Real Chronic Pain: Hi there all,I know everyone... - IBS Network

IBS Network

47,324 members15,525 posts

Real Chronic Pain

Breathless1943 profile image
20 Replies

Hi there all,I know everyone on this forum is suffering,in some way shape or form. So I do empathise with you all.

Now then,I’m not 100%sure about my problem being IBS,but I do think it is part IBS. I’ve suffered with this chronic pain now for well over 10yrs. Gradually it’s getting worse. I’ve seen specialist from one end of the country to the other,I’ve had no end of tests,and medication,right up to Omarorph. I’ve always suffered worse at the end of a day,when I’m sitting with my legs up,trying to relax. But the pain seems to be getting worse. My colon,never seems to be still,and every time I empty my bowels,which was 3 - 4times a day the pain increases,now I’m going 5-6 times a day and the pain is unbearable. I’m now at a stage where I’m at a loss what to do with myself. I never believed people had IBS on a daily basis,but I’m not to sure now. My symptoms are my colon is never still,each time I go to open my bowels the pain is more severe,the pain is mainly in my pelvic area.

And I’m absolutely screaming out for some help. So should anyone of you have any suggestions that I haven’t tried,I would be forever grateful.

I must say,I take Temazapam for sleep,and once I’m asleep,everything is still and pain free. Which I never thought was the case with IBS.

ANY HELP VERY MUCH WELCOMED.

Written by
Breathless1943 profile image
Breathless1943
To view profiles and participate in discussions please or .
Read more about...
20 Replies
FRreedman profile image
FRreedman

The best place to go for intestinal problems is to a world renowned centre of excellence. The only one I know of for fistula and diseases of the rectum (ie. tops for bottoms) is St Mark's Hospital, in Harrow, (North West London). I would suggest you get a referral letter from your GP, if possible. If not, the only way to get in, is to get really bad pains and other symptoms as you are walking past Northwick Park Hospital (which is the only A+E unit which is attached to St Mark's). Good luck.

Breathless1943 profile image
Breathless1943 in reply to FRreedman

Thank you for that,I have traveled to Birmingham,Manchester,and Nottingham,so I will travel anywhere if I think they could help me. I will look into that.

Stuart24 profile image
Stuart24

Hello, please see my general advice below:

This is my general approach to help people understand and repair their gastro-intestinal (GI) performance after being diagnosed with IBS.

Firstly, IBS must be diagnosed by your doctor or consultant, after checks and treatment for gastro-intestinal infections, or any other clinical reason for your illness. Most people with IBS symptoms find they are all clear, and that they have IBS usually initially set off by a GI infection or other trauma to the GI tract, which is then maintained by our modern diet, freely accessible food, anti-biotics, sedentary and clinically clean lifestyles. This is new age, western illness that is increasing in prevalence.

In 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 does not give enough time for small intestine digestion, resulting in under-digested, nutritionally rich rood entering your colon (large intestine). This excessively rich food causes an imbalance in the types and quantities of good and bad bacteria, which leads to inflammation, loose and frequent stools, gas, pain, mucus, and worsening gut performance that spirals out of control. Eating between meals causes your small intestine to become overgrown with bacteria which compete for your nutrition and cause gas and bloating. IBS-C (constipation predominant) is the opposite situation where movement through the gut is too slow. Be aware that you can still get new GI infections which make the situation even worse, or have newly developed other clinical issues that are not connected to IBS, so you need to be vigilant for this and if concerned then you should visit your doctor again.

Contrary to many, I find that stress control is not that significant in IBS. It may have an effect on adrenalin and serotonin levels, and may cause you to eat in an irregular way and not look after yourself, and these disputably have a stronger effect than the stress itself directly on your gut performance.

The good news is that IBS is at least controllable if not reversible, and you need to be positive that with the correct understanding and behaviours you can get your life back in control. Unless you actually have an allergic reaction to bread or milk or other foods, the fact that you currently can’t eat high FODMAP’s does not mean that will not be able to (at least in moderation) in the future when your GI tract is sufficiently repaired and maintained.

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

You should consider yourself as the manager of a very sophisticated “food nutrient extraction factory”, that gives your body you the extracted nutrients from food and drink and keeps you alive. Resolving IBS is about changing the way you run that factory, get it back under control, and learn how to get the best performance out of it. Imagine a chaotic food factory where the raw materials keep getting added half-way through a cooking process, where someone is randomly messing with the speed dials of the conveyor belts, where the place is never cleaned, where you don’t have the right tools (i.e. vitamins, enzymes and bacteria) to do the job properly, and where the occasional spanner (illness or food poisoning) gets thrown in too; it’s not going to work well, nor have a clear route to improvement.

So after your doctor’s tests, if IBS is your diagnosis, then the first thing to get familiar with is the FODMAP diet. Eating low FODMAPs alone won’t fix you in the long term, but they are the right place to start in order to reduce the total amount of bacteria fermentable food that you are eating. You will later need to wean yourself off the diet, and selectively feed up the good bacteria in your colon using the galactans that are banned under the FODMAP diet. You need to 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 whole process takes several weeks, but eventually, you can be back eating just about everything again.

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. The best fruit of all bananas and you can eat them endlessly. They also make a base for meals in the way that plantains are used in Central and South America. For example, microwave three bananas until they are mushy, and put a couple of fried eggs and lactose-free cheese on them. Yellow plantains can be used similarly. This makes a very different and nutritious breakfast.

Bananas, figs, kiwis and pineapples have an excess of glucose over fructose, and so you can potentially use these fruits to balance fruits with excess fructose. For your body to absorb fructose, you need glucose to be present with it in a ratio of 1:1. If you want to make a fruit salad, make sure it is composed mainly of bananas, kiwi, pineapple, mandarins, strawberries etc. Adding any amount of high FODMAP fruits is generally not advisable, because they can also contain high levels of polyols, and these cannot be neutralized by balancing the glucose content.

So, having adopted the basic FODMAP diet, 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 concerted effort to recover from. IBS causes long-term vitamin deficiencies that are practically impossible to overcome if you’ve already adopted the FODMAP diet. Fundamentally, your vitamin levels affect the health of your intestines, and the health of your intestines affects your vitamin absorption; so it is becomes a vicious circle that you have to break.

Get some multi-vitamins and take them every day with your breakfast, but don’t use ones with high levels of Vitamin E. You should keep your Vitamin E supplement well below 100% RDA (NRV) to avoid weakening your skin. High doses of Vitamin E causes ruptured blood vessels, and many other undesirable side-effects. It is also a fat-soluble vitamin, which means that it can accumulate easily and cause over-dosing problems.

In the UK particularly, just about everyone is deficient in Vitamin D. Get a blood test for Vitamin D and get you doctor to judge your supplement level required to get you to healthy levels. This vitamin is crucial for so many things, and its deficiency causes a whole host of medical problems, including affecting the efficiency of your digestion.

Also, do not get vitamins with high calcium and magnesium content, as in large doses these carbonates will consume your stomach acid, and magnesium will give you diarrhoea (it is a laxative). Unfortunately, the low FODMAP diet cuts out almost all good sources of calcium, but taking pills to replace it is not the answer, you should try to get these minerals from your diet, so it is important to go for all “lactose-free” dairy products in preference over other non-milk alternatives. You will find they are barely different in taste and texture from normal dairy products.

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. The recommendation to eat “little and often” is simply wrong for IBS because it causes “Small Intestine Bacterial Overgrowth” (SIBO).

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, 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 by 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.

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.

If your farts really smell like something died in your guts, then this is because partially undigested proteins are making it through to your large intestine. This smell of rotting flesh comes from the amino acids lysine and arginine being metabolized by bad colonic bacteria into cadaverine and putrescine – the compounds that give the characteristic smell of death! Do not worry that you yourself are rotting, this is just temporary, but it shows that you really need to sort your digestion out. This may be that you have simply eaten more proteins than you can handle, but more likely that your small intestine motility has been too fast.

“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, but this is not usually a reason for your problems, as the pancreas usually produces a vast excess over what is required. If you are taking a omeprazole or another PPI (proton pump inhibitor to reduce stomach acidity), it may be a good idea to use enzymes at this time as your stomach acid digestion will be less effective; this will be compensated to some extent by the additional enzyme action. Most importantly, 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 this to work effectively you still need to slow down your gut peristalsis, by looking at the following 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. The best thing to do is to move on to decaf tea, and have one decaf coffee per day if you really want. 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 enzyme digestion takes TIME.

You should be aware that, caffeine also “drives” anxiety, agitation and nervousness. If you are also suffering from stress, then normal 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 may trigger gut peristalsis, so even with decaf coffee you have got to be vigilant.

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 excessive stomach acid production, 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.

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.) Organic acids. As a chemist (not a pharmacist), for years I could not understand why vinegar gave me prolonged stomach pains. Acetic acid in vinegar, and citric acid are both carboxylic acids that are much weaker than the hydrochloric acid (HCl) that is produced by your stomach to digest food, they are about 1000 times less acidic. In your stomach, they will be protonated by the stronger HCl, and so should not be able to express their acidity, and will contribute practically nothing to your stomach acidity directly. However, what they do is stimulate your stomach to produce MORE acid, more than you need. I struggle to neutralize this with whatever amount of Gaviscon I take, so I suspect that in their neutral state these organic acids may actually pass through your cell walls where they can then express their acidity and cause burning pain. The same would apply for mono-sodium glutamate (MSG), which clinical trials and several scientific articles connect with IBS. In the stomach this will quickly become glutamic acid (a di-acid) and lose the sodium. In white wine malic acid, and in red wine succinic acid do the same. Tomato paste is another one that is concentrated in organic acids and gives me prolonged pain, although I am fine with normal or diluted tomatoes. Sour fruits are generally high in organic acids, and should be avoided. Pineapple juice, sour orange juice and berries also cause pain. All these different organic acids are of roughly similar acidic strength, but it is the trigger to produce more stomach acid, and their own action on cells that may be the issue.

4.) 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.

5.) 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.

Pro-biotics - there is evidence to show that they help to re-establish good bacteria following anti-biotic treatment. However, in long term use they become insignificant compared to I have had more success with pre-biotics like Bimuno, which are basically food for your large intestine good bacteria. These help to strengthen the lining of your colon, and further improve your resilience to potential trigger foods and inflammation, and deal with the remaining nutrients in your food. 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. 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 routinely having poorly digested food getting to your large intestine. These contain galacto-oligosaccharides, about 0.7 g per tablet. Your normal source of these are the galactans which are banned on the FODMAP diet (and also in normal bread). You need these to feed the good bacteria in your colon, not just add tiny quantities of them in pro-biotics. So there is a regular need to be eating bread, baked beans, kidney beans, chickpeas, or lentils etc., but don’t overdo it, and this is after you have initially starved the bacteria with a strict FODMAP diet and fasting.

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 and 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 and most of the other things discussed here.

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”.

badgut.org/information-cent...

guidelines.co.uk/gastrointe...

“10% Human” by Allanna Collen.

“Breaking the vicious cycle, intestinal health through diet” by Elaine Gottshall.

Breathless1943 profile image
Breathless1943 in reply to Stuart24

Wow Stuart,you have certainly give me some reading to do. But I will read what you have said considering you took the time to write it.

I will say to you though on browsing through,I have done the Fodmap diet twice,I’ve had two nutritionalist,I’ve been on most medication . Plus I do have a few other health problems.

But thank you for your time I will have a read later today and maybe get back to you.

Breathless1943 profile image
Breathless1943 in reply to Stuart24

Right Stuart ,I have read through all of that this afternoon,if I said I took it all in I would be lying. BUT,I have picked up on a few things. Recently I changed my diet,and some of what I have just read,is probably the cause of my pain getting so bad.

I think I should say here,I had my Gall bladder removed about 10yr ago,and I’ve been taking Lansoprazole most of that time,so I agree I have probably lost all my good acid,so can you give me any advice on that.

I’ve changed my drink in the evening from chamomile tea,to hot chocolate with almond milk. Which does not contain carrageenan,but I have KoKo milk in a morning which does contain carrageenan. And the drinking chocolate contains soya. I also stopped eating natural yogurt for soya ice cream. I must point out that all these foods were alright to eat on the Fodmap app from London university. But obviously disagree with me.

So thank you very much for your input,I will keep referring back to it. My biggest problem is I’m on a lot of medication so I have to watch what I take.

But a BIG THANK YOU.

Stuart24 profile image
Stuart24 in reply to Breathless1943

No worries, carrageenan is really bad, unfortunately it's in most creme caramels that I used to love, but they always made me ill, and then i found loads on the internet about it. I would have to make my own now.

There are some things on the fodmap diet that i also disagree with, but it mainly comes down to quantity and the way they are cooked.

Gall bladder removal means you should be careful with large amounts of fats in one go of course. If you come off Lanzoprazole you should slowly wean yourself off it to lowest dose possible, as you stomach will overcompensate from prolonged acid suppression.

Breathless1943 profile image
Breathless1943 in reply to Stuart24

Hi Stuart,I’m trying to take parts of your advise. Would you agree all them E numbers you’ve given me,could be part of of my pain.

I’m considering changing back to Sourdough bread,but I’m struggling slightly with milk. Now KO KO milk does contain carrageenan,which it shows clearly. But Blue Diamond Almond milk does not say nothing about carrageenan,but does mention Emulsifier& stabiliser.

But I can’t see nothing that tells me about E numbers. I know Soy milk don’t agree with me. I’m now beginning to think I may be better off with cows milk, Any advise would be welcomed,I really can’t take much more of this. And it’s a waste of time going to a GP,ten minutes is no where long enough to discus anything.

Stuart24 profile image
Stuart24 in reply to Breathless1943

Hello, i was on almond milk for many years. I've now moved on to all lactose free milk. Its nicer, sweeter and an all round better choice. The E numbers mentioned give pain and or diarrhoea. There is no nice bread alternative as i have found, so i have normal bread now but only once every couple of days at most. You need to be strict on Fodmaps for a few weeks initially.

Iguvup profile image
Iguvup in reply to Stuart24

Thanks for all this information:))

xjrs profile image
xjrs

So sorry to hear you are struggling. You may find this article regarding abdominal pain of use: iffgd.org/lower-gi-disorder.... Although the article mentions this particular syndrome isn't related to bowel movements, I think you can get this type of pain in addition to disordered bowel movements. This can be caused by the nerves in the intestines being highly sensitive, the brain interpreting the activity of the bowel as pain and is treated with nerve pain agents e.g. amitriptyline. These agents can also make you a bit more constipated which might help if you're going too frequently. I am unsure whether you have been prescribed anything such as this?

xjrs profile image
xjrs in reply to xjrs

Also you don't mention if you've been referred to a dietician to follow the low fodmap diet? This reduces gases in your intestines, which contribute to your colon stretching and if the nerves in your intestines are sensitive that stretch can send pain signals to the brain. The brain is meant to block the pain via the 'pain gate' via the vagus nerve, but in people with this condition the neurons in the brain that control pain are worn down (by life events) - some nerve pain medications when taken for 6-12 months not only tackle the pain day to day but may also help for these pain control neurons to regenerate so you don't need the medication long term. Some higher fodmap foods can also draw water into your intestines (osmosis) and cause diarrhea. There are also antispasmodic medications.

Breathless1943 profile image
Breathless1943 in reply to xjrs

Hi there,like I’ve said to a few people ,I will take a look at the link you put there for me. The first post you put on I will reply to,Amitriptiline,I’ve tried does nothing for me. I’ve also tried Pregablin. But your first post sounds more like how I feel. I have been seeing Dr Whorewell in Manchester who is supposed to be one of the best Gastrointestinal doctors to see in the country. Now he told me if I took a antispasmodic tablet,like Buscopan 10mg you only get 2mg of the actual ingredient,but if I had 10mg injected I would get the full ammout,which in my case is needed.BUT I have a heart problem so I can’t do that. And he came up with no other suggestion.

And I have tried the Fodmap diet twice ,I’ve seen two dieticians,and I’ve also been to a Physiotherapist,which I paid private for,so even though she could have made money out of me,she told me she could not have been any help to me.

xjrs profile image
xjrs in reply to Breathless1943

It's interesting that Amitriptiline & Pregablin didn't work. I personally couldn't tolerate them. I have been on Linaclotide which acts locally in the gut on pain but is for IBS-C - so could make your frequent bowel movements worse. If it's any consolation, if you do have intestinal nerve pain, there is a research team at Flinders University who are currently working on it (see recent news here: medicalnewstoday.com/articl.... I got in touch with the Programme Manager and they will be setting up a website or facebook page so people can follow their progress.

xjrs profile image
xjrs in reply to xjrs

Also have you tried enteric coated peppermint oil for the pain? I haven't tried this myself, but this is often recommended.

It is IB S I Have had it for fourteen years now both with. Diarrhoea and

Constipation both are just as bad as the other .

The intense pain bloatedness and other symptoms are pretty awful

I have lain in bed crying some nights with the amount of pain

It is not pleasurable to have not a lot they can do. Mainly because they

Do not understand what causes it.

Do not go on a fodmap diet that will make it worse.

Do you have a lot of stress that does not help.

Let me know how you get on.

Michelexx

Breathless1943 profile image
Breathless1943 in reply to Micheledrinkwater19

I have had a lot of stress in my life,I’m that type of person. I also agree with you about the Fodmap diet I’ve tried it twice. Tell me since your so sure you have IBS,is that everyday,daily. That’s why I feel I have something else wrong as well as IBS,like a sensitive colon,nerves.

IBSNetwork profile image
IBSNetworkPartnerIBS Network

Hi,

Sorry to hear you're struggling. If you need help and support please get in touch theibsnetwork.org

Breathless1943 profile image
Breathless1943 in reply to IBSNetwork

Hi ,I am in extreme chronic pain ,which tends to get worse as the day goes by.

But yesterday,I think I had a yogurt that may have been going off. I had about 6-7 toilet trips before bed,and a temperature which I never have. I did take Paracetamol for the temperature,but the pain was unbelievable.

After taking my Temazapam I did eventually fall asleep. But this morning my stomach is still rumbling,and I just wondered if there was any advise you could give me,to help me through today.

Please don’t say my GP,or A&E because I don’t really want to go to either if I can help it. I’ll just say thank you in advance.

IBSNetwork profile image
IBSNetworkPartnerIBS Network in reply to Breathless1943

Sorry to hear you're struggling. For help and support have a look on our website theibsnetwork.org/member-be...

Chirag123 profile image
Chirag123 in reply to Breathless1943

How are you feeling now , i am dealing with same chronic pain like you , please help

You may also like...

Unknown anal chronic pain

I have been suffering from a kind of anal chronic pain for 2 years , I am Chinese, 18 , male , my...

IBS – a real pain in the back!!

and for the most part I can manage it on a day to day basis! This past week however I have really...

Chronic constipation and IBS

I often have pain (daily but some days far worse than others, with stabbing cramping pain differing...

iBS chronic pain and bloating

with bad abdominal pain. Put on 10 mg amitryptaline last year with no help with pain only a dry...

Struggling with stomach pain and anxiety

until after midnight every day. It’s now caught up with me and I’m suffering with crippling anxiety...