Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.
"I am very grateful to share Bethany’s story as a part of the ‘A Note of Hope’ project. Bethany discovered our project on TikTok and reached out to share her experience with Crohn’s Disease and other chronic conditions, and which she has been living with since she was sixteen. She filled out our standard questionnaire, and as I read through her responses, I was equally saddened and inspired as she recounted everything she has endured over the past decade.
There are so many aspects of Bethany’s story I relate to, especially as a young woman who also became unwell at sixteen and has a similar condition to Crohn’s. The emotional and physical battles she has faced resonate deeply with me. Despite everything she has been through, however, it is clear that she has not lost her sense of self and, most importantly, her kindness and compassion - something I can attest is very difficult to maintain in this landscape. Sharing her story not only brings me a sense of solidarity but also underscores the importance of community and support in our shared experiences.
It is no doubt that Bethany is an incredible young women, and I am so happy to have the opportunity to share her inspiring story!" - Ellie Howe, creator and author of 'A Note of Hope.'
“Hey! I’m Bethany. I’m twenty-five and I have Crohn’s Disease - I was diagnosed with this in 2015 when I was sixteen.”
Bethany has been living with Crohn's Disease, a type of inflammatory bowel disease (IBD) since she was sixteen years old. Now twenty-six, having lived with Crohn's for almost a decade, Bethany has gained a profound understanding of the ongoing challenges associated with managing this long-term condition.
Renowned for its diverse array of symptoms, from severe abdominal pain and persistent diarrhoea to fatigue, weight loss, and malnutrition, Bethany's journey with this chronic inflammatory condition began in 2015. The initial signs were alarming and unmistakable.
She recalls, "I remember first noticing blood in my stool, which worried me." Blood in the stool is a characteristic symptom of Crohn's Disease, often signalling inflammation and damage to the gastrointestinal tract.
In Crohn's Disease, inflammation can occur anywhere along the digestive tract, from the mouth to the anus, which can lead to various complications, including ulcers, fissures, and erosions in the lining of the intestines. When these inflamed areas become irritated or ulcerated, they may bleed, resulting in the passage of blood in the stool.
For Bethany, the sight of blood in her stool was a stark indication that something was wrong. Her first instinct was to inform her mother, who, having been diagnosed with Crohn's herself, understood the seriousness of the situation and immediately took Bethany to their family GP. This prompt action, influenced by their familial connection to the condition, ensured that Bethany received timely medical attention. Fortunately, Bethany's mother's gastroenterologist consultant agreed to take her on as a patient, providing her with specialised care due to her family history and the situation's urgency.
To find out more about Crohn's disease, click the links below:
Crohn's Disease
Crohn's disease is a long-term condition where the gut becomes inflamed. The main Symptoms are Diarrhoea, stomach ache and cramps, blood in your stool, tiredness, and weight loss. It's one type of a condition called inflammatory bowel disease (IBD).
“I was then diagnosed with Ankylosing Spondyloarthritis and Bilateral Sacroiliitis, about 9 months after my Crohn’s was diagnosed...”
Unfortunately, Bethany's health challenges didn't stop with her diagnosis of Crohn's Disease. Just nine months later, she was confronted with more daunting news.
"I was then diagnosed with Ankylosing Spondyloarthritis and Bilateral Sacroiliitis," she says, both conditions which typically start in late adolescence or early adulthood and progress slowly.
Ankylosing Spondyloarthritis (AS) is an inflammatory arthritis that primarily affects the spine and the sacroiliac joints, which connect the lower spine to the pelvis. It is part of a group of spondyloarthropathies, characterised by inflammation of the vertebral joints and other areas where tendons and ligaments attach to bones.
Ankylosing Spondyloarthritis causes long-term inflammation of the spine and sacroiliac joints, leading to pain and stiffness. Over time, this inflammation can cause some of the vertebrae in the spine to fuse, resulting in a loss of flexibility and a hunched posture. Common symptoms include chronic back pain and stiffness, particularly in the lower back and buttocks, which often worsen after inactivity. Other symptoms may include fatigue, pain, swelling in other joints, and, in severe cases, difficulty breathing due to the fusion of ribs and spine.
Bilateral Sacroiliitis is the inflammation of both sacroiliac joints, where the lower spine and pelvis connect. It is a common feature of ankylosing spondyloarthritis but can occur independently or as part of other inflammatory conditions.
Like AS, bilateral sacroiliitis involves inflammation but is specifically located in the sacroiliac joints. The primary symptoms include pain in the lower back, buttocks, and sometimes down the legs, often exacerbated by prolonged standing or sitting. It can be severe enough to interfere with daily activities, echoing Bethany's experience, which she describes as excruciating back pain that soon spread down her legs, making walking a near-impossible task.
"I remember getting awful pains in my back, which spread all down my legs and resulted in me not being able to walk properly," Bethany recounts.
The journey to a proper diagnosis, however, was fraught with frustration, in direct contrast to her experience of being diagnosed with Crohn's. Initially, Bethany saw several doctors who dismissed her symptoms as merely poor posture. Additionally, navigating the hallways of her school became a daily ordeal, compounded by the insensitive comments from peers who didn't understand her condition. The lack of immediate recognition of her symptoms by medical professionals added to her struggle, as early diagnosis and treatment are crucial in managing symptoms and preventing severe complications.
Thankfully, Bethany's persistence paid off. She was able to see another GP who took her concerns seriously. This GP made an essential connection between her symptoms and her existing Crohn's diagnosis. Ankylosing Spondylitis (AS), Sacroiliitis, and Crohn's share several genetic, immunological, and pathophysiological characteristics, which leads to a higher incidence of concurrent diagnosis in patients. Ultimately, this recognition was pivotal, leading to further tests and (finally) the correct diagnosis.
To find out more about AS and Sacroiliitis, click the links below:
Ankylosing Spondylitis (AS)
Bilateral Sacroiliitis
Unfortunately, there is no current cure for all of Bethany's conditions—Crohn's, Ankylosing Spondylitis, and Bilateral Sacroiliitis. For AS and Sacroiliitis, treatment focuses on reducing inflammation and managing pain to improve quality of life. Options include nonsteroidal anti-inflammatory drugs (NSAIDs), biologics, physical therapy, and, in severe cases, surgery.
Treatment for Crohn's Disease often includes anti-inflammatory drugs, immune system suppressors, antibiotics, and biologics, which target specific pathways in the inflammatory process. In some cases, surgery may be necessary to remove damaged portions of the digestive tract.
Over the past ten years, Bethany has been consistently prescribed intravenous (IV) steroids to manage her Crohn's flare-ups. This treatment approach is typically used in cases of severe flare-ups to bring severe inflammation under control quickly. They work by suppressing the immune system and reducing the production of inflammatory chemicals in the body, helping to reduce swelling, pain, and tissue damage. This is crucial in preventing further complications, such as intestinal perforation and abscesses, and providing rapid relief from severe symptoms such as intense abdominal pain, diarrhoea, and rectal bleeding in Crohn's patients.
However, using potent steroids for almost a decade has resulted in severe consequences, as Bethany has now developed a dependency on them.
In 2023, Bethany was diagnosed with Adrenal Insufficiency, a condition where the adrenal glands do not produce enough steroid hormones. This condition is a direct consequence of prolonged steroid use. When external steroids are used over a long period, the body's adrenal glands reduce or cease their production of natural steroids (cortisol) due to feedback inhibition. This can lead to chronic tiredness and muscle weakness due to insufficient cortisol levels, unintended weight loss and loss of appetite, and low blood sugar and pressure levels, leading to dizziness, confusion, and fainting spells.
Bethany's prolonged use of steroids also led to the diagnosis of Osteopenia, a condition characterised by lower-than-normal bone density, which can progress to osteoporosis if not managed. Steroids interfere with bone remodelling, reducing bone formation and increasing bone resorption. This leads to an increased risk of fractures and breaks from minor injuries, chronic back pain, and the potential for spinal deformities. Bethany is particularly concerned about this because of her ankylosing spondylitis and bilateral sacroiliitis.
Having dealt with health problems for most of her life (as she was also diagnosed with Asthma in childhood), it is therefore no surprise that mental health has also been a significant aspect of Bethany's journey. In 2018, she received diagnoses of anxiety and depression and has been navigating the emotional toll of chronic illness ever since. Furthermore, in 2024, she was diagnosed with Chronic Pain Syndrome as a result of medical trauma, adding another layer to her health challenges.
In July 2022, Bethany's life took a dramatic turn when she faced her most significant health obstacle yet, which resulted in emergency life-saving surgery.
She prefaces this story by saying, "I have been quite lucky with my two main illnesses - Crohn's disease and AS because, for the most part, they have behaved." Despite this, she has always struggled to find medications that adequately manage her symptoms, meaning she has had to change medications frequently and endure many subsequent flare-ups.
Almost two years ago to the day, Bethany experienced a severe Crohn's flare-up that left her in excruciating pain. She found herself making tearful calls to her IBD nurse every day, seeking relief and support. This ultimately led to a hospital admission, where she was initially discharged with a treatment plan. However, despite this, her condition deteriorated rapidly, requiring emergency stoma surgery to save her life.
“I was in so much pain when the surgeons informed me that I would need stoma surgery in the next few days to save my life. I didn't have much time to prepare, and it's something I never thought would happen to me.”
A stoma is an opening on the abdomen created through surgery to allow waste to bypass the damaged part of the digestive system. During the surgery, a portion of the small or large intestine is brought to the surface of the abdomen to form the stoma, and waste is collected in an external bag attached to it.
Unfortunately, however, Bethany experienced a series of complications. Immediately following the surgery, she developed an ileus, a condition characterised by the malfunctioning of the intestines, leading to a painful blockage. This marked the beginning of a challenging post-surgery journey for her. Subsequently, she encountered several additional health issues, necessitating a further surgical procedure to reconstruct her stoma. Amidst these challenges, Bethany also grappled with various infections, which extended her hospital stay to three months.
Bethany post stoma surgery.
“I made an Instagram account and connected with so many people who kept me going. I would tell others that if they are struggling, it’s always better to reach out rather than bottle it up. I used to do this and really struggled in the hospital by shutting myself off, but I needed people more than ever.”
During this challenging period, Bethany found solace in creating an Instagram, as well as other social media accounts, where she could connect with a supportive community. "I made an Instagram account and connected with so many people who kept me going," she says. This online platform became an essential source of encouragement and solidarity, particularly during her most difficult moments whilst in hospital.
One of the most impactful connections she made was with another young woman named Ella, whom she met through a Facebook group for individuals with Crohn's and Colitis. Their bond was forged through shared experiences of facing similar health challenges, as they both underwent emergency stoma surgery at the same time. This shared experience created a profound connection between them, and they spoke every day for six months, providing each other invaluable emotional support, a sense of companionship, and understanding that only someone going through the same ordeal could provide. They shared their fears, frustrations, and triumphs, offering empathy, understanding, and encouragement to one another. This friendship became a beacon of hope and strength for Bethany as she navigated her recovery. Their conversations provided invaluable emotional support and served as a lifeline during some of the darkest moments of their respective journeys.
Tragically, Ella passed away from cancer not long after their surgeries. The loss was absolutely devastating for Bethany, leaving a profound impact on her. Despite this heartbreaking outcome, their friendship during those six months gave Bethany immense support and showed her the power of human connection in times of hardship. There isn't a day that goes by when Bethany doesn't think of her wonderful friend and is grateful for the impact she had on her.
Three months later, following her initial discharge after her stoma surgery, Bethany's journey took another distressing turn as she found herself grappling with excruciating pain caused by her stoma. Although stomas are not typically painful, the intensity of her discomfort led her to rely heavily on potent opioids to manage the day-to-day challenges. Consequently, Bethany underwent a series of rigorous tests, which eventually revealed a troubling revelation: her Crohn's Disease had spread to her stoma. This unexpected development added a new layer of complexity to her medical condition and required a comprehensive reevaluation of her treatment plan.
Following this diagnosis, it was determined that Bethany needed a reversal procedure to remove the stoma and the affected part of her intestine. Although she had a scheduled date for the reversal, her plans were unexpectedly disrupted when she was rushed back to the hospital due to a severe and sudden intestinal blockage. Because of the urgency of her condition, her surgeon performed an emergency reversal, which involved not only reversing the stoma but also removing parts of her small and large bowel, as well as her appendix.
Unfortunately, Bethany's medical journey continued to be filled with complications even after the reversal and resection surgeries. Shortly after, she developed an abscess in her stomach, a painful and potentially dangerous complication that required immediate attention. This led to another surgery to address the abscess and an additional procedure due to unforeseen complications.
During this challenging time, Bethany's health deteriorated rapidly, leading to intensive care unit (ICU) admissions on two separate occasions. Her condition was further complicated by a variety of infections, including sepsis and urinary tract infections (UTIs). To support her weakened state, Bethany needed blood transfusions and had to be nourished through total parenteral nutrition (TPN), a method of delivering nutrients directly into the bloodstream.
“I have had to come to terms with the fact that having these illnesses means your health and life can change in an instant.”
There were many moments during this challenging period in Bethany's life when she thought she might not make it through. Thankfully, she did and has worked hard to create a life for herself. However, the impact of these health battles, as well as the loss of a close friend, on Bethany's physical and mental health has been profound. Extended hospital stays, severe pain, and life-threatening complications led to a significant decline in her mental well-being. "I was eventually given antidepressants and counselling, which saved me," she reveals, but her story is undoubtedly a reminder of the importance of perseverance and resilience in navigating life's uncertainties.
Today, Bethany continues to draw strength for her continued recovery through many different outlets.
“When things are tough, my family and friends bring me joy. I also find happiness in anything crafty, going on walks, and having self-care days.”
One of the ways Bethany finds comfort and joy is in the unwavering support of her family and friends. Their presence reassures her and reminds her of the love and strength surrounding her, providing a solid foundation upon which she can build her resilience. The warmth and encouragement she receives from her loved ones act as a constant source of motivation and solace, especially during difficult times.
In addition to the emotional support from her social circle, Bethany has discovered a profound passion for creative pursuits. She finds fulfilment in engaging with various craft activities and these creative endeavours serve as a therapeutic outlet for self-expression and relaxation, allowing her to channel her emotions and thoughts into tangible forms. The process of creating something brings her immense satisfaction and a sense of accomplishment, further enhancing her overall well-being.
Bethany also cherishes simple pleasures that contribute significantly to her sense of peace and balance. She enjoys walking in nature, where the serene environment helps her to clear her mind and connect with the natural world. The beauty and tranquillity of the outdoors provide her with a respite from the demands of daily life, offering moments of reflection and calm. Moreover, Bethany dedicates time to self-care practices, which are essential for her physical and mental rejuvenation.
These combined elements of supportive relationships, creative expression, and mindful relaxation form the pillars of Bethany's approach to handling life's challenges. They empower her to navigate through difficulties with grace and fortitude, ensuring she remains grounded and resilient whilst dealing with the challenges from her chronic conditions.
"Just six months ago, I never thought I'd work again, having almost lost my life multiple times. I never imagined I'd even be here.”
Bethany has also achieved remarkable milestones in her academic and professional life. Despite facing numerous obstacles, she is currently in her fourth year at Open University, where she is dedicated to pursuing a degree in psychology. This journey stands as a testament to her incredible resilience and unwavering determination. Furthermore, she has recently secured a job as a healthcare support worker in the community, a role that holds special significance for her aspirations. Bethany's experiences in the hospital have deeply inspired her to pursue a career in nursing. This newfound sense of purpose is a powerful motivator, compelling her to strive to make a positive difference in the lives of others.
“If I could write a note of hope to my younger self I would say: appreciate life and all the small things. You never know when life or health will be taken away from you. We often get caught up in worrying about the future and dwelling on the past, instead of living in the now. Remember, it's called the present for a reason—because life is a gift.”
Reflecting on her journey, Bethany emphasises the importance of appreciating life and cherishing every moment. In her note of hope, she encourages others to embrace the present, reminding them that life is precious. Moreover, she advocates for open communication and reaching out for support during the struggle. Bethany acknowledges the transformative power of connection and community, recognising that vulnerability and seeking help are signs of strength, not weakness. Through her resilience and wisdom, Bethany inspires others to embrace hope, resilience, and the inherent beauty of life's journey.
Thank you Bethany for sharing your inspiring story for the 'A Note of Hope' project.
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