(I couldn’t find a thread dedicated to IBS so making a new one). Based on my knowledge of ME I’ve always assumed IBS is some sort of disease or something where no pathology has been found yet. However when I go online the only thing I can find is “Functional Gastrointestinal Disorder” which, as someone with ME raises eyebrows. So I’m wondering what y’alls views on this are? Is IBS research possibly still in the “Fukuda stage” where it is a basket case diagnosis but there is a real disease that hasn’t been “discovered” yet in a lot of these cases?
I think IBS may have become less popular as a diagnosis with physicians, maybe because gut symptoms without any identifiable cause cover a wide spectrum. IBS is a bit like ME/CFS in being a syndrome term that covers a good number of people's clinical problems, but without clear evidence of a cause or that it is one unified process. However, whereas ME/CFS has fairly well defined features like PEM and unrefreshing sleep, IBS seems to have been used to cover all gut symptoms and so may be less useful. Some specific features for IBS like colicky pain and altered stools used to be considered diagnostic but the it seemed to be used for anything - a bit more like 'chronic fatigue' maybe. I have gut problems of no known cause, as do quite a lot of people I know. I think unexplained gut problems are probably much more common even than chronic fatigue unspecified. A bit more like low back pain - which seems to be present in about 50% of people and probably represents a universal weak point in the spinal design. A much smaller group of people probably have quite disabling gut problems - more equivalent to ME/CFS maybe. I don't know much about the clinical picture though. About twenty years ago 'functional' came in for gut problems like everything else. It may now be the popular term.
For some people there are causes, it's just difficult to work them out. My IBS started almost overnight, but it turned out it was driven by losing the ability to digest two foods, cow's milk and potato starch. The milk intolerance was easy—I get stomach ache as well as bowel symptoms—but the potato intolerance, which is much worse, really wasn't. I had three years of incontinence before I accidentally discovered the trigger. It's not a particularly common intolerance, and it wasn't suggested by the dietician as something to try excluding for a couple of weeks. There's a third trigger I still haven't discovered, but it's not a food I eat every day and the effects are liveable-with.
I’m glad you figured it out. That sounds like it would have been really stressful and tough. I permit myself to ask if you would still consider you have/had “IBS” since you found two intolerances/allergeries which were the driving force behind your symptoms? I feel like there is definitely something similar to ME/CFS going on with PI-IBS which doesn’t get better with diet.
I have always had mild anxiety and it would on occasion upset my stomach - it had a very specific trigger for me so wasn't a major issue. Then I got a nasty stomach bug that was going around where I worked in the early 2000's and never properly recovered. Shockingly (!) my GP at the time could not have cared less or been less helpful. Getting ME made it really bad. I had changed GP by then and was referred to a useless NHS dietician I also got put forward for a group CBT course which I can sum up as "try to reduce your stress" When my ME got worse (and IBS with it) I saw a private dietician who was great and recommended the low FODMAP diet, which was life changing and I have stuck with and it mostly helps. She recommended the NERVA app, which I tried but couldn't stick with doing daily and is VERY expensive, so gave up. The point of this ramble, is that for me, certain foods (onion specifically) irritate the hell out of my gut, since I had that stomach bug, which to me suggests it is some sort of post viral issue and that it might have set up some intolerances. I am aware that it gets much worse when in PEM or when very stressed, so it is mostly biological and psychological to some degree. I don't know if this is helpful?
That was the doctor's diagnosis, both before and after the intolerances were discovered, so yes—for better or worse, it's the term I use. People often manage IBS by making some dietary adjustments, and even where it doesn't solve the problem, it seems to help some.
I think this is where things get blurred. Infections can leave the gut with changes leading to specific intolerance for things like milk. Tropical infections were known to produce long term malabsorption when I was a student - tropical sprue. My own gut problems are associated with malabsorption and nocturnal pain and may have started after a visit to India.
Over-exertion/PEM causes me a cycle of gut pain, constipation and diarrhoea (among other symptoms) and certain foods cause gut pain and diarrhoea. I've never been able to interest any GP in taking these things seriously, so have no diagnosis of IBS or otherwise.
I had a brief episode of IBS (lasting between one and two months) following salmonella poisoning, some years prior to my ME onset. Then it resumed with a vengeance following the glandular fever (EBV) that coincided with (that triggered?) my ME onset. Only once I had discovered and largely eliminated the foods that I had become intolerant to and reduced activity to levels that meant I was not in near continuous PEM, did any pattern in my IBS symptoms become apparent. (This took some twenty years.) Now I only experience gut symptoms when in PEM or if I lapse in my diet. I am now fairly good at avoiding gluten, caffeine and alcohol completely, and diet triggered gut symptoms generally only occur when I eat too much sugar based food/soft drinks and/or sweets. When I experience IBS symptoms in PEM obviously this seems inherently part of my ME, but also when I experience food triggered IBS type symptoms which will usually last one to three days there is some overlap with ME/PEM in that such is usually associated with migraines, general fatigue and other non gut specific symptoms as well as involving a delay in onset of from six to twenty four hours depending on the food stuff involved. So there seem to be two threads to my IBS type symptoms, one directly linked to my ME emerging as a feature of PEM, and the other that is diet related which varies in relation to what I have eaten independent of my current ME status. However my food intolerances either began in the initial?early stages of my ME or have included new food stuffs or worsened in association with subsequent ME deterioration. Meaning that it is not clear whether they are best described as ME related symptoms or as a cooccurring distinct condition of IBS. Interestingly I had a similar pattern of urinary frequency which became an issue when in PEM or in response to diet, usually too much sugar, but then returned to normal. I had wondered if somehow PEM or food intolerances were triggering prostate swelling. This continued for most of the course of my ME, but now for around a year I have benign prostatic hyperplasia as a distinct ongoing condition requiring specific treatment.
My previous GP was helpful when I was well enough to travel in that when I went on longer trips, such as China or Antarctica in that I always had a range of migraine, anti nausea and anti diarrhoea medication. So much that I worried going through customs. Also once I identified my food intolerances he tested for Celiac’s and referred me to a community Dietician who had some useful though limited ideas. Now I am never far enough from my bed and a toilet to worry about this. My GPs though not proactive in relation to ME, have been fairly helpful when I present them with specific symptoms that they can act on, but I only ever present very edited lists. (NB I don’t think I have had a formal IBS diagnosis.)
Me neither until it developed into actual incontinence, at which point they had to rule out bowel cancer. They seemed to regard really disruptive symptoms as being a bit like biting insects in summer—something you just have to put up with if you insist on leaving the house. I've had this throughout too, linked either to PEM, carbs, or both. Blood sugar's always been fine, but if I eat refined carbs my body seems desperate to get rid of it! The reason for my abrupt onset seems to have been long-term h. pylori or the treatment for it, as the intolerances appeared shortly afterwards. Then 4 - 5 years later I got frightening dementia symptoms from severe B12 deficiency; apparently it can take a long time to become apparent, so the malabsorption may date back to about the same time as the intolerances.
