! I hope to do more work for charities to help people noticed bowel systems for IBD and bowel cancer! I hope to write my own book and start a YouTube channel and podcast to build the chronically ill community! My dream is to become a TV presenter and have my own show to help show the world what amazing things disabled people can do!
Finally, what advice would you give to Carenity members who, like you, are affected by Crohn’s disease or have a loved one affected?
To those with Crohn’s Disease, believe me when I say, you will never know how incredibly strong you are! We are chronically iconic and no matter how much our bodies throw at us, we can keep pushing through and show it who is boss! Just because our immune systems don’t work like others, doesn’t make us any less of a person! Stand up for yourself and be proud!
To those with loved ones who are affected by IBD, remember to look after yourself! Seeing someone with an illness struggle with their health can be very upsetting and stressful, so it’s important to look after yourself so you can be there for your loved one when they need you to be!
Any last words?
Thank you so much Carenity for helping me raise awareness and supporting me!
Here are my socials!
Blog: My Crohn's and Me
Sticker Shop: https://www.redbubble.com/people/creativecrohnie/shop
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