# Gluten free has helped me



## SophieUK (Dec 18, 2000)

Like many sufferers, my IBS began with a severe bout of food poisoning. One night when I was 12 I woke up to find myself vomiting all over the bedclothes. I got up to go vomit some more, and then went back to bed and managed to get to sleep. However, when I woke up in the morning things had got worse. Although my stomach felt OK, I was so ill that I barely realised I had suffered with diarrhoea during the night and stained the bedclothes. I went to see my parents to tell them I was feeling much better and immediately had to go vomit.The whole of the next day I had to lie on a bin bag to prevent my diarrhoea staining the bed sheet, whilst simultaneously vomiting into a washing up bowl. I am sure you are enjoying reading this as much as I enjoyed participating in it.Although I felt better after two or three days, my stomach has never really recovered. Over the next few years I began to suffer from frequent stomach aches, and my digestion was often upset with diarrhoea or constipation. I was far too embarrassed to tell anyone about it.When I had a major attack, as opposed to the more frequent grind of stomach pain and intestinal spasms, I had about 40 minutes of really intense stomach pain with diarrhoea. The pain can be so bad that Iï¿½m sweating and shaking, and once every episode is over Iï¿½m just glad to have survived it.The worst timeMy absolute worst period of living with IBS was when I started my first proper job with a small publishing company. The work was good, the people were very nice, and my IBS was gradually getting worse and worse. In the past I had always had time off from my IBS, periods of time where I would feel normal and could forget about my problems for a while. This ï¿½vacationï¿½ time disappeared in my new job, and I began to feel pain every day, all day.Sometimes I would be sitting at my desk and feel huge, horrible spasms run through my gut, and it would be all I could do to keep sitting there. Most times I would just get myself through the day and then go home and collapse with a heating pad.It was so wearing to be in pain all the time, and perhaps even more tiring was the fact that I had to pretend to be OK for work. If Iï¿½d had time off every time I felt bad I would have hardly ever gone to work. And so my only options were to go to work and pretend to be OK, or to take literally weeks of sick leave.I canï¿½t tell you how depressing it is to feel like death and have to be cheery and sociable with people. On probably my worst day ever it actually felt like someone was stabbing me in the side every two minutes, from 11.00 in the morning until 9.00 at night. I sat at my desk clenching my fist and gritting my teeth to get through it.Looking back, I probably should at least have taken some time off for that day, but I told myself that I was saving my sick days up for when I felt really bad. Iï¿½m not quite sure how sick I thought I had to get before I deserved a sick day. Perhaps if my head had fallen off I would have taken an afternoon.There was another memorable day when I got up, pooped my pants, cleaned myself up, got dressed and went to work, pretending to be anyone other me. How was I expected to live like this?Eventually, I couldnï¿½t cope anymore. I was tired, in pain, and the only people I could confide in were my parents. At this stage none of my friends knew I had IBS because I was too embarrassed to tell them, and anyway I had moved away from my childhood city and they were miles away.I was crying every single day, and it felt like a struggle just to get up and breathe. So, feeling very pathetic, after only four months in my job, I called my Dad in tears and asked him to come rescue me. I am very lucky to have a wonderful family, and so he drove for two and a half hours to pick me up. Seeing the doctorsMy parents had arranged a trip to the local GP, which went fine ï¿½ he was very sympathetic and agreed that I should see a specialist gastroenterologist. I had a blood test at the doctorï¿½s surgery (on my birthday), and a few days later my doctor called me to say that I had a low white blood cell count. He wasnï¿½t sure what that meant in relation to my symptoms, but for the first time in a long time I thought that there might actually be something wrong with me that they could treat. I would go the doctors again, he would give me a bottle of white blood cells to drink, I would drink it, everything would be OK again. Or perhaps not, but at least there was a chance that there was something treatable wrong with me, and at least I had a doctor trying to help me.About a week later my faithful Dad drove me to the private hospital where I would see the gastroenterologist. It was a private hospital because an appointment with an NHS doctor would have meant a wait of a month or more. The doctor was a nice enough chap, and there were no terrible tests to speak of. He did have me lie down so that he could insert his finger into my rectum, which was a charming experience, but that was about it. He took a few brief details of my symptoms and complaints, which is always fun ï¿½ I donï¿½t think many of us like discussing our personal bowel habits with doctors, but at the time I was too miserable to really care much about embarrassment.After the examination we sat together in his little office. He said that I had IBS, that I needed to avoid constipation, and that perhaps I could take a laxative. I started crying. That was all he could come up with? That was the sum total of his knowledge?I knew I had IBS, I knew that I needed to avoid constipation, and I was already taking laxatives. We were paying him hundreds of pounds for this? And he was a specialist, for goodnessï¿½ sake. Gastroenterology school, day one: the colonï¿½s connected to the stomach. Day two: constipated people need laxatives. Day three: right, youï¿½re done now, off you go. Oh no, wait, I forgot, hereï¿½s how you stick your finger up a rectum.I went back out to the car with my Dad, who of course wanted to know what the doctor had said. I told him ï¿½He thinks itï¿½s IBS!ï¿½ and started to cry. What I think doctors often misunderstand is that a diagnosis of IBS, while possibly a relief for some patients who have been worrying about cancer or rare and horrific gut diseases, is actually a life sentence for people like me who have had symptoms for years, and who have done some reading about IBS. For us, being told that ï¿½Itï¿½s just IBSï¿½ is absolutely no comfort whatever. You mean itï¿½s just a condition that causes me to spend hours doubled over in pain? Oh, itï¿½s just an illness that makes me feel like my stomachï¿½s going to explode and my intestines are going to splatter their contents all over the living room, well thatï¿½s alright then, as long as itï¿½s nothing serious doctor. Youï¿½re quite right, Iï¿½ll go away and shut up. Thank you for your time. Would you like to stick your finger up my rectum?Following the useless visit to the specialist, I stayed at home for a while longer and then went back to my job feeling just as miserable as when Iï¿½d come home. My boss and colleagues dealt with my extended absence in the traditional British way ï¿½ nobody mentioned it. I could tell that things were fairly stressed between me and my boss ï¿½ Iï¿½d taken four weeks off work with no warning, and Iï¿½d only worked there for four months in total ï¿½ but we battled on regardless, and after a while things more or less got back to normal. I was still pretty miserable, and pretty ill, but at least I seemed to be coping with the job and the IBS at the same time.I would just turn up for work and stay there, regardless of how I felt. I hated being sent to conferences or major trips out of the office because it meant that I would probably have to get up early, which would disturb my stomach, and then Iï¿½d have to get through a long day feeling dreadful, while pretending to feel fine. Sometimes I had to get up in the middle of the night (well, about 5.30AM, which is the middle of the night to any right-thinking person) to go to conferences, and then stay overnight, which gave even more potential for problems.A pointless illnessIt felt like pointless heroics. Here I was struggling manfully on, through some really tough times and a lot of pain, and for what? What was I going to have at the end of it? Nothing, except everything I had at the start of it, including the IBS.I do feel that the years spent living with IBS have had a strong influence on my personality. Iï¿½ve turned into something of a loner to avoid having to deal with people when Iï¿½m ill. I donï¿½t go to stay with friends because I know that Iï¿½ll get ill ï¿½ and even though Iï¿½ve told them about the IBS Iï¿½m sure they must think that Iï¿½m odd because I never go to see them. How on earth can you say to someone ï¿½Iï¿½m sorry, I canï¿½t come to stay because I would get unbelievably constipated, or, alternatively, I would have explosive diarrhoea in your bathroom and may well poop on your floor.ï¿½ Itï¿½s just not the type of thing people say, is it really?I sometime think of a quote from Ginger Rogers, who felt overlooked when praise was heaped on Fred Astaire. She said ï¿½I do everything that he does, only backwards and in high heels.ï¿½ Well I do everything that other people do: I got through school and university, I hold down a full-time job and clean my flat (occasionally) and cook my dinner, but I do it while being ill, and having terrible stomach aches, and not knowing whether Iï¿½ll have a bout of IBS so bad I wonï¿½t be able to walk two feet from the bathroom. Iï¿½ve done exams in pain, job interviews, driving lessons, birthdays. I do get depressed about the long list of things which my IBS has spoilt. Helping myselfOn the bright side, I have managed to find things that help reduce the symptoms, although my stomach is still very sensitive. The main thing that has helped is following a strict gluten-free diet. This is actually quite difficult, because gluten is shoved into an amazing amount of products ï¿½ everything from crisps to sausages to chocolates. However, supermarkets now provide a fairly good range of gluten-free foods, and many shops now have labels showing whether a product has gluten in it. The diet does get a bit dull sometimes and I miss things like pizza, but it is better than being in pain. I have now limited the major attacks to perhaps one every two months, and the minor symptoms happen less often as well.I have also set up a website for IBS sufferers, to chronicle peopleï¿½s personal experiences with the condition and help people feel less alone. It is called IBS Tales ( IBS Tales ) and it now has hundreds of stories from people who are suffering from IBS, as well as people who have found ways to reduce their symptoms. Iï¿½ve had a lot of positive feedback from people who say they site has made them feel that their symptoms are not ï¿½all in their headsï¿½ and that they should not be ashamed of them.


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