Seven years of hell...my Fructose Malabsorption Journey

In 2003, just before I went to the US for the first time with DH, I had a sudden onset of Irritable Bowel Syndrome (IBS) without any warning at all. It made the trip I'd been looking forward to for so long, very difficult. Over the next few years I was able to manage it, but this condition really should be called "Unpredictable Bowel Syndrome". It's painful and embarrassing. It made going to work difficult. It meant eating out was almost impossible. It made driving long distances, or any sort of travel, just about impossible. However, I was still able to visit my elder daughter to spend time with her and my grandchildren. I managed a second trip to the US with my husband; and a third with my younger daughter ... but neither of those trips was a whole lot of fun. Then in October 2009 all hell broke loose when I had to have my gall bladder removed in an emergency operation after several unbelievably painful attacks. This was followed by further surgery in December 2009 to repair an enterocoele which was caused by the violent vomiting during that final gall bladder attack. The surgeons told me my IBS symptoms might become worse, but nobody could have prepared me for what followed. Over the next 2 years my symptoms became so bad that I was housebound. Thankfully I had retired - which was just as well as there is no way I could have been working during this time. I couldn't even make it to a supermarket to do the shopping. I wasn't able to do heavy housework. I couldn't walk 200m out the back to check my animals. I couldn't confidently meet the man who delivered stock feed to our property. I literally couldn't leave the house! The very worst thing for me was that I didn't get to see my family or grandchildren very often. My daughter & I organised get togethers in Melbourne which were always fun, but to be able to manage the long drive etc I had to take Imodium and the side effects of taking that rotten stuff were not at all pleasant. In October 2010 I'd had enough!! I was severely depressed, even suicidal. It was time to find some courage, make an appointment with a gastro enterologist and try to find out what was wrong with me. I'd put it off for a long time because I was terrified about the invasive procedures I knew would need to be done, but I was now in a dark place with no quality of life. I had to wait nine weeks for that first appointment and the GI man said those two words I'd been dreading ... 'gastroscopy' and 'colonoscopy'. It was another 5-week wait for the procedures to be done. They were both negative and I was devastated. Plunged again into a reactive depression, I'd been hoping for a diagnosis of Coeliac Disease - or even bowel cancer would have been a relief. At least there would have been a diagnosis, I could have been getting some sort of treatment, there would have been some hope in my life ~ instead I was still undiagnosed, still terribly sick. My symptoms were profound. Then my daughter told me about a lady she'd spoken with who had told her about Fructose Malabsorption ... you can read about it here: http://shepherdworks.com.au/disease-information/fructose-malabsorption I spent hours & hours: weeks & weeks researching this condition, learning as much about it as I could. Trying to understand it. Finally, a small window of hope. The more I read, the more I was convinced that this was what was wrong with me. Frustrated by the long timeframes waiting for medical appointments, I decided to be pro-active and organised for myself to have a hydrogen breath test done; and in the meantime put myself on the very strict diet required prior to performing the test. The first 7-10 days on this diet were hard. I almost gave up hope again, thinking that I was completely on the wrong track but now I know that, during those first days, I was in detox melt down! Thankfully, I persevered with the diet and the fructose malabsorption test was positive. Outwardly, I was cautiously optimistic - but inside I was ecstatic!!! I was totally convinced that I'd finally got an answer - one which Dr. Natalya & I had worked out for ourselves (NOT the medical people I'd spent months and weeks and hundreds & hundreds of dollars on). It's now been seven weeks since I began the Low FODMAP diet and the worst of my symptoms are gone! I have a life again! I've spent almost a whole day in the car driving to see my daughter, son-in-law and grandchildren! I can do most things I want to do. I am still not 100% well - I have nausea, bloating and other intestinal symptoms, but it's early days still. I don't have a lot of energy ... but I AM getting better! If this is as good as it gets, I don't mind. I have a life again. Low FODMAP diet info here: http://shepherdworks.com.au/disease-information/low-fodmap-diet Australia is a leader in Fructose Malabsorption research. We also utilise hydrogen breath testing far in advance of most other countries. Shepherd Works is recognised as a leading world expert in the treatment and management of a group of conditions (which include Coeliac Disease and Fructose Malabsorption) more widely known under the Irritable Bowel Syndrome spectrum. IBS is now more clearly defined. It's better understood. There is a lot of information available about Fructose Malabsorption. It can be hard to understand, confusing and inconsistent. It takes some sorting through - don't give up. There are food lists to help you out, but remember that individuals will have different symptoms and different levels of tolerance to different fructose/fructan containing foods. Fructans are chains of fructose molecules that terminate in a glucose molecule. They are the nasties in many veggies and wheat, spelt, kamut and brown rice (not white rice). It's a matter of working out what's best for you. What you can (but even more importantly!) what you can't eat. A specialist dietician can help you sort through it all. I see one at Shepherd Works and she has been fantastic. As a general rule, corn (NOT high fructose corn syrup ~ HFCS) and white rice are well tolerated. Wheat products are not, because wheat contains fructans. Oats are also OK. Make sure their content is 100% ... learn to read labels :) Many processed foods contain onion, apple and/or pear juice additives (for flavour). These are a huge no-no! Most fruits and many vegetables contain fructose/fructans, but there are others which don't. If you search for low fructose foods you'll find enough to keep you from starving. LOL Finally, I blogged my experience in the hope of helping at least one other person ... but please remember that I have no formal training ... so contact someone who does and I'm sure they will be able to help even further.