Emilie Cullum, a mother-of-three from the UK, faces a critical timeline with an estimated year to live after a rare gastric condition caused her stomach to stop working, dropping her weight to just over four stone, The Independent reported.
The illness struck overnight in November 2024 when Ms Cullum vomited her breakfast cereal, a sudden onset that preceded months of escalating symptoms, including sore ribs, acid reflux, and a painful throat. Despite seeking medical evaluation, she spent three months being told by NHS doctors that she likely had food poisoning or Crohn’s disease before a private doctor identified that her stomach had completely stopped functioning.
In Plain English: The Clinical Takeaway
- Gastric Failure: Ms Cullum’s condition represents a severe, rare failure of gastric motility where the stomach ceases to process or empty food altogether.
- Nutritional Bypass: Severe weight loss down to four stone and three pounds required bypassing the upper gastrointestinal tract via nasal and permanent feeding tubes, followed by intravenous interventions.
- Financial and Geographical Barriers: Specialized treatments such as lipids and gastric pacemakers involve funding discrepancies across the UK healthcare regions and high private costs abroad.
Tests, Tubes, and Deteriorating Health
In February 2025, diagnostic tests including swallowing chalk and a camera failed as her body rejected them, leading a specialist to inform her that her stomach was broken and required nasal tube feeding.
Because she repeatedly threw up the apparatus, she was forced to replace the nasal tube 14 times over six months, a process requiring sedation each time. By August 8, her weight plummeted to four stone and three pounds, representing a loss of half her body weight.
“I was on death’s door by then,” she told The Independent, describing episodes where she slept for three days and nearly suffered cardiac arrest. After a second medical opinion, she underwent a procedure to have a permanent feeding tube stitched into her body. While the procedure succeeded and allowed her to reach five stone five pounds, her body rejected larger amounts of feeding formula, preventing further weight recovery.
By February 2026, her heart and kidneys began to deteriorate, prompting inpatient total parenteral nutrition where nutrients were delivered directly through a cannula into her veins. Although this initial intervention worked, she subsequently suffered a major pulmonary embolism caused by blood clotting around the artery, necessitating a blood transfusion.
Hospital staff subsequently informed her and her family that the next step involved palliative care and pain management, estimating she had no longer than 18 months to live.
“It was just a shock, hearing those words. I knew something wasn’t right as the doctor and nurse came in, as well as the hospital chaplain. I thought this is not good news. I don’t think I believed it,” Ms Cullum told The Independent.
Seeking Treatment Abroad Facing UK Funding Gaps
Faced with a terminal prognosis, Ms Cullum and her family researched alternative interventions, discovering a doctor lobbying NHS England to fund gastric pacemaker treatment to shock the stomach into opening. While this procedure is available on the National Health Service in Scotland, Wales, and Northern Ireland, it remains restricted to private care in England and would still be unavailable to her due to her dangerously low weight.
Lipids treatment—a smaller intravenous nutritional bag similar to total parenteral nutrition—is available privately but lacks NHS funding, carrying a cost of £675 per day in the UK. To bypass these financial and regulatory hurdles, Ms Cullum and her family have sold their home and put her business on hold to travel to Thailand, where the same lipid treatment costs £9 a day, alongside facing a £58,000 visa bill.
| Treatment Type | Method of Delivery | Availability & Barriers |
|---|---|---|
| Nasal Feeding Tube | Inserted through nose into stomach | Required replacement 14 times due to frequent vomiting |
| Total Parenteral Nutrition (TPN) | Cannula inserted into major veins | Provided inpatient nutrition but led to pulmonary embolism risks |
| Gastric Pacemaker | Surgical device to stimulate stomach opening | Funded in Scotland, Wales, and Northern Ireland; private-only in England |
| Lipids Treatment | Targeted intravenous nutritional bags | Unfunded by NHS (£675/day privately in UK; £9/day in Thailand) |
Risks and Supervision for Advanced Nutritional Interventions
Advanced nutritional interventions such as total parenteral nutrition and surgical feeding tubes carry clinical contraindications, including risks of vascular thrombosis, pulmonary embolism, infection, and organ failure, and require strict hospital supervision by qualified gastroenterology and nutritional support teams.
Traveling With a One-Year Timeline
The family’s immediate objective is for Ms Cullum to use lipid treatment in Thailand to safely increase her body weight. If that stabilization succeeds, they intend to return to the UK to pursue a gastric pacemaker operation. However, operating against a compressed timeline with an estimated year to live, the stakes remain exceptionally high.
“It would mean everything. It would mean I get to see my children and to see them grow up a lot more. I might get to see a grandchild,” Ms Cullum told The Independent.
