I have always had a complicated health history, especially with food-related issues. I started life as a premature baby and never had much interest in food, which resulted in huge battles as a child until I was around eight years old, when I began to gain weight. As I went into my teens, things worsened – first with constipation and then unknown pain. I was eventually diagnosed with IBS and diverticular disease following an emergency hospital admission at the age of 21.
“I was listed for a gastric bypass in 2014”
As time went on, my weight spiralled. It turned out I had a binge eating disorder. It took a while, but with help I was referred to my local weight management service and completed the programme twice. I opted to pursue weight-loss surgery (weighing just under 30 stone at the age of 36), was listed for a gastric bypass and went through with the surgery in September 2014.
My real incentive to pursue bariatric surgery was because I was diagnosed with PCOS/PMOS at age 13 and then type 2 diabetes at age 21. I was told the only way for me to carry a successful pregnancy (after loss) with my medical issues was to lose significant amounts of weight, and bariatric surgery promised this. Unfortunately, my complications ended up leaving me too unwell to reach my goal due to the medical advice given at the time. It is now part of why I share my story, so as to help others achieve their dream family.
The surgery was difficult and I had breathing issues in theatre, but I came through it okay. I started my new life living with a much smaller capacity stomach and began the 2/2/2 plan of fluids/puree/mash, aiming to be back on a normal diet by week seven. Unfortunately, I really struggled to manage this and kept having to revert back to a lighter diet; my first proper meal was a few days before Christmas!
“I began to suffer with pain”
Unfortunately, this was a sign of hurdles to come. I lost a huge amount of weight and became more active and confident. But then I unfortunately began to suffer with pain. It started one night suddenly after a hot meal, and never went away. I had a “bariatric candy cane”, which is a leftover, dead-end loop of intestine that was left attached to my stomach during my gastric bypass surgery. Several emergency GP clinic visits and more tests later, it was found that my bariatric candy cane was 8 cm too long and I had severe dysmotility of the oesophagus. The main issue with my candy cane being too long was that it was holding food and fluid at times, including during my Barium Swallow test. This was potentially why I was having huge issues with upper GI pain, including my poor tolerance to hot food or drinks – that’s my theory, at least.
The decision was made to monitor it and keep up diet changes. I was referred to the FODMAP clinic due to my history of IBS and diverticular issues. A stool test also found inflammation, so I was then seen by the inflammatory bowel disease (IBD) service, but was considered borderline. Lots of intolerances were found (I had already lived with allergies since a young age), so I tried to adapt to my new diet and became very anxious and depressed, afraid to eat in public. The worst day was a few days after our wedding in 2019 when I should have been enjoying life, and I was lying having a colonoscopy instead of being with my new husband.
“I could not live outside the bathroom”
Around this time, I was referred back to the Bariatric team and my dietician started to look into my comments about heat making symptoms worse – finally, someone listened! Unfortunately, others in various services kept saying it was stress and IBS, functional pain, or ED relapse (now I realise this is possibly partly true, but I knew there was more). During lockdown, I regained a small amount of weight and developed pancreatitis. The pain at one point was even linked to an ovarian cyst. I ended up having to give up work as I could not live outside the bathroom. In the end we got relocated to more suitable accommodation as I was developing more health issues, becoming more and more unwell.
Time passed and in 2025 I began to projectile vomit hot drinks. I had more tests, and the candy cane issue came up again, along with gallstones, despite me living on a low fat diet. I withdrew from treatment due to my depression.
One day I was browsing social media and saw a post by a consultant at a hospital in a nearby county. I realised my pain had changed, and I was so unwell that the duty GP the day I rang in sent me to the Surgical Assessment Unit (SAU). A duty surgeon arranged a CT scan based on my history and that of close family. The scan showed several issues of concern – one was the diverticular issues, but I now had some cystic tumours. One turned out to be of concern, on my left kidney. My husband had kidney cancer the year before so we thought “great, just have surgery and the pain would end”. Unfortunately not. Due to my health and being type 2 diabetic, surgery was not recommended.
“I’ll never forget the day I got the results!”
I shut down again emotionally. The tumour was small so a surveillance plan was suggested (while I tried to get mental health support) and we were told it was too small to be causing pain. I eventually agreed and the first scan was in January 2026. Honestly, I’ll never forget the day I got the results! I was fist-pumping and shouting as the scan report showed the real cause of the pain: a small bowel intussusception (where the bowel “telescopes” inside itself) at the point where my gastric bypass joins my bowel. I didn’t know what it all meant, but the team had worked out it was there in the previous June but barely visible. I had a job to find any information online that related to adults – lots regarding babies and dogs and cats, but no adults. Eventually, I found a study into complications of bariatric surgery in 2024, which highlighted 41 known cases. There was no other information anywhere.
“I was very lucky indeed.”
My surgeon said he had never seen anything like it. At the time, he wanted to treat the gallbladder issues first, but after more changes to pain and my pre-op assessment, they decided to treat all three issues together. There were several weeks of liquid diet preparation to make the surgery safer and taper me off my high insulin dose. For years I had been on a high carbohydrate diet to avoid all my allergens and trigger foods, so my diabetes was worsening. My surgeon warned me it was likely he would have to remove scar tissue as my bowel had probably been doing this for years (an assumption based on my pain reports). I believe he removed several inches of scar tissue in the end. Tests showed necrosis, which means the blood supply to the bowel was compromised, so I was very lucky indeed. The funny thing is, I don’t think he realises, but he was the first surgeon to see me regarding this issue and was on duty the day the ovarian cyst was found in 2020.
“The hardest bit was starting to use the bathroom again”
Surgery day came and they had hoped I would be in theatre for three or four hours. It ended up being just shy of eight hours, with three consultant surgeons operating on me via the robotic system. I ended up being transferred from recovery to ICU, and the next day was moved to level one care. I was in hospital for a total of eleven days. I think the hardest bit was starting to use the bathroom again and being afraid of the pain medication due to my complex journey, and as a result I became afraid to try my liquid meals. Goodness, the battles each mealtime were hard.
Eventually, when I was discharged I began to finally learn to eat again. I was back on solid foods in July but even now in September I still have to have days where I go back to liquids to calm the pain.
Constipation is still a huge battle day by day, as is bariatric dumping syndrome when I have to treat hypo events. I can still only eat fairly small meals and have been losing weight again (I never reached my goal after the first surgery, despite back then losing twelve stone). The same bariatric dietician is supporting me post-op. I think she’s a bit stunned over it all but is too polite to comment and has been amazing reaching out for advice to colleagues on how to proceed, as from what I understand that most professionals will never see this condition in real life.
“It has taught me a lot about my body”
I have reached out across a few social media platforms and found a half dozen sufferers around the world but no one in the UK so far. The lack of peer support and understanding is so hard. That is why I wanted to write this piece, to help others feel a bit less alone. I haven’t posted much on Bariatric support pages as it is considered a rare or very unusual condition, and I don’t want to put people off what is normally a life-changing chance to improve their lives.
“This Christmas will be very special”
My journey isn’t over yet, but it has really taught me a lot about my body and how I knew something wasn’t right and about speaking up. I am still battling depression when the pain gets bad and have been told to be prepared that it may never go. Now I am getting ready for my next surveillance scan, hoping that my tumour will be packing its bags soon if medically safe.
The best bit though, is after eleven years I can sit at the dinner table with my husband and share a meal without bolting for the bathroom or choking. We haven’t had a Christmas meal for at least seven years that hasn’t ended up like that, so this year, all going well, will be very special.
