BRIGITTE'S PERSONAL STORY

August 12, 2016 Gastroparesis

7 years ago I had surgery to fix a hiatus hernia. Straight away I was unwell and within 3 months I went back to the surgeon complaining of problems with my bowel. I was told it was because I was still recovering from my operation. the next 5 years were the worst years of my life. I was always sick either vomiting or being on the toilet up to 20 times a day, for days at a time with an overactive bowel. I was given so many diagnosis and given so many different diets to try I was even treated like I was a hypochondriac. I had tried to tell several drs I didnt think my stomach worked. I gained lots of weight my face was always swollen and my stomach was always distended. One day I started burping disgusting burps. It was so embarrasing I didnt want to be around people. I finally begged a dr to test if my stomach was working. The next week my world changed forever I was told I had gastroparesis with zero motility. The Dr said my vegus nerve had been cut when I had my hernia op. My condition got so bad that after losing 30kgs I had to have a PEJ inserted to bypass my stomach straight into my intestine. I am now hooked up to a machine 9 hrs a day to get nurtrician. I can no longer sleep lying down incase I aspirate. I can only have 1 coffee or a few iceblocks in a day nothing else or I end up in hospital. I will never be able to eat food again. The damage is spreading to my bowel and I have to take laxatives daily to help my bowel to work. I spend weeks at a time in hospital, I can no longer swim, im in pain a lot I take lots of medication and I am losing my hair. My consultant at the hospital says he doesnt know how this will progress as hes never come across damage to the vagus nerve due to surgery. I wish I had known about this condition years before so I could have learnt more about it as it progressed. 18 months on, I am now running a charity to feed people in the community who are struggling. I wake up each day and remind myself im lucky im alive and the feeding tube is just part of my life now. I try to fit as much into every day as I can before I have to hook up to the machine again. It can sometimes be 20 hours a day. I have a backpack to put my portable machine in and I am always looking forward to the day that medical science is able to fix me. I am not confident enough to travel yet but im hopeing I might be able to vist my son in Australia next year. Its best to find out as much as you possibly can about this condition and learn to live with it the best way that you can. I dont think my condition can be fixed but you should research every option possible for you to make your life more enjoyable

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