Ellie Howe, the creator and author behind 'A Note of Hope', shares her inspiring story of resilience and determination in the face of chronic illness. From mysterious symptoms to life-altering surgeries, follow her journey of struggle, triumph, and unwavering hope, after being diagnosed with multiple chronic health conditions including Gastroparesis, POTS, and Vascular Compressions - Superior Mesenteric Artery Syndrome (SMAS) and Nutcracker Syndrome.
Hello, lovely readers! My name is Ellie. I'm 24 years old and live with my family outside London, UK. Perhaps most importantly, I am also the creative mind behind the 'A Note of Hope' project. Over the past several years, I've poured my heart and soul into shaping the project into what it is today, serving not only as a platform for sharing the inspiring stories of others but also as a reflection of my journey with chronic illness.
While the primary focus of this project is to amplify the voices and stories of others, I believe it's important to share a glimpse of my journey as well. Living with chronic health issues has profoundly shaped who I am, and it has taught me resilience, empathy, and the importance of finding hope even in the darkest moments. I hope my story explains why I am passionate about this project and what I do!
My Journey Through Illness: From Desperation to Determination.
My journey began at sixteen when I started experiencing relentless, sharp, stabbing pains in my stomach. At the time, I had just finished my GCSE exams, and everyone, including myself, believed these symptoms were due to exam stress. However, these symptoms did not improve over the three-month summer break, and when I returned to sixth form in September, my health only continued to deteriorate.
Not only was I still experiencing chronic stomach pains, but now, every time I ate, I would be consumed by nausea, sickness, and fatigue. It didn't matter if it was a full meal or a snack (although the amount I ate did affect the severity of the symptoms); the food would at first feel as though it was lodged in my chest and, eventually, I would end up doubled over in pain and retching for hours after I first ate.
I also began experiencing embarrassing accidents and would frequently have to run out of my lessons to the toilet, which was humiliating. I felt confused and scared during this time, and the stress I was experiencing seemed to make my symptoms worse. However, because I felt deeply embarrassed and ashamed due to the nature of my problem, I kept quiet about the extent of what I was experiencing.
Naturally, in an attempt to prevent these episodes (and because I was becoming increasingly fearful of eating), I began restricting my food intake or avoiding meals altogether. At this point, my health had become so unpredictable that it became much more challenging to conceal my symptoms from my friends, family, and my teachers.
One day, my head of year called me into her office to question me, and overwhelmed, I broke down and confessed to the difficulties I was facing. Thankfully, she responded with compassion and understanding. She granted me a few months off so I could focus on understanding what was happening with my health and taking steps towards recovery. The expectation was that I would return after the Christmas holidays.
However, I struggled to find medical professionals who took my concerns seriously. Being a young girl expressing difficulty with eating and experiencing stomach pain, I was often dismissed as anxious, anorexic, or overly dramatic. My journey through various healthcare settings was difficult, particularly in those early days. Consequently, I was unable to return to school after Christmas, and I spent the following two years grappling with a healthcare system seemingly determined to invalidate my need for care.
Meanwhile, my symptoms continued to worsen, and I kept losing more weight. Eventually, my health reached a critical point where I couldn't keep down any food or water. I was vomiting up to 40 times a day, bedridden, and dependent on a wheelchair due to weakness from malnutrition. Alongside these challenges, I began to encounter new symptoms unrelated to my initial issues—dizziness, palpitations, fainting, and seizures, but despite undergoing numerous tests, all results returned normal.
During this challenging period, I was fortunate to be under the care of a local consultant who, while unsure of the following steps, recognised the severity of my condition. Understanding that discharging me wouldn't be appropriate given my ongoing weight loss, he decided to refer me to a renowned specialist gastrointestinal and bowel hospital in London. He offered hopeful reassurance, stating, 'If there's anything wrong, they'll find it.'
I felt deep down that this might be my last chance to be taken seriously, especially since discussions had begun at my local hospital about sending me to an eating disorder facility if nothing was to come from this appointment. Words cannot express the overwhelming relief when those specialists looked at me and said, 'I believe you, and I think I know what's wrong.'
After two years of searching for answers and following three additional specialist tests over a month, I finally received a comprehensive diagnosis. My test results showed I had Gastroparesis, a condition that slows or halts the movement of food from the stomach to the small intestine, alongside Intestinal Dysmotility, where the digestive system's muscles and nerves function abnormally.
Additionally, another referral to a cardiovascular clinic in London led to the diagnosis of my dizziness, fainting, and seizure episodes as POTS (Postural Orthostatic Tachycardia Syndrome), a circulatory disorder marked by a rapid heart rate increase upon sitting up or standing.
These conditions often coexist with Ehlers-Danlos Syndrome (EDS), a connective tissue disorder suspected by the registrar. Although I didn't meet all the criteria for an EDS diagnosis, I did meet those for Joint Hypermobility Syndrome (HSD), which is closely related to the hypermobile variant of EDS. HSD shares many symptoms with EDS, including joint hypermobility, chronic pain, and easy bruising, and It's considered the underlying cause of my health issues.
To find out more about Ellie's diagnoses, click the links below:
Gastroparesis
Intestinal Dysmotility
POTS (Postural Orthostatic Tachycardia Syndrome)
Joint Hypermobility Syndrome (HSD)
A few weeks after receiving my diagnosis, I was admitted to the Intestinal Failure Unit, now known as the Intestinal Rehabilitation Unit, at my specialist hospital for tube feeding.
Initially, I was given an NJ tube (nasal-jejunal) which delivered the feeds right into my small intestine. However, due to frequent vomiting, the tube kept getting dislodged, prompting the medical team to opt for a surgical jejunostomy tube instead.
Additionally, a G-tube (gastrostomy tube) was fitted directly into my stomach to help drain excess fluid and hopefully reduce vomiting episodes.
The early days of my Tube Feeding journey
I remained inpatient for approximately three months, but, unfortunately, the outcome was not as successful as anticipated. Despite the direct delivery of nutrition into my bowel via jejunal feeds, my impaired bowel motility made the process painful. Moreover, persistent vomiting led to significant regurgitation of the feed.
Furthermore, in a series of unfortunate events, it was also discovered that my stomach had an unusual shape, likened to a champagne flute. This structural anomaly hindered the effectiveness of the gastric tube intended to drain excess stomach fluid and alleviate my vomiting episodes. Despite multiple attempts to adjust the tube placement, including fitting two additional gastric tubes, none were successful in achieving the desired outcome.
My weight plummeted and the situation grew increasingly dire. In light of these complications, my medical team made the difficult decision to address my nutritional needs through a different approach, explaining that the impact of my gastric conditions had resulted in Intestinal Failure. This condition occurs when the body cannot digest food and retain the fluids, electrolytes, and nutrients essential for life.
I was fitted with a central (Hickman) line, a catheter that is inserted into a large vein, usually in the chest, to deliver medication and nutrients directly into the bloodstream, and started on TPN (Total Parenteral Nutrition). TPN is a method of providing complete nutrition intravenously, bypassing the digestive system entirely.
Ellie Starting on TPN (Total Parenteral Nutrition)
TPN saved my life. I was no longer malnourished and was getting all of my nutrition. My POTS symptoms improved, and the strength I gained meant that I didn't have to rely on a wheelchair or other aids anymore. I also gained 15kg, which took me back up to a healthy weight and BMI.
However, despite this undeniable progress, my most extreme symptoms still weren't under control. I was in constant pain and was still vomiting up to forty times a day. TPN might have saved my life, but I still wasn't able to live. At this time, my team advised me to stop eating and drinking orally in the hope that giving my digestive system a 'break' might alleviate some of my extreme symptoms. Whilst there was no timeline given for this, little did I know then that I would not eat or drink anything for the next two years of my life.
Eventually, my specialist team told me there was nothing more they could do to help me and that they had explored all possible options regarding symptom control. "You're just going to have to accept that this is how your life will be," one of the registrars told me bluntly. At only 18, to be told that I had zero prospects or hopes for my future was absolutely devastating.
Upon discharge, I was placed under palliative care, a service often linked with end-of-life support, but for me, it was because my condition was considered life-limiting, and this service had access to a wider selection of drugs to make me as 'comfortable' as possible. While I wasn't in the immediate stages of dying, the weight of that classification made it feel as though I had reached the end of my life, or at least life as I had known it.
I fell into a deep depression as the weight of my condition left me feeling hopeless about continuing life as it was. Recognising my distress, my mum turned to various online platforms in search of help or answers, where, miraculously, she received a response from a young woman experiencing similar symptoms to mine.
This woman, who already had been diagnosed with the same conditions as me, shared how she was now under the care of a surgeon in London. This surgeon had further diagnosed her with several vascular compressions—namely, SMAS (Superior Mesenteric Artery Syndrome), which occurs when the duodenum becomes compressed between the superior mesenteric artery and the abdominal aorta, leading to symptoms such as severe abdominal pain, nausea, vomiting and Nutcracker Syndrome, which involves compression of the left renal vein, causing symptoms such as flank pain and haematuria.
She explained how both she and her surgeon believed these vascular compressions were contributing to her symptoms and that she was now scheduled for an operation that her surgeon promised would be life-changing.
After urging us to explore it as an option, my mother arranged a private appointment with the surgeon in London. In my depressive state, I was utterly unenthusiastic about the whole situation and didn't think I would be able to handle exploring another avenue of dead ends. I didn't allow myself to hope this could even be possible. You can imagine my shock when, after having an examination and several scans, the surgeon sat us down and told us that he could see that I had both these conditions and that I would be able to have the same life-changing surgery. He couldn't promise me it would be a complete cure, and he made it very clear what a risk such a massive surgery would be, but he said he was sure it would improve my quality of life, even in a small way.
To find out more about Ellie's diagnoses, click the links below:
SMAS (Superior Mesenteric Artery Syndrome)
Nutcracker Syndrome
The surgery was a Roux-en-Y Gastrojejunostomy, to connect my stomach to the second part of the small intestine, bypassing the compressed area and allowing food to move more freely through the digestive tract. In addition, he would also complete a left renal vein bypass to address nutcracker syndrome. This involved taking a vein from my leg to create a new decompressed vein to replace the compressed left renal vein; improving blood flow to vital organs was a key objective of the left renal vein bypass, potentially offering further relief and improving overall health.
The surgery offered a promising solution to the complex challenges of the multiple conditions impacting my digestive system. My mum and I wept in the examination room and the whole way home. That appointment ignited a change in me because I now had one thing to sustain me: hope.
However, much like the rest of my experience, getting to surgery wasn't an easy journey. Initially, the team at my specialist hospital doubted my diagnosis of compressions. They were sceptical that it could be causing my symptoms to the extent I was experiencing, and it took a long time for them to agree to the surgery. To add to the challenge, I discovered that the waiting list for surgery on the NHS was over two years long, and due to uncertainties about whether the surgery would truly alleviate my symptoms and the associated risks, it seemed unlikely to be approved.
With the incredible support of my family and friends, however, a fundraiser was organised, raising enough funds for me to undergo the operation privately. I was genuinely overwhelmed by the response. People from all facets of my life donated and left messages of encouragement and support. Throughout my journey, I lost touch with many people, either because they didn't know how to respond to my situation or because of my feelings of anger, resentment, and embarrassment. Yet, for the first time in years, I couldn't ignore the kindness people showed me. After enduring mistreatment for so long, experiencing such overwhelming kindness shifted my entire perspective on the world.
I finally underwent the surgery on June 21st, 2019. It lasted seven hours, and while I don't recall much from the early stages of recovery, one moment stands out vividly: holding my mom's hand after waking from the operation in the ICU, tears streaming down both our faces and all I could manage to say was, "I did it."
The recovery process was brutal. I spent five days in the ICU, and after I was transferred to the ward, a severe infection took hold, plunging me into a state of delirium marked by high fever and hallucinations. There were several points where we were unsure if I would pull through. For most of my journey, I had sustained myself by taking things one day at a time. However, during this critical phase, I was surviving minute by minute.
Once I had overcome the infection, I continued my efforts to eat, but progress was slow. It took me two and a half months before I could manage to swallow just one bite of food without vomiting. However, even this tiny achievement was overshadowed by persistent struggles. Back at home, I still found myself vomiting multiple times a day, and the surgical pain was relentless. It became impossible for me to lie down without triggering nausea, forcing me to sleep in a sitting position for several months, and my mum and dad took months off of work because I wasn't able to get around the house by myself.
Despite the challenges, I remained determined to persevere. No matter how small, each
tiny step forward fuelled my determination to keep pushing forward. I can vividly recall the exhilarating feeling of going an entire week without experiencing any sickness approximately four months after my surgery. I was on edge, expecting the nausea to strike at any moment, but despite my apprehension, I continued to nibble on toast, biscuits, and plain pasta, and miraculously, nothing happened. It was a moment of pure euphoria, a glimmer of hope that perhaps I had finally made it through the worst.
It would be another month before I felt confident enough to sit down and share a meal with my family. My mum prepared a small plate of pasta with a tiny pot of Bolognese sauce on the side. It was a simple meal, yet it held immense significance for me. Spaghetti Bolognese had always been my favourite growing up, and when people asked me what I looked forward to eating most after my surgery, it was always my top choice. I will never forget the overwhelming emotions I experienced during that meal. For the first time in four years, I savoured every bite without pain or sickness.
As my pain and sickness continued to fade, I was also able to start going out again to places other than the hospital. I started small, accompanying my mum to the supermarket or taking our dog for a short stroll around the block. Initially, I was consumed by anxiety, feeling like a stranger in a world I had been isolated from for so long. Having spent so long immersed in the world of illness and medical treatment, I felt disconnected from the outside world. I lacked a sense of identity beyond my illness, and the journey to rediscover myself outside of that context proved to be a challenging one.
This is where A Note of Hope comes in.
The Start of my Healing Journey: the ‘A Note of Hope’ origin story.
The COVID-19 pandemic arrived eight months into my recovery, casting a shadow over the progress I had made. The lockdown was a convenient excuse for me to give in to my fears and continue isolating myself from the outside world. However, since my health was no longer taking up all my time, I began to seek comfort in simple pleasures and immerse myself in activities I had deprived myself of for so long.
I rediscovered the joy of listening to music, watched films, television shows, and YouTube videos, and ventured into social media by creating new accounts, including an Instagram profile that would lay the groundwork for what would later become A Note of Hope.
Through this Instagram account, I established a small community of young women grappling with chronic conditions like mine. We began exchanging cards for birthdays, Christmas, Easter, Valentine's Day, and other special occasions. This evolved into monthly Zoom calls, providing a lifeline of support and companionship during a time of unprecedented uncertainty.
These virtual gatherings helped me build my confidence and gifted me with something I had long yearned for throughout my journey: a sense of purpose and belonging. For the first time since leaving school, I was surrounded by a core group of friends who understood and embraced me for who I was and all I had been through. It was a profound and transformative experience that helped me reclaim my place in the world and excited me about all the possibilities that lay ahead.
As we emerged from lockdown, I enrolled in the Prince's Trust Enterprise Course, where I was encouraged to explore my passions and interests, which I had put aside for so long. I have always been a passionate writer, and throughout my journey, I found solace and escapism through journalling. My journal became a haven where I could pour out my thoughts without fear of judgment, finding comfort in putting pen to paper and expressing myself freely. I approached my mentor about starting a project that combines my passions: supporting the chronic illness community using my experience and my love of writing and storytelling. This laid the foundation for what the project is today.
I launched the project in May 2022, and over the past few years, I have been curating interviews from the chronic illness communities to create a much-needed space where people could share their stories and feel genuinely valued and listened to. Drawing on my journey for inspiration, it was essential to me that the project would become a place of inspiration and hope for others in similar situations and where they could find solace in the realisation that they are not alone in their journey. The project started on Instagram, building on that small community of young women I initially shared cards with, and in March 2023, I launched this website. However, in the past few months, the project has grown substantially, and since the beginning of 2024, I have been conducting interviews with people worldwide almost every week. The overwhelming response has meant that I've been able to share a new story every Friday here on this website.
The project has evolved over the last three years in ways I could scarcely have imagined. Whether individuals have shared their stories, left comments or messages, or followed along, I'm genuinely grateful for everyone who has invested their time in the project and made the effort to read or share my work.
Where I am now: Overcoming fear, Embracing Growth, and Finding Joy in Everyday.
Reflecting on the life I've built for myself in the last five years following my surgery, I'm filled with an immense sense of pride. In the early stages of my recovery, there were countless times when I felt daunted and overwhelmed, and was tempted to withdraw myself from the world once more. Yet, as I thought about all the efforts it took me to get to this point, I made a conscious decision that I was not going to let fear dictate my life anymore. Instead, I have tried to embrace the challenge of stepping outside my comfort zone, and it's this perseverance that has propelled me to where I am today in my journey.
Although the surgery didn't result in a complete cure, and I still contend with pain, fatigue, and sickness to a small extent, I am thankful to now be leading a fulfilling and joyful life. At the moment, I still rely on TPN twice a week. However, over the past year, I've been working hard to decrease this dependency and increase my oral intake. My goal is to eventually come off of TPN altogether, hopefully by the end of this year.
I have a great circle of friends, enjoy travelling and new experiences, and deeply value the quality time I can now spend with my family and beloved dog, Amber. I am also currently studying and I hope to attend University next year to pursue journalism, a path I have become passionate about through A Note of Hope. My ultimate ambition is to compile my interviews into a book, as well as publish my own story. But for the time being, I am thrilled to have this platform to document my journey and progress.
Thank you for taking the time to read my story. Together, let's continue to spread awareness, kindness, and, above all, hope.
