*The translation of this article in French and Portuguese has been made through machine translation and has not been edited yet. we apologise for any inaccuracies.
Read Claire Carden’s inspiring patient journey, from experiencing early symptoms, being diagnosed with ulcerative colitis at age 18, undergoing two ostomy surgeries, and ultimately finding relief from her symptoms, allowing her to pursue her interests and goals.
Ulcerative colitis is a chronic autoimmune disease affecting the large intestine where the lining of the colon becomes inflamed and develops tiny open sores or ulcers. Treatment varies depending on the severity of the disease and can range from medications and dietary restrictions to surgical procedures, such as removal of the large intestine, also known as an ostomy.
The first Saturday in October is Ostomy Awareness Day, a global celebration of ostomates and a chance to raise awareness of life with a stoma. This month we spoke with Claire Carden, an ostomy patient from the USA, to gain insight into the patient’s journey.
Continue reading about:
- Getting Diagnosed with Ulcerative Colitis at age 18
- Ulcerative Colitis Treatments: Challenges and Perseverance
- Entering Adulthood with Ulcerative Colitis
- Advocating for Oneself in the Face of Ulcerative Colitis and COVID-19
- Ulcerative Colitis Support and Ostomy Community
- Finding Relief from Ulcerative Colitis Symptoms and Improving Quality of Life
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Getting Diagnosed with Ulcerative Colitis at Age 18
Living with a chronic autoimmune disease can be challenging at any age, but for Claire, it meant navigating a life-changing diagnosis at just 18 years old. Diagnosed with ulcerative colitis in her final year of high school, Claire’s world was turned upside down. Despite facing numerous obstacles along the way, Claire has not only come to terms with her condition, but she has also become an inspiration to others. As we celebrate Ostomy Awareness Day this October, we recognise the strength and resilience of Claire, who bravely shares her story to raise awareness about living with ostomy.
Claire first experienced symptoms of abdominal pain and bloody stools. After going to her paediatric doctor, she was diagnosed with haemorrhoids, with no further testing suggested. However, Claire and her parents were not convinced. She continued to experience fatigue and worsening symptoms. She was referred to a gastroenterologist who recommended a colonoscopy for further evaluation. The colonoscopy confirmed a diagnosis of ulcerative colitis.
Ulcerative Colitis Treatments: Challenges and Perseverance
Claire’s gastroenterologist prescribed oral medications including an oral steroid treatment, which is a typical first line of treatment for newly diagnosed ulcerative colitis patients. When the steroids and other oral ulcerative colitis medications were not effective at controlling her symptoms, the next step was to incorporate a biologic treatment. Although still experiencing symptoms, she continued the treatment plan and managed to graduate from high school.
Upon graduation, Claire was thrilled to be appointed as a counsellor at summer camp. She arrived at camp for the summer persevering through her continuing symptoms, but after just two weeks she returned home. An intense flare-up ensued where her main symptom of bleeding worsened to the point of her losing consciousness and being admitted to the hospital. The doctors assessed that Claire had lost a third of her blood volume and needed an emergency transfusion.
Her gastroenterologist determined she was allergic to her current biologic treatment and opted to switch her ulcerative colitis medication to a different biologic treatment. She was then discharged from the hospital only to return the very next day, passing out from additional loss of blood and overall worsening symptoms. After one week in hospital, she returned home for the remainder of the summer. Sticking to a diet of nutrition shakes, white rice, and soup, her body still wasn’t absorbing nutrients from the food. Her mother, a professional chef, felt especially helpless when she was unable to help nourish her daughter.
Entering Adulthood with Ulcerative Colitis
Over the summer, Clare continued with infusion treatments in the hopes that after each round some relief would come. However, nothing improved, and by September Claire was back in hospital on IV medications to control her worsening ulcerative colitis symptoms and malnutrition. Claire’s symptoms persisted and unfortunately, her condition was further diagnosed as refractory, or resistant to all medications. Finally, after having what felt like countless tests, during her hospital stay, she had a colonoscopy that determined she needed immediate ostomy surgery to remove her large intestine.
Claire’s ordeal ensued during the COVID-19 pandemic which was especially difficult as the restrictions in place at the time limited her ability to have visitors while hospitalised. Although still in her teenage years, at age 18, in the US Claire was considered an adult. Therefore, Claire was admitted to the adult section of the hospital rather than paediatric section for the first time in her life. She describes feeling a sort of culture shock of being alone in the hospital, treated for the first time as an adult. “In the paediatric ward it’s quiet, there are therapy dogs, and happy pictures on the walls, nurses are smiling and check on young patients more often, taking care that the noises of machines are not too agitating. But in the adult ward, it was lonely, loud and busy. To top it off my parents’ visits were extremely restricted. I had to advocate for myself.” Claire’s additional diagnoses of autism and anxiety did not help matters either. Being just months into adulthood this was a difficult adjustment.
On the bright side, after the ostomy surgery Clare immediately felt relief. After returning home from hospital, she was unsure at the time if she would have reversal surgery or commit to having a colostomy bag and a permanent ostomy. Her doctors advised her to recover for up to 6 months and then see how she felt at that point to further discuss her options of reversal surgery.
Advocating for Oneself in the Face of Ulcerative Colitis and COVID-19
During this period Claire began to have symptoms of bleeding from the portion of the rectum left in her body after surgery in case of future ostomy reversal. The excessive bleeding led to needing more blood transfusions as well as experiencing episodes of fatigue and intense pain. Acting as her own advocate, she spoke to her surgeon about permanent ostomy surgery or removal of the remainder of her colon. Her surgeon agreed that in her case since all the medications they had tried were not successful, this was indeed the best option. In January 2022, she underwent a second ostomy surgery. This time, due to continuing COVID-19 restrictions her parents were not allowed to visit and she was recovering alone at the hospital for an entire week.
Since then, Claire says she has been “lucky to have no issues with scar tissue, blockages or dietary restrictions as some patients may experience.”
At the time of her first ostomy surgery, Claire and her family thought she would eventually have a reversal. Leading up to the second surgery she was more aware of the risks and did a lot of research leading up to the procedure. Claire describes herself as “a decisive person, once I decide to do something I just go for it and deal with consequences later.” Her parents were apprehensive, more concerned about the long-term effects of Claire deciding to have a permanent ostomy and what that would mean for the rest of her life.
Claire’s bravery in the face of her medical ordeal at such a young age is inspiring. She continues to find the positives in her experience, “My social anxiety has improved and I’m able to advocate more for others now that I’m not experiencing so many debilitating symptoms.”
Ulcerative Colitis Support and Ostomy Community
When it comes to support for uncommon illnesses, Claire credits online friendships with others who have digestive disorders and ostomies as a saving grace to dealing with a lifelong diagnosis. Girls With Guts has been instrumental in fostering friendships and support for Claire on her ostomy journey. Girls With Guts is a support group community of women with inflammatory bowel disease (IBD) and ostomies. Their resources empower women with the tools and support they need to navigate life with IBD.
Claire is straightforward with her advice for others who may be facing life with an ostomy. “Always look for a solution. Everyone is so different with their ostomy journey from appliances to dietary restrictions to allergies and medications. Many people are not educated on the risks, read about them. Reach out to companies, they will send you free samples of supplies to try and then you can decide what is right for you. Skin allergies are a big issue for a lot of people so it’s good to try different materials and see what works for you. Talk to wound and ostomy care nurses, support groups online, and don’t be afraid to ask questions. Reach out to the ostomy community, they are more than willing to help. Don’t let the fear of the unknown hold you back. You have already been through so much; it doesn’t hurt to try something that has even the smallest chance of relieving your symptoms.”
Finding Relief from Ulcerative Colitis Symptoms and Improving Quality of Life
Ulcerative colitis symptoms and medications are a thing of the past for Claire, as the disease is technically out of her body so, unlike other digestive disorders such as Crohn’s disease, ulcerative colitis will not return. Claire is not overly restrictive in her diet, as it’s no longer painful to eat. “It can be a challenge to figure out food for nourishment though, as less of a digestive tract means less nutrients can be absorbed.”, Claire explains. “I was always weak and fatigued before the ostomy, now I have more energy and have time to explore new interests.” Claire has many interests and hobbies from knitting and sewing to cooking. Food is something she enjoys experimenting with and exploring. She mentions that she wishes there was more research available on how food affects those with ostomies.
She is always on the lookout for new innovations in ostomies. Now Claire attends The Royal Central School of Speech and Drama in London and enjoys being abroad. “In the UK there are different supplies and variations of ostomy equipment. I look forward to attending school healthy and full of energy.”
Claire’s journey demonstrates her strength and determination to find relief from her symptoms. She has actively advocated for herself and made difficult decisions to improve her quality of life. Through it all, Claire’s resilience shines, showing the power of perseverance in the face of adversity.
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