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ANONYMOUS’S PERSONAL STORY

I felt I needed to write something as for years I have had mild IBS, I learnt from the age of 16 (now 28) exactly what triggered it, did all the tai chi, yoga, aromatherapy courses incase stress was an issue and had always managed it very well and it never affected my quality of life. Until now, I have recently been diagnosed with severe IBS triggered by an unknown virus, I may also have endemetriosis (I am waiting for the referral to gynae at the moment) and also have had underlying overactive bladder syndrome (which was mistakingly diagnosed over the years as UTIS).
Unfortunately this unknown virus triggered acid reflux and persistent vomiting on a daily basis for months, lost a huge amount of weight (Low Bmi of 17) and couldn’t eat, apparently my gastro consultant confirmed that unfortunately this is something that can happen at the severe end of the scale for IBS which isn’t mentioned on this site and I suppose for good reason, if you’re vomiting you must see a doctor and must have the dreaded endoscopy and colonoscopy (I’ll be honest, they’re not as bad as they sound they’re going to be, infact for the endoscopy they spray you’re throat with a rather nice banana tasting anaesthetic) . I have not properly recovered from the acid reflux despite antacids but had huge improvement and after 7 months off work I’m back, had a few sick days during the return to work (it’s physically impossible for me to do anything at all when I have a flare up of both the bowel and bladder, the pain and exhaustion is too much) , I have to have gaviscon after meals regularly and on the very difficult low fodmap diet (it really isn’t as easy as it sounds), due to ongoing symptoms of the possible endemetriosis I am unable to reintroduce foods yet, currently at 12 weeks, but I started it and I’m not putting myself through it again so hoping symptoms will ease next week or two so I can start reintroduction, however I know that since this virus fizzy drinks, caffeine, lactose, wheat, gluten upset my acid reflux, to the point of vomiting, aswell as upsetting the bowel and causing severe abdominal pain. (the IBS was so severe they urgently queried Crohns, Colitis, Stomach Ulcers and Coeliac disease – all have been confirmed negative)
Unfortunately I will always now have this severe type of IBS, even though it used to be mild, it looks like that virus has just made me more sensitive to more things and there’s no way of fixing that. I just have to live with it. My quality of life since this random virus hit me has gone downhill very dramatically as I always knew what my body could tolerate, now I have to relearn it all whilst juggling a full time job and bills and family life and a relationship which is quite a tough thing to do. I’m exhausted every day, have pain every day. Obviously I’m on anti anxiety medication to help me sleep as this has been a huge lifestyle change requiring ongoing management, but I’m blessed to have so many supportive people in my life, and luckily I work in a hospital so all my work colleagues are very empathetic as they understand these conditions. I would say diet plays a huge part in the management of IBS and I would not be back in work if it wasn’t for the FODMAP diet, they gave me so many medicines for IBS but all they did was loosen my bowel more so my bowels ended up opening 20 times a day, so definitely diet for me restored some of my health and hopefully gradually my quality of life will improve, but I must stress to people the importance in keeping in good contact with your gp, any consultant you are under (and be very honest with them as embarrassing as some issues can be) and do not try a radical diet without a dietitians advice and guidance (there’s a lot more they do than just simply tell you a diet to go on) and I wanted to write something, incase anyone else was going through something as severe as I did and having to make such drastic immediate changes in their life, you’re not alone.

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