Fed up with IBS - any advice?: I have suffered... - IBS Network

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Fed up with IBS - any advice?

KatieD96 profile image
10 Replies

I have suffered with IBS for over 10 years and first noticed it at around age 10 when taking some tests at school and constantly having an upset tummy due to worrying, I still suffer with this now and stress definitely worsens my IBS.

I suffer with bloating, cramping, flatulence, diarrhoea and stomach pains/acid. I also feel very fatigued and tired and suffer with nausea! I’ve found that the acid has gotten worse over the last 6 months and feel my IBS as a whole isn’t controlled.

I am on metoclopramide, ranitidine, buscopan and loperamide and have to take pain killers and other antacids regularly.

My doctor started those tablets around 4 weeks ago and I’ve not seen an improvement and now I just don’t know what other medications I could try as I’ve previusly had omeperazole, lansoperazole, mebeverine and many more! I’ve tried following a FODMAP diet, I’ve tried cutting out dairy and gluten but nothing seems to work.

I’m seeing a specialist this week but I just feel so fed up with my IBS symptoms and feeling rubbish every day!!

Can anyone offer any advice?! Every little bit could help!!

Sorry for the long post, I don’t know many people that suffer as bad as myself!

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KatieD96
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10 Replies
Whitesugar profile image
Whitesugar

When you see the specialist make sure you talk about Bile Acid Diarrhoea. One third of patients diagnosed with IBS probably have this condition which can be treated. Good luck

Neil119 profile image
Neil119 in reply to Whitesugar

I agree good luck

Iesgobdafydd profile image
Iesgobdafydd

Have you tried things like hypnotherapy, meditation, yoga? I tried Michael Mahoney's hypnotherapy recordings (healthyaudio.com/healthy-au... - they didn't help me with my IBS, but that's not surprising since it turned out not to be caused by stress. They were incredibly relaxing to listen to. It sounds like he gets some decent results with stress-related IBS, and the NHS in his local area send him patients. I was looking at an article yesterday about the benefits of meditation one of which is stress reduction (businessinsider.com/neurosc.... My daughter suffers from Chronic Fatigue Syndrome, and she's been told by the medical professionals that that condition is the result of the amygdala (the part of the brain that responds to stress) getting thrown into a higher-alert state and not being able to drop back out of it. The advice on fixing it seems to be to avoid overdoing things, incorporate rest breaks into the daily routine (where rest means physically and mentally relaxing, not reading or even listening to music, just chilling in a comfortable chair or lying down), using meditation techniques and gentle yoga type exercises and gradually building up one's physical stamina as much as possible within these constraints. You mention fatigue as well as stress, so some of those ideas might help you as well. Another thing you could look at if you haven't already is SIBO (small intestine bacterial overgrowth) - some doctors aren't convinced it's a problem people actually get unless they've had surgery, others differ, but there are herbal as well as pharmaceutical treatments for it if you think you might have it (universityhealthnews.com/da...; I tried a herbal treatment for it called Atrantil for about six weeks, and found it made a modest but noticeable improvement in my own IBS symptoms, which was better than anything the doctor had given me or recommended. A slow cure followed, but I'm not sure if that was partly due to the Atrantil or the result of other things I tried afterwards. My own IBS was, I believe, caused by TMJ so that's another possible cause to consider but less likely to be relevant in your case since stress is the likely cause - but it's not impossible someone could have both and have both contributing to their gut problems. There might be other psychotherapy methods that might help - something to think about is that everyone experiences some stress, and for those of us with stress-related IBS, the problem isn't the stressful experience itself, but how we process it mentally and physically. Changing our strategies for dealing with it might help. I read something about how the stress response works that I found very helpful - when we see something that could be dangerous, the amygdala fires a warning to the conscious mind. There is a very brief opportunity for the conscious mind to override the warning by thinking something reassuring about how it's ok, e.g. the person who just jumped you from behind is just your kid or whatever the case might be. If you don't override the warning quickly, because you're not sure if it's safe or not, the full stress response happens, and your amygdala's more likely to respond to similar situations in future, and if the same kind of situation happens too often and frequently doesn't get overridden, in my personal experience the stress response gets stronger and builds up in the direction of paranoia. I find I am able to combat these fearful tendencies in myself to some degree by doing my best to issue a calming mental response quickly in situations where my rational assessment is that there is very little danger. Stage fright is a problem for many people, and there are books on dealing with it. I hope you find something that helps you. Keep looking until you do, get all you can get out of your doctors but also look for information yourself because you have a lot more motivation to solve your difficulties than they've got!

ElkaAnn profile image
ElkaAnn

I have had IBS for the past 8 years or so. Last year I decided to lose weight. I went on Weight Watchers and lost 39 pounds so far. This improved the IBS, but 2 months ago I gave up eating dairy, eggs and meat. I eat fish. The rest of my diet is basically vegan. My IBS improved dramatically. I suggest experimenting with eliminating dairy, eggs and meat. Just do it for a week and see how you feel. It's worth a try. I know it's hard at first, but well worth it.

Neil119 profile image
Neil119 in reply to ElkaAnn

FISH IS A YES - 3 YEASES !

golf99 profile image
golf99

The only advice I can offer is that you are not alone! I have the same and carry my bucket of drugs with me. I was forced to retire at a younger age. And yet the doctors can do nothing!

Stuart24 profile image
Stuart24

Hello Katie, wow that is a load of drugs! I also have a drawer full of them, but now I take none except vitamins. This is my general response for IBS to help people find a baseline. You have obviously had these things prescribed, but have you had tests for intestinal infections if not then go for that first as you may need something to clear you our. For about 85% of cases, IBS is a condition brought on by our modern diet, freely accessible food, sedentary lifestyles and a trigger of an earlier infection. After 27 years of suffering with IBS I have found that the long-term solution that actually works is all about vitamins and fasting and both are equally important. You are effectively the manager of a “food nutrient extraction factory”, I know that is obvious, but I have found that IBS is not about medicines, but about changing the way you run the food factory, and thinking about it in that way.

This is based on some excellent publications, and also by observing how healthy people live. So, if you are all clear from the doctor’s, 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 very difficult 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, so it is a vicious circle that you have to break. 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. Do not get the ones 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 you should get enough of these minerals from your diet. If you are on low FODMAPs, go for all lactose free dairy products to boost your calcium. At the same time, sort out your fasting periods immediately. This is normally completely overlooked by GP’s, but is absolutely critical. Your small intestine should be practically sterile, and your stomach acid along with bowel cleaning during fasting (called MMC) will usually do this. But, you need to fast for this to be effective, and by that I mean, ABSOLUTELY NO eating in between meals, only water, or zero-sugar drinks. Imagine that you never washed your dinner plates and just kept putting food on them all the time!, they would be permanently loaded with bacteria. 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 the original design of the human being. 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. Sorting out your small intestine (SIBO) comes first. Furthermore, you should be able to avoid 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% 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 again for at least 5 hours, and eat well again for your evening meal because it has got to get you through the night. No supper or snacks, no food or milk at all until breakfast the next day.

Further to this there are some things that cause direct inflammation of the colon by toxicity, and are are considered separate to the usual SIBO mechanism described here:

1.) Seek out and try to eliminate “trans-fats”. These cause direct inflammation of the colon, separately to bacterial overgrowth and you will be more sensitive than most because of SIBO and this confuses what is causing you trouble. Chips, hash browns, butter, popcorn and things cooked in cheap or old frying oil as you find in many restaurants can give you colon pain directly through inflammation. It usually passes in a day or so, but trans-fats are bad for you in a miriad of ways, not only by inflammation of the colon. Ideally, starches should only be boiled, rather than fried.

2.) E407, or “Carrageenan” – is a high MW galactose food additive derived from a red seaweed, which is only present in small quantities as a thickener, but even at that level 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 Milbona Crème Caramel, and many other products. After weeks of good health, just one of these products knocks me out 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 may 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 injected even 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. It may take a couple of days to get over a dose of this.

3.) E451 and E452, are sodium triphosphate and sodium polyphosphate predominantly used for packaged ham. These are also allergens for IBS and give me a similar reaction to E407. The diphosphate (E450) is commonly used in many foods and is not troublesome in my experience. So, make sure you only buy fresh ham “on the bone”, and check with your butcher whether it has been treated.

Red meats take a long time to digest, and also contain some trans-fats, but are usually tolerable. Only have them once a day, and just a light salad to go with them, not a load of starchy food or grains, as they have long digestion times. Ideally, you don’t want carbohydrates being held up in transit with heavy meats.

You will feel hunger in the fasting periods, but this is doing you good!, and you must NOT respond to it - only with water or no-sugar drinks. This is CRITICAL. Importantly, when you are feeling better, do not resort to your old ways, you are still recovering, and you need to make a life-style change to have this level of discipline in your eating and continue with it. Do start doing some exercise if you don’t already, as this will really help with your gut motility, and your general health. It takes a few weeks at least, and you need to persevere. You then need to maintain a healthy and consistent way of eating and always keep the vitamins topped to prevent you from relapsing. In a couple of weeks, you should be able to be getting off the low FODMAP diet, and mixing back in the higher FODMAPs.

There is a lot of support for L-glutamine to help with repair of your 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. A lot of this was taken from this excellent paper below, but it does fit exactly with what I have experienced. For the first time I really feel in control of the IBS mystery that has been a burden for years. I find no need at all for probiotics, you want your large intestine to come to a level of control based on your diet and good health, and not disturbing the balance by taking any other bacteria. Good luck. Please reply if this works for you. Look up:

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

Kelill profile image
Kelill

Sorry to hear that. If you haven’t already it might be worth asking about what might help calm your system and address the anxiety you feel and that IBs causes. Exercise might help as well. Good luck

Kelill profile image
Kelill

Just remembered I had a bad year last year and found the VSL#3 sachets helped with the formap diet, less fruit and sprinkling some flaxseed on cereals and yoghurts .

Hollings profile image
Hollings

I've had Ibs m for 40 years I've tried everything medication, hypnotherapy, cutting out gluten and lactose, the Fodmap diet talking to a counsellor nothing works. I also have reflux since having my gallbladder removed. I have nausea and fatigue and dizziness. My doctor is very nice but the amount of medication is limited their are about 4 different ones I've tried them all. It's totally ruined my life I don't think that one day goes by without one symptom of another. Please let me know if the specialist can shed any light on Ibs ? I wouldn't wish it on anyone.

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