I have been diagnosed with coeliac disease, interstitial cystitis & IBS. I've had a gastroscopy & colonoscopy.
I take pregabalin for interstitial cystitis & this is more or less under control.
The IBS is driving me up the wall! I have gas all the time I wake up belching & bloated & it hurts so bad! To the point I'm belching so much I end up throwing up. If I eat it gets worse. I'm either constipated or have diarrhea there's no In between. I'm following fodmap literally only eating hot dogs, potatoes, chicken, carrots & lacto free milk these are my only safe foods ATM. I'm taking mebervarine 3 times a day.
I've tried:
Buscopan
Peppermint oil
Peppermint tea
Simethicone
Acidophilus
Nothing seems to work. Doctor's told me there's not a pill that will fix this & to increase my activity. He's referred me back to gastro now. I've had to give up my job cause I cannot deal. Been waiting on a dietitian since August. If anyone has any ideas or suggestions that would be fab. I want my life back!!
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Stop all fizzy drinks, reduce alcohol intake, and eat small mouthful of food (very well chewed). Don't eat sweetcorn or peanuts, or any known problem foods (Brussels sprouts, baked beans etc etc).
I bought & still use a foam wedge that elevates the head of my bed. I stay up a good three hours after a meal before going to bed. My doctor told me to sleep on my right side. This is suppose to make it harder for the food to come back up. My mother (with IBS) could not tolerate artificial sweeteners. You might trial off them should you use any.
I have also been self paying to test for various vitamin & mineral deficiencies. So far I’ve found I was low on Vitamin D, B-2, copper & magnesium. My B-12 had dropped into a lower range too. I think you are more prone to deficiencies on restricted meal plans. Improving any you find should help matters.
I have actually tried all of your things from the list and none worked either plus some other things off the shelves at boots...seems like it is hard to find the magic pill
Are you following a gluten free diet? Also no artificial sweetners and limit the sugar in your diet. Also limit your portions. Not a fix but it does help.
Have you tried Senocalm ,im a fellow sufferer ,i tried everything to ease my symptoms, desperate i tried senocalm they made quite a bit of differance for me ,but we are all differant ,wishing you well,
Hello, it takes a while to sort out, but please see my general advice below. You will be better off eating fresh meat. Hot dogs are probably bad for you, particularly if they have phosphate stabilizers in.
Hello, this is my general response to help people repair and find a baseline of GI performance after addressing the factors that adversely interfere with it.
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, and is then maintained by several factors. 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 mild stimuli. This leads to insufficient residence time of food in the small intestine, resulting in nutrient rich food arriving at the colon and causing inflammation, bacterial imbalance, gas, pain 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 have other underlying 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 your life back in control.
After 27 years of suffering with IBS I have found that the long-term solution that actually works for addressing IBS 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. Imagine a chaotic factory where the raw materials keep getting added half-way through a running reactor process, where someone is randomly messing with the speed dials of the processes, where the place is never cleaned, where you don’t have the right tools (vitamins and enzymes) to do the job properly, and the occasional spanner gets thrown in too. It’s not going to work well.
So after your doctor’s tests, if IBS is the diagnosis, then 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 oats, 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.
The next thing to sort out is your vitamins. An incident of food poisoning or GI 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 if you’ve already adopted the FODMAP diet. 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 out of.
So, get some really good, multi-vitamins and take them without fail every day with your breakfast. Don’t use ones with high levels of Vitamin E on a daily basis, as in my case I found I was getting weakened skin on my hands resulting in ruptured finger blood vessels practically every day - so I keep this now well below 100% RDA (or NRV) and I’ve not had one for weeks so far. 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 doses of magnesium 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 good sources of calcium.
Secondly, you should understand that your “food nutrition extraction factory” works on a batch-wise basis, and definitely not on a continuous process. So, you need to sort out your fasting periods immediately to give a clear break between batches, and the complete processing of each batch. 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 if you never washed your dinner plates and just kept putting food on them all the time!, they would be filthy and full of bacteria and this is what happens in your small intestine. This results in SIBO (Small Intestine Bacterial Overgrowth), which is apparently responsible for 85% of IBS cases, but is really 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, and this is bad for you. 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 becomes 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 – and 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 later. Importantly, when you are feeling better, do not resort to your old ways, you are still recovering as you intestinal 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 working back the higher FODMAPs slowly into your diet. Some people recommend longer fasting periods, but for me the regular program above is sufficient without going extreme.
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. One reason for this can simply be that you have eaten more proteins than you can handle, if your gut peristalsis is too fast.
So, 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 still in your stomach and also during transit through your small intestine, and so boosting the work of your own pancreatic enzymes, that are released by your pancreas into your small intestine. In this case, not only are you ensuring you have sufficient enzymes working on your food, but you are 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 stomach acid production. Pancreatic enzyme production can decrease as you get older, and is also affected by stress/anxiety, vitamins, and the general 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, but for IBS-D you still need to slow down that gut peristalsis.
This is affected by several things:
Caffeine massively 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 must cut out tea and coffee altogether, and for IBS-C you could try drinking more! You can “tune” your gut peristalsis by how much tea or coffee you can tolerate 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. A Pro-Plus caffeine tablet only contains 50 mg of caffeine (equivalent to one cup of tea!), and if you were having 10 of these a day you would rightly be concerned! Caffeine is a drug with no nutritional value. 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, you must do this, and then try re-introducing 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, as in my case. Acknowledging this powerful effect is very important, because even if your natural enzyme levels are good, and you 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 simply because these enzyme reactions take TIME. Be aware that, caffeine also “drives” anxiety, agitation and nervousness. If you are also suffering from stress, then tea and coffee is definitely not helping you. Caffeine is a drug substance, it’s just that as a society we’ve mistakenly chosen to ignore that important fact, and have adopted living with a certain caffeine fuelled life as being normal. Even de-caff coffee, contains other substances that trigger gut peristalsis, so with coffee you just cannot win.
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. 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 – of course it is not wasted time, but time very well spent in servicing your whole body and mind.
Closely related to this (and possibly more importantly 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 for your doctor to get 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 (and 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 irritation and 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.
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 etc), not only by inflammation of the colon. A big problem here, is eating out at commercial outlets that do not change their cooking oil often enough. 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 new oil at a low temperature, and only use it 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 commercial Crème Caramels, soft cheeses, and many other dairy and meat products. After weeks of good health, just one of these products can knock you 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, you must consider it as highly toxic for you.
Carboxy methyl cellulose (CMC) which is more widely used in the food industry, and has similar toxicology in animal studies, giving inflammation of the colon. However, the jury is still out on CMC to its impact on humans, and personally I can tolerate this.
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 the pure plant gel itself is miraculous, so I would recommend you get a tube of this 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; 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). So, always buy ham “on the bone”, which usually has no phosphate added. Personally, all phosphate additives in commercially processed meats make me ill. Unfortunately, this along with the excess of fats, and added pepper means that sausages and sausage rolls are bad for you for multiple reasons, and I have resigned myself to having to quit them altogether.
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 colonic 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.
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 it may help you recover more quickly from long term issues.
Excessive burping which starts a couple of hours after eating can be due to excessive acid being neutralized by the sodium bicarbonate that is released by your pancreas, releasing more CO2 than you can cope with re-adsorbing. The simple remedy for this is to take a couple of ant-acid tablets, or Ranitidine.
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. However, I have had more success with pre-biotics, which are 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, but they are expensive and are just another thing to shop for. They can give a noticeable improvement in your GI comfort and performance, but don’t depend on them alone - it won’t last. You cannot get away with having poorly digested food getting to 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: the "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 ratio of 1:1. No enzyme will help you with fructose adsorption from fruits with excess fructose compared its glucose, but what can help is trying to balance the fructose with an excessive 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 yourself a fruit salad mainly composed of bananas, and small amounts of other fruits. However, beware, that the problem with “fleshy” fruits (e.g. nectarines) is not only in fructose ratio, but also the polyols that they contain, which can still make you ill!
I should also mention hormone changes in women can be connected with IBS, affecting serotonin and 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 it was just about being very relaxed with your eyes shut for half an hour, and not spoiling the fun for everybody by pretending you actually are “hypnotized”! Unfortunately, I was £75 worse off for the privilege. However, like other psychotherapies it concentrates on repeatedly putting lots of positive thoughts in your mind, boosting your self-confidence and giving strategies for dealing with negativity, so I’d say it is a good complement for your psychology and anxiety, although it will not address fundamental organic issues like SIBO. But, as an example of your sub-conscious on your guts, 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, gives you more serotonin, 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 after a meal 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 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 full mug 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 intestinal 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 linseeds for daily consumption for IBS patients.
A few of my most appreciated 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”.
This is one of the best written articles I have read on IBS and one’s first hand experience on how to deal with it. It is quite detailed and informative. I was wondering if you have any information on how to also deal with Acid reflux apart from the PPI’s. It peaks around 2am every morning and keeps me awake. My sleep is broken which causes a chain effect on my body.
Hi Kimke, no I found no other way to control it although I also wanted to avoid PPIs. I now take 20 mg omeprazole every day probably for life. My consultant convinced me that they are safe, and that the long term risk of uncontrolled acidity is much greater in terms of damage and disease to the oesophagus is much greater. You could try them for a while and come off them to see if you manage without them. You should adjust the dose and not take more than you need.
Hi Stuart. I have been on 40 mg of Pantoprazole as well. Sometimes twice a day and just like your consultant said my Gastroenterologist says the same thing. I am also using Zinc L Carnosine and going on the 3 month: 2 on mornings on an empty stomach. I’ve been off and on PPI’s for about 5 years but the last year more on than off. Trying to wean off as much as I can based on circumstances
Yes, it works for me. I was burping all the time and had reflux. I started on 40 mg, but that really messed me up. I cut myself down to 20 mg and been on that for over a year with symptoms under control. You really need to tune the dose. It's probably better to start low and work up!
Didn't realize people were still following this post to update everyone it had nothing to do with IBS. I ended up in a&e in April and finally spoke to a dietitian who told me to cut out gluten free oats. This solved all these symptoms I'm one of the lucky 5% of coeliacs who can't process gluten free oats! So if anyone is in the same position try cutting them out
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