Ibs & debilitating fatigue : Hoping someone can... - IBS Network

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Ibs & debilitating fatigue

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Hoping someone can help! Bit of background, last November I had an episode (around 2 weeks) of severe lower stomach pain which painkillers wouldn’t alleviate & was accompanied by 9lb weight loss, constant nausea & extreme fatigue. I had various scans & tests all of which came back negative & was given a diagnosis of IBS, told to take buscopan and that was that. I later (in December) had a private colonoscopy as I was convinced the initial diagnosis of Ibs was incorrect. The colonoscopy confirmed IBs & biopsies taken came back clear. I had another similar episode in March although this time began with diarrhoea but had the same nausea & extreme fatigue. Fast forward to this week & again, out of the blue diarrhoea, unable to eat due to nausea, 5lb weight loss, unable to get out of bed due to extreme exhaustion & aching all over. Surely there must be more to it than IBS? The diarrhoea wasn’t even that extreme, maybe once or twice a day for the last 4 days. I intend to visit the gp this week and ask for referral to gastro for a second/third opinion. Anyone have any similar experience?

6 Replies

Based on my own experience I would suggest a comprehensive stool test. You need to be referred so I found a private clinic.

Hi there, I would also recommend a private stool test though it can be expensive. I have been seeing a nutritional therapist, the results came back for me as having a proliferation of bad bacteria and almost no good bacteria plus it showed inflamation. I'm now on a process of taking herbal antimicrobials with other gut support and have gone gluten free. I have had diarrhoea for two and a half years and suffering fatigue as well as other symptoms. Apparently the bad bacteria 'steal' your iron and B12 in particular hence the fatigue. I have started to feel some improvements which is encouraging but am just 2 weeks into an intial 6 wks of the antimicrobials, then it will be a process of replacing the good bacteria. I had scored high on dysbiosis due to being put on antibiotics for approx 5-6 years for Rosacea. They have done a lot of damage. Hope you find some answers.

My IBS was much less dramatic than yours sounds, but when it was beginning, I would get it for a couple days at a time, and they coincided with fatigue, so I thought it is worth sharing my experience just in case your health problem might be similar, though yours may have a totally different origin and need totally different treatment. I eventually self-diagnosed my underlying problem as TMJ, temporomandibular joint disorder. I'm still working on fixing it, but the IBS is pretty much gone now though not the fatigue. The cause in my case was dental injury or surgery on a front tooth, which is a typical cause although it sounds like more often TMJ results in pain in the jaw or shoulders, nearer the root of the problem. I had had throbbing and mild discomfort intermittently around the root of the tooth in question, but had assumed that was normal and to do with scarring or something. I also had had repeated fairly bad sore throats for a while as a teenager, in the mornings, which with hindsight may have been caused by TMJ, but at the time I ignored them hoping they would go away and they did. The tooth had to have surgery a few times, and I injured it a second time as an adult, which resulted in another round of surgery, and may have been when things started to really go downhill inside me. The pain and fatigue that come from TMJ (in the gut and elsewhere) are to do with the fact that one's connective tissue is pulled too tight, so it makes bits inside one push hard against other bits that don't find it comfortable being pushed on. I've read very little about the biology of it, but from personal observation it also seems to block the circulation of fluids - it was giving me oedema on hot days - and can cause little lumps in odd places - I've had one behind my right ear for years which I only recently realized was part of my connective tissue system because when I push on it, I can feel the connective tissue in my jaw moving and slackening. In my case, the connective tissue in my whole body is involved. People who have very flexible joints or are double jointed to begin with are more likely than others to get TMJ, and clicky joints can be a symptom.

Hi . Do you live in UK? Had food intolerance tests which really helped. The bloodprick test was linked to a smart device. The results were interpreted by pharmacist which is linked to nhs so you can get a referral for gastro intestinal tests for dairy egg and gluten. I screened out all potential allergens and have. It looked back. Stress is a cause of the problem. I take a drink sachet of fibregel which helps. Hope you find the info you need. Alphega pharmacy have special allergy services linked to allergy screening. The websites has icons on a map locator but you might have to check each icon pharmacy in your region for the allergy service.

Sorry to hear you've been struggling for a diagnosis. I had the same symptoms to you and constipation, fatigue and weight loss since last September. I have had IBS for years but under control and I'm lactose intolerant!! My constipation didn't respond to laxatives and colonoscopy confirmed all clear but have a 'tortuous' colon which means more twists and turns than usual. I then saw a Gastro privately but had tried gluten free before my appointment and felt better. (Blood test for coeliac was normal but had, had to go onto gluten again to have test and felt worse than ever). The gastro did a transit test to check for a slow digestive system which came back normal - more later. In the meantime Gastro referred me to a dietician, again privately ( I am not made of money. Just desperate) She got me to continue gluten free and add flaxseed to my diet and at least 2 litres of fluids daily. My constipation improved and had energy again but still having pain. My pain is on my left side where the colon is approx at a right angle!! It is bad at night and pain killers don't help. I did mention to gastro about this and that it worsened after I had been to wee!! He didn't say anything but my dietician is now considering adhesions causing a problem since I have had a number of gyny ops, 2 children and accidental cutting of bladder at the birth!! I am on Resolor from the Gyny which helps contractions in digestive transit - even though I was told it was normal and I queried the fact that 2 of the markers from transit test showed on the x-ray exactly where the pain is)!

. If this is not successful I am to try Amitriptyline (which is now approved for gut pain). If these fail then it's back to GP to investigate adhesions. I am now officially gluten intolerant so I would suggest you get checked for coeliac then while waiting for results cut gluten out of your diet to see if it helps!! I do find the flaxseed added daily in porridge and yogurt helps but only if constipation is a problem!! Check also for lactose intolerance. Try alternative milks for a while( no ice cream or cream!) I wish I could give you definite diagnosis and cure but as you can see it's not easy. This website is great support so I hope others can give you suggestions too. Good luck. Xo

Hello, this is my general response to help people find a baseline. First, go to the doctors and get yourself checked for intestinal infections, and whatever other tests they want to do. Most people find they are all clear, and that IBS is a condition brought on by our modern diet, freely accessible food, sedentary lifestyles and is usually initially set off by a GI infection or other trauma to the GI tract. Particularly for IBS-D (diarrhoea predominant), the gut becomes hypersensitive to certain triggers, and the official description is that a physical brain-gut dysfunction develops which causes the gut to over-react to very mild stimuli. This leads to inflammation, and worsening gut performance that tends to spiral out of control. Be aware that in this state you can still get new GI infections, or other GI issues that are not connected to IBS, so you need to be vigilant for this, and if concerned then visit your doctor again.

The good news is that this situation is reversible, and you need to be positive that with the correct understanding and behaviours you can get back in control of your life.

After 27 years of suffering with IBS I have found that the long-term solution that actually works for controlling it is about FOUR key topics: your vitamins, daily fasting periods, peristalsis control and toxic food additives.

You are effectively the manager of a “food nutrient extraction factory”, I know that sounds obvious, but I have found that IBS is not about medicines, but about changing the way you run the factory, and learning how to get the best performance out of it. I don’t recommend any medicines for long term use, as so far in my experience they only work in the short-term and eventually become less effective.

So after your doctor’s tests, if IBS is the diagnosis, then the first thing to sort out is your vitamins and the timing of your eating and fasting periods. An incident of food poisoning or infection can start you on a cycle that you need to make a really concerted effort to break out of. IBS causes vitamin deficiencies which are practically impossible to overcome in most people’s diets, especially because you are probably eating selectively to manage your symptoms. If you’ve not already found it, the first thing is to get familiar with the FODMAP diet, and be cutting out wheat and milk products at least, and replacing them with Gluten-Free options and lactose free milk options, and understanding which fruit and vegetables you can eat. You can gradually work off this diet as your symptoms improve. But fundamentally, your vitamin levels affect the health of your intestines, and the health of your intestines affects your vitamin absorption and your production and effectiveness of your pancreatic digestive enzymes; it is a vicious circle that you have to break.

So, get some really good, expensive, multi-vitamins (ideally constituted for your age) and take them without fail every day before your breakfast. Get a blood test for Vitamin D and get you doctor to judge your supplement level required in IU’s to get you well healthy for Vitamin D. Do not get vitamins with high calcium and magnesium content initially as certainly in large doses these minerals can mess you up as they consume your stomach acid, and magnesium particularly will give you diarrhoea. You should get enough of these minerals from your diet. If you are on the low FODMAP diet, go for all lactose free dairy products can maintain your calcium, as unfortunately the diet tends to cut out almost all of the good calcium sources.

Secondly, you should understand that your “food nutrition extraction factory” works on a batch-wise process, and not on a continuous process. So, you need to sort out your fasting periods immediately to give a clear break between batches. This is normally overlooked by GP’s, but is an absolutely essential element for resolving IBS. Your small intestine should be practically sterile, and your stomach acid along with bowel cleaning contractions during fasting (called MMC) will usually do the cleaning. But, you need to fast for this to be effective, and by that I mean, ABSOLUTELY NO eating in between meals, ideally drinking only water. Imagine that you never washed your dinner plates and just kept putting food on them all the time!, they would be filthy and full of bacteria. In your guts, this results in SIBO (Small Intestine Bacterial Overgrowth), which is apparently responsible for 85% of IBS cases, but is only one of factors that you need to address. You need to give your small intestine plenty of time free of food for cleaning and maintaining the factory. The modern scenario of have cupboards full of rich foods permanently available day and night is a modern luxury outside of human evolution. Your stomach will sort itself out when you have got control of your small intestine (although if you've got gastritis you'll need to finish a course of omeprazole first), and then your large intestine will improve later as nutrients are more efficiently absorbed from your small intestine. Furthermore, you should be able to avoid future bouts of gastritis as during the fasting periods, your stomach acid is more neutral at nearly pH 4. As a basic program, eat a good breakfast at say 7am (porridge with 50% almond milk or lactose free milk) or what suits you and then a good lunch at 12 o'clock - absolutely no food in between. After lunch, no food at all for at least 5 hours, and eat well again for your evening meal because it has got to get you through the night. Ideally, no food after 7 pm, no supper or snacks, no food or milk at all until breakfast the next day. You will feel hunger in the fasting periods, but you will not starve, and this is doing you good!, You must NOT respond to the hunger - only with water or fruit tea. This is CRITICAL. Unless you are in a very healthy GI state, a mid-morning or afternoon snack interrupts your set meal digestion, causing acidity, SIBO, and driving premature advancement of food into your colon resulting in putrid fart gases mentioned below. Importantly, when you are feeling better, do not resort to your old ways, you are still recovering as you villi repair and become more efficient, and you need to make a life-style change to have this level of discipline in your eating and continue with it. It takes a few weeks at least, and you need to persevere with this. Failing on this will undermine all of your other good works. In a couple of weeks, you should be able to be getting off the low FODMAP diet, and begin mixing back in the higher FODMAPs. However, if you feel that this is not enough and symptoms are returning then just back off on the high FODMAPs for a while, and go for the wheat free options. Some people recommend longer fasting periods, but for me the regular program above is sufficient.

If your farts really stink like something died in your guts, then this is because partially undigested proteins are making it through to your large intestine and the amino acids lysine and arginine are being metabolized by bacteria into cadaverine and putrescine which are the compounds that give the smell to rotting flesh! – do not worry that you yourself are rotting, this is just temporary, but it shows that you really need to sort your digestion out.

The third aspect of IBS is peristalsis control, also called gut motility. This is the speed at which your intestinal contractions drive food through your intestines. IBS-D can be characterized as having excessively fast gut motility or excessive peristalsis, while IBS-C is where the motility and peristalsis is too slow. If it’s too fast, then your digestive enzymes don’t have enough time to work on the food and for you to absorb the nutrients, and the food is driven prematurely into your colon which gives IBS-D. Digestive enzyme supplements are usually plant-based enzymes which work in a wider pH range than your own enzymes, and so can get to work on the food while it’s in your stomach and also during transit through your small intestine, and so boosting the work of your own pancreatic enzymes. In this case, not only are you ensuring you have sufficient enzymes working on your food, but also gaining extra time for effective enzyme and food mixing and action. I would suggest trying some multi-component digestive enzyme supplements, and take these with at least two meals a day, particularly your heaviest meals. You want them to contain at least amylases, proteases, and lipases (for starches, proteins and fats respectively), but they can also contain other enzymes such as cellulase (for tough vegetables) and betaine HCl which helps with acid production. Pancreatic enzyme production can decrease as you get older, and is also affected by stress/anxiety, vitamins, and the health of your guts. You want to be sure that undigested food does not get to your large intestine where the bad bacteria will go to town on it, causing bloating, inflammation and pain. Using enzymes for IBS-D can improve your nutrition and help you to break out of the IBS cycle.

We then need to look at controlling the your gut peristalsis rate, and this is affected by several things:

Caffeine stimulates peristalsis of the intestines and so this is negative for IBS-D, but positive for IBS-C. Between meal snacking, spicy foods, black pepper, chilli peppers, sucralose, sorbitol, black tea, coffee (and de-caffeinated coffee!), peanuts, cashew nuts, almonds, black beans also stimulate peristalsis. The general advice given for IBS is to cut down on tea/coffee stimulants, no more than 3 cups a day is the NICE guidance, but this entirely depends on whether you have IBS-D, IBS-C or a mixture of both. If you have IBS-D, you should try cutting tea/coffee out altogether, and for IBS-C you could try drinking more! You can “tune” your gut peristalsis by how much tea or coffee you should drink in a day. A mug of coffee contains about 120 mg of caffeine, there is about 50 mg in black tea, and 30 mg in the same volume of coke. The half-life for excretion of caffeine from your body is between 5 and 15 hours depending on your health. So, it can take about three days to remove it all from your body to know how you would really perform without it. For IBS-D, this is worth doing, and then re-introduce it by one cup per day (starting with tea), and then do not exceed what you determine is the optimum for you. You may only tolerate one cup of tea per day, or none at all. Acknowledging this powerful effect is very important, because even if your enzyme levels are good, and you take also take enzyme supplements, if your gut peristalsis (motility) is too fast you will still drive undigested food to your colon causing all of the usual symptoms. Be aware that, caffeine also “drives” anxiety, agitation and nervousness. If you are also suffering from stress, then coffee is definitely not helping you. If you were taking the same amount of caffeine in tablet form (e.g. with Pro-Plus) you would recognise coffee as a drug and would probably think about cutting down. A Pro-Plus caffeine tablet only contains 50 mg of caffeine (one cup of tea!), and if you were having 10 of these a day you would rightly be concerned!

Gut peristalsis is very sensitive to adrenalin. A friend of mine says that “adrenalin not used by your muscles goes to your guts” and there may be some truth to this. If you have a busy life, you are probably not coasting along on a bed of feathers, and you probably not aware of your almost constantly high adrenalin levels – that is until you start actively lowering them. Crucially, what does work, is hard exercise to burn up your adrenalin and stop it interfering with the nervous system of your guts – and this is a powerful effect. My advice is to do something every day, whatever you can manage in your busy life, it will all help. It will improve your gut motility, general health, bone strength, relieve tiredness, help you sleep better, improve your mental agility and help get your anxiety under control. To many people, exercise may seem like a waste of time, but it is equivalent to spending a bit of time sharpening an axe – it is not wasted time, but time very well spent in servicing your whole body and mind.

Closely related to this (and possibly more important is serotonin), which is a controlling hormone for your bowel, and is the target of low-dose anti-depressants used for IBS treatment that are used to raise your levels of it by inhibiting its destruction. TCA’s (tricyclic antidepressants) are used for IBS-D, and SSRI’s are used for IBS-C. It is important to have this the right way round if you choose to try the medicine route. Exercise increases your serotonin levels, but there are also two other surprising ways to do this: 1.) increase your agreeableness (avoid hostility), 2.) bright light, i.e. get outside in the daylight as much as possible and avoid dim lighting indoors.

The fourth aspect of IBS is that some food additives are quite simply toxic for you and cause direct inflammation of the colon, allergic reaction of the colon, or they are laxatives that give you diarrhoea that you didn’t realise you were eating. These are to be considered separate to the usual SIBO and mechanism that you are dealing with above:

1.) Try to seek out and eliminate “trans-fats”. These cause direct inflammation of the colon, and you will be more sensitive than most people and this confuses what is causing you trouble. Chips, hash browns, butter, doughnuts, popcorn and things cooked in cheap or old frying oil as you find in many restaurants and commercial products can give you colon pain directly through inflammation. It can take up to three or four days to recover from this inflammation, but trans-fats are bad for you in a miriad of ways (cardio-vascular and diabetes), not only by inflammation of the colon. There is evidence that as cooking oil is re-used that the trans-fats (and other compounds) increase. So, if you want fried food as a treat, do it at home with good oil at a low temperature, and use it only once. Ideally, starches should only be boiled, rather than fried.

2.) E407, or “Carrageenan” – is a food additive derived from a red seaweed, which is only present in small quantities as a thickener, but even at low levels it has been shown to be “highly inflammatory to the digestive tract” and associated with IBS, colitis and other GI diseases. There is loads of literature and objections to this substance on the internet. It is present in cheap Crème Caramels, and many other dairy and meat products. After weeks of good health, just one of these products knocks me out for 24 hours with colon bloating and pain. I have found this by trial and error several times. Food tests show that even the food grade carrageenan contains between 2 and 25% of the non-approved “degraded” carrageenan, which is colon damaging and carcinogenic. Some food agencies now prohibit this additive altogether, and it may be responsible for a lot of IBS cases. It might be found in chocolate milk, cottage cheese, cream, crème caramel, ice cream, almond milk, diary alternatives, such as vegan cheeses or non-dairy desserts, coconut milk, creamers, hemp milk, rice milk, soy milk, and particularly processed meat. It is used extensively in cheap meats and is even injected into beef joints – so always get organic or local butcher fresh good quality meat!). It may be labelled as E407 or Carrageenan, but if you’ve got IBS, consider it as highly toxic for you.

In the same category is carboxy methyl cellulose (CMC) which is more widely used in the food industry, but has similar toxicology in animal studies, giving inflammation of the colon. However, the jury is still out on CMC to its impact on humans.

I’ll also mention here mono-sodium glutamate (MSG). Clinical trials and several scientific articles connect MSG with IBS, so given the option to avoid it you should avoid it.

Also, NICE advises against the use of Aloe Vera for IBS - although I would say for the hydration of skin burns it is miraculous, so get a tube of the pure plant gel for your medicine cabinet for minor burns.

3.) E338, E339, E340, E341, E450, E451 and E452, are phosphates, diphosphates or polyphosphates as different salts. Natural phosphates are essential for life, and your body is full of organically bound phosphates, however, free ionic phosphates have several problems. Firstly, they are laxatives and will give you diarrhoea (sodium phosphate was once used to prepare patients for colonoscopies!). Secondly, they are associated with cardiovascular disease and accelerated aging. Since the 1990’s we are now exposed to twice the amount of added phosphate in foods, and this is bad. There are calls to have added phosphate labelled on products as a health warning. Particular culprits are mass produced sausages and processed ham and chicken slices (and other meats), some cheeses, and cola (both diet and normal). Always buy ham “on the bone”, which usually has no phosphate added. Personally, all phosphate additives make me ill.

4.) Aspartame and other sweeteners definitely have a negative role to play in IBS for many people. As with the other toxins above, your ability to cope with them varies on a spectrum. If you look at some of the work of K.J. Mielke, many of these additives can be allergens or “pseudoallergens” and with time you can develop a reaction to them. The best sweetener for IBS is normal table sugar (sucrose), otherwise, it’s “Stevia” which is quite a new plant based sweetener and seems to be safe for IBS.

You must remember that there are many different causes of IBS, and one person’s solution may not be another’s - because of the allergies that you may or may not have developed, plus all other factors in play.

Other points...

There is a lot of support for L-glutamine to help with repair of your small-intestinal lining; this means buying 500g of the bodybuilder powder type and having a couple of tea-spoons of this a day - one before breakfast and one just before you go to bed, and you can have this in a light cordial drink. I don’t think this is a permanent requirement, but I think can help you recover more quickly from long term issues.

I am not a fan of pro-biotics, I have never found that they actually do anything for me compared to getting control of fasting and peristalsis, although some people may disagree. However, I have had more success with pre-biotics, which is basically food for your large intestine good bacteria. This helps to strengthen the lining of your colon, and further improve your resilience to potential trigger foods and inflammation. Again, I would only use these periodically for a few weeks to help you back to a good state which you can then manage with the other good behaviours. It’s not that they do you any harm, just another thing to shop for. Pre-biotics can give a noticeable improvement in your GI comfort and performance, but don’t depend on them alone. You cannot get away with having poorly digested food in your large intestine.

I should add that although I eat bread and milk now in moderation, I am still cautious about high FODMAP fruits and tend to avoid them. The FODMAP fruit list is complicated, but an easy way to remember it is like this: "fleshy", juicy fruits are bad, i.e. (nectarines, peaches, apricots, pears, apples, plums, dates etc), but segmented fruits (oranges, mandarins etc.) and all berries are generally OK, as you are not likely to eat lots of them. Best of all is bananas which you can eat loads of. (Microwave three of them until they are mushy and put a couple of fried eggs and cheese on them is my favourite weekend breakfast!). For efficient fructose adsorption, you need glucose to be present with it in a 1:1 ratio. No enzyme will help you with your fructose adsorption from fruits with excess fructose, but what can help is trying to balance the fructose with an excess glucose fruit like banana. Bananas, figs, kiwis and pineapples have an excess of glucose over fructose, and so you can balance fruits with excess fructose. If you try using pure glucose powder, this will not travel slowly in your guts and you’ll still be left with excess fructose later on, so it is better to use bananas for the slow release of glucose to accompany the fructose. So you can experiment with this by making a fruit salad mainly composed of bananas, and small amounts of other fruits. However, be aware, that the problem with “fleshy” fruits (e.g. nectarines) is not only fructose ratio, but rather the polyols that they also contain, which can still make you ill.

I should also mention hormone changes in women can be connected with IBS, affecting the brain-gut nervous system, but being male I have no personal experience in this. Similarly, hypnosis is actually recommended by NICE as the best alternative therapy, again trying to get a grip on the nervous dysfunction. I have tried this, but for me I was just being very relaxed with your eyes shut for half an hour, and going along with the idea. However, like other therapies it concentrates on repeatedly putting lots of positive thoughts in your mind, and strategies for dealing with negativity, so I’d say it is a good complement for your psychology and anxiety, although it will not address organic issues like SIBO. But, as an example of your sub-conscious on your guts, if you have IBS-D, try taking yourself off camping for a few days in a “proper” tent. The change of living environment will slow down your gut motility into emergency mode as your mind tells your body to get everything it can from the food you eat in case you don’t have any in the future. Camping also removes you from your usual daily anxieties, and gets you more active.

Dealing with Flare-ups

First thing is, fix your SIBO as described above. If you still have SIBO symptoms, oregano oil capsules are very good, it is bactericidal, anti-inflammatory and can help with acute SIBO problems. It is not “gassy” as you may find with peppermint oil. Take some digestive enzymes, to ensure your digestion is complete. Fixing your SIBO has got to be your priority.

If you are on top of your SIBO, then a bowel toxin might hit you 5 to 8 hours later as the food gets to your large intestine. The first line of attack in this case is ibuprofen which is far more effective than paracetamol for bowel pain, and I find that 200 mg alone is enough. Second, a couple of 10 mg Buscopan will stop the cramps. If you have IBS, always have available in advance some linseed (the seeds) and natural aniseed (Star Anise), and when you are bad make the following tea: in a saucepan, add 1/2 teaspoon of linseed, ½ to 1 anise star, 1 teaspoon of sugar, a squirt of lemon juice (bottled is fine), and one mug full of water. Boil to simmer, with stirring, for 3 to 5 minutes, then sieve off the hot liquid back into the mug. This is a very effective remedy that I have used countless times, and it really does help. The reason that it helps (anecdotally) is that the “gooey” linseed extract coats the intestinal lining. There may be some truth to this, as some propose that the mechanism of bowel inflammation is a chemical attack on the mucus lining of the intestine which then allows food particles be exposed to the more delicate tissues underneath, causing inflammation. The linseed goo would provide a temporary replacement to the mucus lining, preventing further inflammation. In fact, NICE recommends oats and linseed for daily consumption for IBS patients.

A few references…

“Treatment and Management of SIBO — Taking a Dietary Approach Can Control Intestinal Fermentation and Inflammation, by Aglaée Jacob, MS, RD; Today’s Dietitian; December 2012, Vol. 14 No. 12 P. 16”.

badgut.org/information-cent...

guidelines.co.uk/gastrointe...

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