So I'm a first time poster, long time sufferer. I've had IBS-D for nearly 15 years, So it's been a long time. I suffer from nausea, abdominal pain, bloating, cramp, chronic fatigue & diarrhea. On a good day I'll bowel movements within single digits, maybe. My symptoms are horrific & pretty much 24/7.
I'm really starting to struggle with the mental battle that comes with this horrible disease. I work full time, battling all of the medical issues constantly throughout the day whilst also managing my workload. I tend to fall onto the sofa or lay in bed after work & as well as the entire weekend, then repeat. I live alone, often have to cancel plans with friends & family, and it's very difficult for me to go on dates or build any kind of relationships. I would like to get a pet but I don't feel as if I have the physical capability to take care of an animal.
I've had the following negative tests: Colonoscopy, endoscopy, abdominal ultrasound, Bile Acid Malabsorption, SIBO hydrogen breath test, lactose intolerance, glute intolerance, stool tests & blood tests.
I've also tried elimination, low fodmap, elemental, vegetarian & vegan diets but none of them seem to help. I manage my diet now with no gluten, dairy, sugar, caffeine or alcohol.
I struggle with even the most simple tasks, I can't even walk to the supermarket without a high level of discomfort.
I previously run a support group for IBS, but not very many people attended & I seemed to be the only person who really suffered &I become too sick to run the groups alone so had to stop. I would like to attend another support group, but there isn't any in my area.
How do people deal with the loneliness that comes with this condition? I'm feeling very lost and don't have anyone who understands the daily struggles. I research online a lot but the only suggestions are to do things that I do not have the physical capacity to do, such as go outside for a walk, or go to a yoga class, or anything simple like that.
I'm not sure what I'm hoping to get from this post. Does anyone on here have the same issues or have any suggestions?
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Briggsy0304
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Hi, I felt I had to reply to you when I read your post. I'm afraid I have no answers for you but still felt I had to write and tell you how I feel for you, going through all this on your own and not much support. It must be hell. As soon as I started reading I thought BAM but when I reached the paragraph that said you had been tested for that, I was like "what the f*ck". You must be tearing you hair out. Could they not give you a bile sequestrant to see if it helps even though you don't have BAM.
Hi Maureen, Thank you for taking the time to reply. I genuinely got very excited when I first heard about BAM, as it sounded very similar to what I'm experiencing, however the results were negative. I've never heard of a bile sequestrant, but I'll add it to the list of things to try (I've got pages of different things to try, I'm not giving up!)
Interesting, I had a report back from a work insurance Gastro who has actually recommended I take Cholestyramine, which is the go to medication for BAM. I just need to get my NHS gastro to approve it now, who luckily I'm seeing in a few weeks.
I'm actually doing ok with the physical side of things, even though I have problems every day & can be in a lot of pain, I'm very much in acceptance in that respect. But the isolation is something that I just find really difficult. I've never been comfortable discussing this side of my medical condition, I can communicate physical problems without any issues, but the mental side of things is tough.
The frustrating thing is I'm a very happy person and have some many hobbies and social events I enjoy, but can no longer do.
It did take me years to feel comfortable & have acceptance with my physical symptoms, so maybe I need to do the same with the mental side. I'm hoping talking about it is the first step towards this.
Cholestyramine is indeed a bile sequestrant also known as Questran, there are a few of them. I am assuming you still have a gallbladder and haven't had it removed for some reason, because that can cause the same problem. I think what you say in your last paragraph is probably right. You have to accept your limitations (which aren't your fault) otherwise you will just keep upsetting yourself. It's not easy to do but better in the long run I think. You have to kind of change the way you think. Little things now make me happy which previously I would have taken for granted. For example, I managed to get out for a few hours today with my husband for a walk around a RHS Garden. I feel as happy doing that as other people do going on a weeks holiday abroad. It really does make you grateful for the little things in life and I don't think that is a bad thing all in all.
Hi Maureen, I'll give the bile sequestrant a go, hopefully it helps. I still have my gallbladder & have had no surgery for my IBS. It was a beautiful sunny day today & I managed to get out of the house to the park for a few hours. It still gets me down that I do a lot of these things myself.
The IBS really affects my confidence. Perhaps I need to find a way to build up my confidence when it comes to talking to strangers, but I find it all really hard when my insides are constantly churning & I have no idea what may happen next,
Sorry to hear you are feeling lonely, it is so frustrating having IBS and not getting any answers believe me I know, and I can relate to your tiredness and also not going out. I am trying to stop messing around with my diet and eating only when I am hungry. I have a life long battle with my weight and I think the chops and changes in my diet aren't helping me! So I am trying this taking vitamins, and hoping for the best, I have also ordered some l-glutamine powder in the hope it might settle my stomach a bit. Failing that I still take imodium to get out of the door when needed. You are not alone in this, many others like this, people are really helpful on this site too! Take care
Thanks for the message. I gave l-glutamine a try but had a very bad reaction. It works for a lot of people though. The Imodium is certainly a god send for me too, although I have to take any where between 4-8 per day.
Have you had a comprehensive stool test done? One which will show the state of your microflora and test for parasites etc I was hit by 4 bacterial overgrowths in 2017 - 3 candida an 1 ' other mould' (I live in the Netherlands and the actual term is 'overige schimmel' so I gave you a direct translation! - in any case - think bad bacteria going out of control and wiping out your good bacteria). Your microflora is crucial and governs, now science is discovering, much of your body's responses. I was clean of overgrowths for 16 months and then got one again in May (I get tested every few months as standard to monitor my flora or sooner, as was the case recently, if I suspect it's happened again) so just completed some antifungals and I'll be tested again in a week or so to see how things are now. Anyway, my point is this - there could be imbalances, overgrowths etc going on - a SIBO test is not the same thing, by the way. I think Maureen1958 had faecal test done in the UK though I could be wrong. If I am wrong, hopefully someone will read this and might be able to direct you to a reputable lab who can do this in the UK. On loneliness, perhaps a reading group? I think there are online ones. Some councils in the UK also have a loneliness campaign, and you are paired with a loneliness ' buddy' for a few weeks who listens, helps you clarify what you want, helps you find ways of meeting people that suits your circumstances. I know this because I was worried about a UK chum and I looked into it for him. If you want a pet but can't manage one, there might be a cat cafe in your area - there people would surely be easy to chat to to. I know you said you struggle with going out etc but perhaps try to re-box it so it's not 'I have to go out and I worried and I'm in pain and it just feels too much' - all perfectly understandable emotions and no one should think negatively of you for having those thoughts - but it's ' Okay, I'm going to go to this cafe for 30 minutes - and if I achieve that, then I that is a HUGE achievement. And if I don't, so what? My only and my worst critic is me, my body is being a cruel B- but that's not my fault. If I don't manage this, then fine, I'll think of something else'. I really hope you find a like-minded, like-situation person who will alleviate, mentally, some of what you're experiencing.
So I've been trialling with Functional Medicine for a couple of years now. I had a GI-Map stool test but had little back. I did recently have an Organic Acid Test which is a urine test, it's come back with candida overgrowth, yeast, Fungai, parasites, malabsorption of fat (Which is actually an indication that I may actually have BAM)
I'm delighted with what it's come back with & it's given me a lot to work with. I'm on a lot of supplements & very strict diet SIBO / Low fodmap diet.
Hi, I really feel for you and can emphasise. I understand exactly what you mean, not only does IBS cause a great deal of pain but it isolates you from so many things. My symptoms in the past 8 months have become a lot worse, I never know from one day to the next how I'm going to be. I used to make plans to meet family/friends for lunch or a shopping day then have to cancel because of the pain, then I would feel bad for letting them down. At one point I just stopped making plans as I knew I would probably need to cancel, but this led to me feeling more isolated and each day became a struggle.
I realised I couldn't go on like that and started taking back control. I explained to family and friends that yes I could make plans but may need to alter/cancel them at the last minute. Instead of going out for lunch, maybe just pop round for a chat instead. They have all been very understanding and I have to say I feel better for it. I have always believed that talking is the best therapy for things that are troubling you and this forum is a good place to get support, I don't know about you, but I feel that although most family and friends can sympathise with our pain etc, they don't fully understand how we feel. Whereas on here, even if you can't always get answers, people are so lovely and offer lots of support, it's good to know we're not alone with our struggle!
It's good that you've learnt to accept the pain, hopefully the rest will follow on soon. I personally feel getting out, even if it's just sitting in the garden can make me feel a bit better. I've got a very energetic dog, therefore I don't have a choice but to walk him every day, some days it can be a struggle, but he repays me with lots of hugs at night!
I wish you all the best and hope you can find something that works for you, just remember, you are not alone.
Thank you for taking the time to send the message. I agree the people really are unable to understand just how it feels. I don't really have supportive family when it comes to this unfortunately, quite the opposite. My friends are really understanding, but none of them really get what's going on.
I find a lot of people are understanding for a while, but then kind of just forget about it. I' a young man, in my 20s & people at work & in social expect me to be able to do things that I just cannot physically do. A lot of my friends are starting young families now as well, so they are all in difficult stages of life where they are consumed with work, family life & no sleep.
I had chronic diarrhea for years, then got my doctor to prescribe Colestipol for me. 6 tablets a day (3 in the morning and 3 in the afternoon). That stopped it totally! There are also 2 others that work wonders: Welchol and Questran. These are acid bile sequestrants along with being used along with a statin to lower cholesterol. I do not have high cholesterol and my doctor said it was OK to take these anyway. They are also used to treat Type II diabetes. Anyway, they work! I was never tested for bile acid malabsorption and I see you were, but I would STILL try any of these! You'll be pleasantly surprised!
No...I was never tested for it nor diagnosed...I just researched the meds and told my doctor about them...he gave me a prescription and they WORKED!!!!
I've sent my gastro team an email asking about Questran. I've been trying to call them for weeks, every day, but they never answer & never call me back. I only get about 5 minutes a year from my NHS gastro as well.
Hopefully they come back and can prescribe me! I'm so sick of going to the toilet all day, every day.
Hey there, I read your post and my heart actually aches for you. I’m just so sorry you’re suffering so much and that you’re so lonely.
Have you ever been tested for Chrons or Colitis? I think Sheeniejay has some really good advice there, which is well worth investigating.
The loneliness is hard to bear. I understand. It’s very isolating when you suffer with a completely uncontrollable condition. I wish I could so something more to help. But I’m sending you a big hug and do keep talking to us ❤️
Yes I've been tested for both but always negative.
I appreciate the kind message. I think I was just struggling a bit yesterday. I've never really been comfortable talking about this side of things (probably because I'm man), but felt I needed to start.
I just want to say how truly overwhelmed with the comments people have added on here. I really feel blessed hearing from such all of you.
I should probably add, I think yesterday I was having a bad flare up & had to cancel attending a work social event. It just left me feeling pretty isolated as I had nobody to share it with, I had to deal with it alone which is tough.
I'm actually really lucky that I can still do things, sometimes, without too much distress. I mean, I still work 40 hours a week which is something, I managed to get to the supermarket & go to the park today which was great.
I'm just generally find that this condition leaves me feeling reserved, almost as if I have to protect myself. I've never had issues building friendships, or starting relationships with women, however I find it so hard to be myself. Most of my relationships have ended due to the stress that comes with it. I always have to cancel events & it usually ends in arguments or the girl I'm dating at the time being disappointed. It really sucks.
I hate letting my friends down as well, as they really are a great bunch, but none of them really understand what's going on. They always seem, not annoyed, but disappointed when I have to cancel last minute as well.
I just hate feeling a burden so end up isolating myself.
You should also feel proud of yourself for opening up here - it is hard to tell people how you feel when it comes to loneliness and, I honestly believe, harder for men which is why the mental health stats for depression amongst men is so shocking. I was listening to a podcast the other day - Radio 4's ' All in the Mind', where one woman had set up a conversations sessions, aimed at helping people isolated and suffering from loneliness. Such a simple idea. Perhaps, if you feel a bit stronger, you could track down the group, find out how she did it, what it involves, get someone to help you out even, and see what happens. It's a social event where I wouldn't be surprised you meet someone with IBS or similar challenges PLUS it's something where you could join for as long as you can and it would kind of run itself eventually, I would think. bbc.co.uk/programmes/m00050sd
You're right, the stats among men is pretty terrible. The biggest killer of men under the age of 50 is suicide in this Country (I do want to point out, I don't feel this way at all, just struggling a bit with this condition).
Men really do not have much of an outlet when it comes to any physical or mental illness. Society demands & expects us to be strong, be providers and deal with everything that is thrown our way in life. I appreciate women have a number of issues with society at the moment as well, but I can only really comment from a mans point of view.
I will give the show a listen & see if I can track down the group.
Hi Briggsy, yeah totally get how you're feeling, when the pain flares up I just get that sinking feeling...here we go again, with no idea how long the pain will last.
I'm sorry that your family are not supportive, it must be really difficult having to deal with this on your own. I'm lucky that my friends & family are really understanding, but like you said, I also feel that when I have to cancel or change arrangements, I feel like I'm letting them down, then I feel bad which probably adds to the vicious cycle which makes IBS worse.
I don't think there are any magic answers to deal with this side of things, but at least we can vent our worries on here, get some support & take comfort knowing we're not alone, there are other people who feel the same way. Just take each day as it comes & cherish the good days & keep talking about it, best of luck.
You really are right in everything you say. It is a vicious cycle. You almost feel worse by having supportive people, because they are so nice & understanding, you feel even worse letting them down.
I really do appreciate the good times when they come along. I've been tackling my problems with diet, probiotics, vitamin supplements and so on recently. I've found that although I'm still good at bad for roughly the same amount of time, my good times are better, if that makes sense.
I just seem to really struggle with Fridays & Saturdays, I mean, these are supposed to be the periods of them week I look forward to, but I dread them, as I just know I'm going to be exhausted from a weeks work & just need to spend my entire weekend recovering, ready to do it again next week.
If you need any help or support with your IBS please visit our website theibsnetwork.org. We are the national charity helping people with IBS to better manage their condition.
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Hello Briggsy0304, I really feel for you and you describe all the issues so well. Afraid I don't have any answers for you. You are right, I think the emotional/mental effects of IBS are almost the worst part, in particular the isolation and loneliness. Doctors and consultants really just focus on the physical aspects. You might find ideas on this site and also know you are not alone. I've never yet actually met anyone else with IBS and have suffered IBSD for several years. I managed to go to a function with a group of friends yesterday where the food was all vegan/vegetarian type beans/spicy/fruit which I can't tolerate. I felt judged for just drinking water, but relieved to get through without a bout of diarrhea. As you say, it's so hard avoiding going out and doing things as well as having to cancel things and being at home alone, in pain and massively fatigued. I think the enormous fatigue causes loneliness. You do so well to manage to work. I do things on my 'better' days and try to tap into activities which don't matter if I have to miss them. You probably do that already. Like yourself, I have lots of interests and it is so frustrating not to be able to do them. The other thing I try is pacing myself, an activity then a rest. More difficult for you though as you are working. Perhaps you might somehow find a relationship with someone who understands - there are probably understanding people out there and there may be others on here who know a bit more how you might be able to go about that. My partner is very good about it all. I hope you get somewhere with the bile acids. I believe they help a lot of people. Best wishes Katerina1.
I think the fact that I am a young person is even more emotionally challenging having this condition. I'm probably going to have it most of my life.
If I was say, a 55 year old man, then perhaps I may almost have more mortgage paid off & could live a slower paced life. Being young and knowing I have to put up with this my entire life is a challenge on it's own. I want to quit work as, even though I've swapped to a less stressful job (and less paid), it's still highly demanding for someone with my condition.
I often think about quitting and getting a job in the supermarket, but stacking shelves, dealing with customers, even the most basic of jobs is a no go for me.
You're right in saying that there are plenty of understanding people. I think the fact that I look fine, like a perfectly healthy young person on the outside is just really detrimental to me. If I don't get things done quickly at work, people can become frustrated (I work in IT, so customer facing). I end up just getting annoyed with people because nobody really cares that you're sick, they just want you to get the work done.
Hi Briggsy, the following is a length read, but hopefully you can find something useful in it:
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”.
Wow... this is an incredible inciteful message. First of all. Let me thank you for a number of your suggestions.
I have all applied a number of changes you have suggested, but perhaps not with the level of depth or understanding above. This gives me a lot to work with - especially the fasting which I've not done much work with.
I'm going to take some time to digest & breakdown everything you have suggested here. I'm already applying a lot of what is suggested, but it certainly looks like I perhaps need to make some changes, additions & subtractions.
Thank you so much for this information, it's extremely helpful
So I've broken this down & want to make sure I've got the right idea:
Intestinal infections
Positive for Candida, Fungai, yeast and some kind of parasite in the large intestine (waiting for doctor appointment to clarify). I also have malabsorption of fat
Vitamins
I have the following, which are majorly deficient
Vit C, D, B6
I’m supplementing with various Vitamin supplements to boost these
Diet
I’m currently on a SIBO Bi-Phasic diet – very simply large (non fermented) vegetable based with organic protein & a small amount of carbs (quiona, rice) – Diet consists of no alcohol, sugar (apart frm some fruit), caffeine, gluten or dairy – I’ve been on this for about 3 months now.
Fasting Periods
I kind of do this ad-hoc – I have problems, I’ll avoid food for a period of time until I feel hungry again – But it defiantly sounds like I need to stage this around 3 meals every day – This is really good advice
SIBO
I’ve had 2 SIBO tests which have come back negative / baseline (Although I think I may have hydrogen sulfide SIBO)
Digestive Enzymes
I’ve tried the following with no success (using various different dosages):
Doctors Best digetzimes
Doctors Best plant enzymes
Quest digestive enzymes
Pure encapsulation enzymes
I’ve also tried paring these with HCI / stomach acid but it just makes me worse.
Can you recommend an Enzyme?
Trans fats
I haven’t eaten any of the suggested for a long time, but I will pay close attention. I cook all of my food with coconut oil at a low temperature
I’ll do some research into all of the ‘E’ you mentioned
Exercise
I exercise as much as I possibly can. I enjoy playing sports & weight training, but can only do so when possible – I agree that the impact on cognitive side of things. Prehaps I need to look into less stressful exercises such as yoga.
Red meat – I generally tend to avoid as it’s my understanding that it uses a lot of digestive enzyme capacity
L-Gutamine – I really had a bad reaction to this, both at a high and low dosage
Oregano Oil – I was on this for a long time, I was very sick when taking it but my practioner told me to not give up. I eventually quit after a few months, in December 2018. I still have problems from taking it.
Buscoan never helped, but I will look into some linseed & aniseed
Hi Briggsy, I think importantly for you the fasting. I am using Lifeplan Digestive Enzymes, at lunch and tea time, but regularly. Although they work in the short term, you want to be using them regularly for several weeks before making any further changes. Yes, the additives just throw an unexpected spanner in the works. Eating large amounts of veg is not good if you are lacking the enzymes for them. Oats, bananas, boiled potatoes, carrots are the safest foods that you can rely on to come back to. Hardcore diet, only in the short term. I enjoy normal bread, cakes, biscuits, puddings etc, but only at meal times with an enzyme, and abstain in between. Your Vitamin D has a big impact on inflammation. Get out in the Sun as much as you can. Cheers Stuart
Interesting you mention vitamin D. I also have psoriasis (skin condition similar to eczema) & have am extreme vitamin D deficient. I spend as much time in the sun as possible & it really helps my skin. I really struggle in the winter time though (which is about 10 months of the year here in the UK)
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IBS please help me!!!
Is it IBS?
Anxiety aggravated IBS
IBS?
