No social life

[Rustyrose]

Does anyone find their IBS affects their social life, i find it so difficult to leave the house (must know where the loos are ) i suppose getting worked up doesn't help and my partner gets fed up with me to sometimes (not a fellow suffererer) its easier to stay at home obviously i can go out with out needing the loo but i just cant rely on that ,am i on my own with this or is there anyone out there feel the same or have any good tips for me ,sorry for my grumbling and thanx

[Cat33]

NO Rustyrose you are definitely not on your own It's the most horrible horrible thing I am exactly the same

I'm having CBT at the moment and it's amazing and really helping My doctor referred me or I think if you look online you can self refer but not sure on that If the thought of going to a therapist is too much you can do it over the phone I go face to face and because we are talking about it I'm fine and relaxed

My life was ruled my toilets an absolute nightmare and it's so hard for anyone who doesn't suffer to understand I would love to be able to go where I wanted without that constant fear

One tip I would give you if you don't already but use disabled toilets whenever you can I have to use them as I have arthritis in my spine and find normal loos far too low The disabled ones are so private and like a little bathroom You can get a Radar key from Amazon very cheaply as some disabled toilets you have to use them Don't feel "guilty" about using them either

There is a nice relaxation video on YouTube by Michael Sealey for IBS relaxation (just type that in)

I have also found one called Hypnosis Deep Trance Healing which is amazing and is helping me so much it makes me so deeply relaxed

I am getting so much better now and getting out I have very bad days but I keep positive

Just remember you are not alone there are loads of people suffering in the same way

If you would like to chat anytime that would be great as it's so hard to cope with

Take care and keep smiling xx

[Rustyrose in reply to Cat33]

Thankyou so much ,yes i definitely need to relax more before leaving to go out ,and i will try some of your recommendations i just wish my life was normal !!!! .

[Cat33 in reply to Rustyrose]

I know exactly how you feel

Would give the world to be "normal"

This I hope will bring a smile We went to watch the Royal Procession at Ascot the other day as we walked away from the safety of knowing there was a toilet I could feel anxiety start to build and I got to the point where I could have cried We had our sons dog with us and he was under strict instructions not to have a poo in front of the Queen The panic as it always does died down no accident as my mind was telling me but I thought the dog didn't go but I felt I nearly did 😊

Wishing you all the very best xx

[Maureen1958 in reply to Cat33]

Made me smile.

[Cat33 in reply to Maureen1958]

Glad it did I think we have to keep smiling

Thanks for replying xx

[dinghy]

Oh no you are not alone! I know where all the loos are in my locality and at which train stations and underground! It's the first thing I look for at restaurants and I won't go to cafes that only have one loo! Theatres another one I am careful of.

I have now got IBSD mostly under control through using silicolgel which helped me break the psychological circle of stressing out about travel or eating out or visiting friends and having am attack. The anxiety created would trigger an attack so then set me back but once I was able to control this more and learn that many times I would be so anxious but not in fact have any accidents, the silicolgel helped start to make baby steps back into a full social life, shopping trips, theatre trips. I still know where all the loos are though and if I can sit somewhere where I not hemmed in for a quick departure, that also helps greatly soothe anxiety. Silicolgel has given me the crutch I needed and I still have comfort items in my bag like loo roll and Imodium but rarely need them. Poo Pourri is also good if you have to use a toilet and not feel self conscious about any odours created which I can find quote embarrassing. I also practise deep breathing and quietly om-ing on the exhaled breath when I start to feel the tummy nerves and first waves of bowel rumbles and that also helps greatly. There is also a great book by health psychologist Dr Meg Arroll if you Google her you'll find it about IBS and the gut. Worth a read. Good luck and I hope you find some helpful hints and comfort items to help you venture out more comfortably. And really try and rationalise what your fears are and do they always materialise? 9 times out of ten mine probably didnt although i would feel excruciatingly uncomfortable amd make it to a toilet. Once i started focussing more on the trips out that were better amd realising i must habe some control, i got beyter at the control side not the focus on the what if side. CBT might be well worth a go of you can't manage on your own.

[Rustyrose in reply to dinghy]

Thankyou so much where do you get silicolgel can you buy it or is it prescribed also the poo pouri ,as i hate using loos when people are going to follow me in or incase they can smell the odour while im in there ,i know that sounds completely irrational but thats how bad it feels to me ,i will try and practice some relaxation tips ,I just wish my life was normal !!!

[dinghy in reply to Rustyrose]

No not silly. I dont like leaving a smell and also habe two children who dont always flush so its useful at home anyway!! We use original citrus most. Poopourri.co.uk and i have seen it in Sainsburys. Holland and Barrett or Boots for silicolgel or silicol.co.uk. I also habe a fear of flying and so I use silicolgel before travelling otherwise I am in every airport toilet and in a panic on the plane everyone someone is in the loo!

[Cat33 in reply to dinghy]

Great reply dinghy It's a nightmare isn't it x

[dinghy in reply to Cat33]

It is indeed. Lots of trial and error in finding what works for you. X

[Cat33 in reply to dinghy]

Yes definitely thanks for sharing x

[jbrking]

I have bile acid malabsorption so now take binders. They’re great. Have you been tested for that? I was told I had IBS for years. BAM is very undiagnosed. Anyway for all you sufferers there is an App called Flush which shows you were toilets are. Helps sometimes.

[Rustyrose in reply to jbrking]

Thankyou whats involved with a BAM test i haven't had that test done ,i have had my gallbladder removed as that got any connection ,as seem to suffer more since best wishes fellow sufferers x

[jbrking in reply to Rustyrose]

It’s a really simple test. You take a tablet which has a very small amount of radio active in - pl don’t be scared by that it doesn’t affect you. A few hours later you have a sechat scan. It’s not even a whole machine, you lay on a bed and the machine just goes over your middle bit. That lasts 10 minutes. Then a week later you have another scan so they can compare. It’s very non invasive. You may need to stop some meds before but they’ll let you know which ones. I’m on a few different ones and all of mine were ok to continue taking.

[IBSNetwork Partner IBS Network]

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[Stuart24]

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. 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-reacts to very mild stimuli. This leads to inflammation, worse gut performance that seems to spiral out of control. Be aware that in this state you can 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 FIVE key topics: your vitamins, daily fasting periods, digestive enzymes, toxic food additives, and adrenalin control.

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. Equally, I just don’t want to be dependent on medicines until one day when I have no other choice.

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. Your vitamin levels affect the health of your intestines, and the health of your intestines affects your vitamin absorption and your production of digestive enzymes; and 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 can 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 to boost your calcium, as unfortunately the diet tends to cut out almost all of the good calcium sources.

Second, sort out your fasting periods immediately. 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 black 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.

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 enzyme insufficiency. In most cases, I would suggest to try some multi-component digestive enzyme supplements, and take these for as long as you need to while your small intestine repairs. You want them to contain amylases, proteases, lipases at least (for starches, proteins and fats respectively), but they can also contain other enzymes such as cellulose (for tough vegetables) and betaine HCl. Enzyme production can decrease as you get older, it is affected by stress/anxiety, and the health of your guts and you want to be sure that undigested food does not get to your large intestine where the bacteria will go to town on it. It could be that sporadic sufficiency of enzyme production may be one of the factors why IBS is so variable. These enzymes are massively complex molecules that take a lot of cellular effort to make and are then sacrificed in your food. Replenishment of them takes time, and well fed healthy cells. Using supplementary enzymes ensures that they can get this nutrition, and that your digestion goes to completion before the food gets to your large intestine. But it’s not just the enzymes, the following two factors are also as important as these first three.

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), but it will rot your teeth in tea / coffee all day unless you do extra teeth cleaning. Otherwise, it’s “Stevia” which is quite a new plant based sweetener and seems to be safe for IBS. Ideally, general advice is to cut down on tea/coffee stimulants, no more than 3 cups a day is the NICE guidance.

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.

The fifth major topic in treating IBS, is adrenalin control. The GI tract 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 maybe actually 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. Exercise increases your serotonin levels, but there are also two other surprising ways to do this: 1.) avoid hostility and increase your agreeableness!, 2.) bright light, i.e. get outside in the daylight as much as possible and avoid dim lighting indoors.

Other points...

Red meats generally take a long time to digest, and also contain some trans-fats, but are usually tolerable. Only have them once a day, ideally for lunch, and just a light salad to go with them, not a load of starchy food or grains, as they have long digestion times. You don’t want carbohydrates being held up in transit because of heavy meat digestion late in the day. However, if you are taking digestive enzymes you can over-rule this advice.

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, 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. Not that they do you any harm, just another thing to buy and take. The 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 eating a banana with it. This is because bananas, figs, kiwis and pineapples have got an excess of glucose over fructose, and so you can balance fruits with excess fructose, by those with excess glucose, hence avoiding excess fructose. If you try 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 the “fleshy” fruits (e.g. nectarines) is nothing to do with fructose ratio, but rather 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 the brain-gut nervous system, but 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 very relaxed with my eyes shut for half an hour, and I didn’t have the heart to tell the woman that I wasn’t really hypnotised! 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, try taking yourself off camping for a few days in a “proper” tent. The change of living environment will slow down your digestion 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 such 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, have available in advance some linseed (seeds) and natural aniseed (Star Anise), and when you are bad make the following tea: in a saucepan, add 1 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...

[Cherico]

You’re definitely not alone. On bad days I’ll avoid going anywhere. I travel a lot for work so it’s hard to learn where the loos etc are. Travelling doesn’t stress me but the thought of being caught out or having to queue for the loo or worse, there being only one loo.

[Marygulliford]

Believe me, you are not alone in this. Takes so much energy deciding when and if to go out. Only an IBS sufferer will understand. Take wet wipes, change of underwear (I also keep these items in my car boot!) And imodium before you go out, most people I know who suffer take imodium. And take them before you leave home, settles stomach. Then hold your head up high and pat yourself on back for getting on with your life. Good luck my dear ❤️