IBD experts on living with a stoma and J-pouch
What if your dietitian truly understood life with a stoma or J-pouch first-hand?
In this insightful interview, two IBD experts share not only their clinical expertise but their own lived experience. Jess Upton has a permanent ileostomy and Clemmie Oliver has a J-pouch.
Jess Upton, IBD Dietitian
The Good Bowel Company: Hi Jess, can you tell me about yourself and your stoma surgery?
Jess Upton: I have lived with IBD for 24 years and had a temporary stoma in 2009, secondary to Crohn’s disease, however I never fully achieved IBD remission. In 2021 I developed IBD-related rectal cancer, which resulted in me having a permanent ileostomy.
I am a dietitian working in the NHS and private sector. I have a specialist interest in nutrition for stomas which came about due to my own experience with a stoma, but also because, as the evidence suggests, very few patients receive dietary advice following surgery, which I have seen can result in nutritional deficiencies and poor quality of life. I am very passionate to try and support stoma patients nutritionally to allow them to live life to the full.
When leaving professional care how important is tracking meals, hydration, peristomal skin health and stoma output?
Whilst I don’t feel people should always be ‘tracking’ meals as this can become obsessive, some personal monitoring of dietary intake, hydration and the impact on stoma output and peristomal skin health is advised. It can help people understand their tolerance to foods and how this impacts stoma output, reduce the risk of dehydration and gain autonomy over their stoma care, which ultimately allows people to live life with a stoma, rather than a stoma ruling their life.
What’s one piece of advice you would give someone who is waiting for elective surgery or has had emergency surgery?
Stoma adjustment takes time and some days feel like the end of the world, but it does get easier. For many people, me included, having a stoma has improved my quality of life considerably and there is nothing that my stoma has stopped me from doing.
To contact Jess, follow her on @theibddietitianor visit nalmclinic.com
“The Ostomate Journal is a beautifully illustrated and informative journal which will be invaluable in supporting many people navigating the challenges of life post stoma surgery. It enables the user to feel empowered with guidance on hydration, food reintroduction and symptom management, whilst also allowing space for wellness and reflection.”
Clemmie Oliver, registered nutritionist and founder of the NALM Clinic
Thanks for speaking with us, Clemmie! Could you tell us about your NALM Clinic?
Clemmie Oliver: The Nutrition and Lifestyle Medicine (NALM) Clinic is a specialist nutrition and dietetic clinic dedicated to supporting people living with Inflammatory Bowel Disease (IBD), including Crohn’s disease, ulcerative colitis and those living with J-pouches and stomas.
The clinic was created with a mission to improve the quality of life of people living with IBD through compassionate, evidence-based care.
In what ways has having a J-pouch yourself allowed you to have a deeper understanding of patient care?
Our combination of clinical expertise and lived experience allows the team to truly understand the emotional and physical challenges that can come with navigating IBD.
What role does diet play in IBD care?
Diet is a vital piece of the puzzle in IBD care, yet many people are left feeling confused, unsupported and fearful around food. Our team provides personalised nutrition support tailored to each individual’s symptoms, medical history, lifestyle and goals.
We help patients better understand their condition and feel more confident managing it, whether someone is newly diagnosed, currently experiencing a flare, in remission, preparing for surgery or adjusting to life with a stoma or J-pouch.
Can you tell me about the services you offer?
Our services include one-to-one nutrition consultations and online courses, as well as consultancy services to IBD organisations. We work with patients to help them reduce symptoms, optimise nutritional intake, prevent nutrient deficiencies and build a healthier relationship with food without unnecessary restriction. We also support wider lifestyle factors that can influence gut health, including stress, sleep, energy levels and daily routines.
What other healthcare professionals do you work with?
In addition to providing nutrition care, we work collaboratively with gastroenterologists, psychologists and other healthcare professionals to ensure truly integrated support.
What is the lasting impact of the NALM Clinic?
Our clinic is passionate about empowering people with the knowledge, tools and confidence to take control of their health and improve their long-term wellbeing. The NALM Clinic helps people move from feeling overwhelmed and restricted to feeling informed, supported and able to live well with their IBD, J-pouch or stoma.
To contact Clemmie, visit nalmclinic.com, email clemmie@nalmclinic.com or follow on @clemmieolivernutrition