'Horrendous pain saw my skin change colour and go up five dress sizes'

'Horrendous pain saw my skin change colour and go up five dress sizes' Amandeep Kaur says she often passes out and is left drenched in sweat - but doctos have no idea why A mum has battled with pain for almost a decade which is so bad, it causes her to pass out, gain weight, and her skin changes colour - and doctors still do not know what is causing it. Amandeep Kaur started experiencing the pain out of the blue in 2017 after going out for a meal with her mum and sister. The 43-year-old, from Stoke-on-Trent, continued to suffer from issues but, despite tests, doctors could not find a diagnosis, although they suspected colitis. She described it as twisting, relentless pain that leaves her overwhelmed and unable to function. As she continues to wait for answers, Amandeep said the uncertainty has affected every part of her life — from her mental health to her career and social life — and has put strain on her relationship. Amandeep, who works in safeguarding and is a mum of two, met her partner in December 2019, but said she hid the true extent of her symptoms for the first year because she felt embarrassed discussing bowel problems early on. In the days before seeing him, she would barely eat in an attempt to avoid triggering a flare-up. On dates, she would pick at her food and make excuses, telling him she was eating “clean” or had no appetite. She said she avoided eating in front of him and often turned down invitations to go out because she was anxious about being far from a toilet. The misunderstandings led to arguments, she said, with her partner questioning whether she was depressed. At times they slept in separate rooms, which she felt made it easier to conceal what she was dealing with. "I kept it from him because it is embarrassing. You're in a new relationship and you really don't want to disclose gut issues." She avoided eating in front of her partner, worried it would trigger her symptoms, and often declined invitations to leave the house so she could stay close to a toilet. "We ended up in arguments. He was asking me if I was depressed. Why I wouldn't leave the house. We used to end up sleeping in separate rooms, but that was good because it made it easier for me to hide the symptoms," she says. "We weren't living together, so it was easier to hide my symptoms. But when I moved in with him, it was hard because I was constantly in the loo. It wasn't until I had an accident and he noticed that I had to tell him.” New research by Holland & Barrett suggests Amandeep is far from alone. The health retailer found that 90% of people said they would hide digestive issues from a new partner rather than speak openly about them. The same research said around a third (31%) would avoid eating on a first date to reduce the risk of digestive trouble, while 30% said they would choose date activities that don’t involve potential “tummy triggers”. Holland & Barrett’s report on preventative health also found that more than one in five people in Britain (22%) say they struggle with gut health or digestion. The episode that caused it in 2017 saw her skin colour change and she began to feel faint and dizzy, prompting her to head to the bathroom. She left the restaurant soon after and spent the night in agony. The next day, Amandeep collapsed at home. She said she only realised what had happened when she regained consciousness slumped over her laptop. Her sister, seeing how much pain she was in, called 999. She says she now lives with constant pain and rectal bleeding, alongside flare-ups so severe they have caused her to collapse. During the worst attacks, she says she can be drenched in sweat. Last year, she said, her sons came home to find her collapsed in the living room and her eldest had to call an ambulance. Her most recent hospital admission was in May, after 10 days of diarrhoea and vomiting. Scans showed inflammation in her intestines and lymph nodes, but she said doctors still could not tell her what was driving the illness. Amandeep said her partner’s attitude changed when he saw how serious her condition could be during a hospital admission. While he initially joked about it being “old age”, she said he has since become her biggest support, helping her through flare-ups and repeated trips to hospital. Despite multiple scans, tests and medications, Amandeep said she remains without a diagnosis. Her next step is a colonoscopy, with an appointment scheduled for July — although she said it needs to take place while she is experiencing a flare-up so doctors can see what is happening. She said the impact has been enormous. Struggling emotionally, she turned to food for comfort and by 2020 said she had gone from a size 10 to a size 20. She described bingeing on crisps, cakes, chocolate and toast, and ordering large takeaways — but said she still wouldn’t eat in front of her partner, instead waiting until he was asleep or at work. The weight gain dented her confidence, she said, leaving her avoiding photos and feeling uncomfortable in her own body. Although she has since begun losing weight, she believes the condition has also affected her friendships. Amandeep said she has sometimes lied about why she couldn’t attend events, and over time stopped being invited out as much. She said it was upsetting, but she could understand how it happened: "In the past I have lied to people about why I can't make events. I've definitely lost friends because of it. I don't always get invited to things anymore, which is a bit sad. But I understand why." Day-to-day life now involves constant preparation. Amandeep said she often sleeps on the sofa so she can make repeated trips to the bathroom without waking her partner. Whenever she leaves the house, she packs spare clothes, towels and wipes in case of accidents — something she said she used to do for her children when they were little, but now has to do for herself. She also described humiliating moments that most people never see, including accidents in her car while travelling home or going to work. There have been times, she said, when she has been parked outside work, had an accident and had to call in sick. Now she says she is determined not to let embarrassment dictate her life. She has changed her diet, including kefir and Greek yoghurt, and started using Holland & Barrett multi-seed toppings in the hope it will help ease symptoms. She has also begun rebuilding her confidence by attending Pilates classes and going to events on her own — something she says she would never have done before. Amandeep said she is speaking out so others living with unexplained bowel problems feel less isolated. She believes there should be no stigma around digestive illness, describing it as a “hidden disability” that can be draining and life-altering. And she wants anyone going through similar experiences to know they are not alone and that support is available. What is colitis? Ulcerative colitis is a long-term condition where the colon and rectum become inflamed, according to the NHS. The colon is the large intestine (bowel) and the rectum is the end of the bowel where poo is stored. Small ulcers can develop on the colon's lining, and can bleed and produce pus. Symptoms of ulcerative colitis The main symptoms of ulcerative colitis are: - recurring diarrhoea, which may contain blood, mucus or pus - tummy pain - needing to poo frequently You may also experience extreme tiredness (fatigue), loss of appetite and weight loss. The severity of the symptoms varies, depending on how much of the rectum and colon is inflamed and how severe the inflammation is. For some people, the condition has a significant impact on their everyday lives.