First poster and struggling... need some frien... - IBS Network

IBS Network
27,037 members9,227 posts

First poster and struggling... need some friendly support :-)

lwuk
lwuk
25 Replies

I've been struggling both physically and mentally since July 19.

I became unwell very quickly, basically overnight, with diahorea, nausea, discomfort and pain (right abdomen area / under ribcage). In total I have lost 22kg in weight.

My BM type and quantity varies day to day, it's like a lottery (not the one I wanted to win) as I never know what's coming next! Some day's I can have a BM 2 - 3 times and some day's, I can spend the entire day running back and forth to the toilet.

I can need a BM very quickly. On a scale of 1 - 10, where 10 is I have to be sat on the toilet, I can reach 10 very quickly with very little notice.

My stomach sounds like it's constantly talking (sometimes shouting) to me... the rumbles and noises are obscene!

You can see what I believe is my intestines moving like a snake... twisting and turning! It scared the hell out of me the first time it happened. My doctor just said that it can happen... end of! No explanation.

I feel I'm constantly thinking and worrying what's going to happen next. I'm constantly worrying about where is the nearest toilet? What am I going to do if I need the toilet and and cannot find one? I worry about what I'm eating? and being honest, sometimes it's easier for me skip meals or only eat a small amount if I'm not at home.

I want to be able to take a 'magic pill' to cure me which I know doesn't exit.

I don't feel I have good communication with my doctor and I honestly feel that she thinks I'm waisting her time. I've been told that she believes that I have IBS and that there are many more people out there that have far worse symptoms than me! I know that there are people suffering more than me, but I don't see how that statement is meant to help me feel better mentally and physically or help me deal with the issues I'm facing.

I get upset when taking about this to my doctor and I don't know why? It could be my embarrassment I suppose? My doctor is the only doctor in the practice so I don't have the option of making appointments with someone else.

I also struggle to get family and friends to understand what I'm going through, both physically and mentally. I've said in the past to people, unless you have experienced what I am experiencing, you have no idea what is going on. I try to explain but sometimes I don't think I'm communicating or expressing myself correctly?

I had all the blood and fecal tests possible which came back normal. I've had a colonoscopy with 12 biopsies taken, which all came back normal.

I wouldn't accept the IBS diagnosis initially, but over time I have come to accept it. I have periods where I'm positive even though I'm 'ill' but other periods where I feel I'm in a dark place with it all. I honestly don't feel that I'm suffering with depression but when I feel 'dark', I find the constant symptoms hard to deal with and I become quite upset and negative.

I'm sorry for the long post, but I'm hoping that hearing from others in a similar situation to me may help to shine some light on a dark day.

25 Replies
oldestnewest
Readmeastory

It's not a long post . I understand how you feel I wish there was a magic pill for us . I'm the other way so badly constipated tha t sometime I can't walk . Had all the tests and ct scan and bloods all came back . Normal . Apart from Ive got diterticullitis and slow track bowel . Nothing they can do just diet exercise and laxatives . But in pain daily went private only to be told the same . People don't understand how it affects your life . Doctor always says are you depressed no I'm in pain . Ve lost so much weighting just fed up . Only thing I can say is keep going to doctor till you get some help . Maybe ask about gluten you could be intolerant to that . Or dairy ask for some tests aimed at gluten . It helps when you read other people's stories and you no your not the only one . People just think your constipated eat some prunes I wish it was that easy .. Sorry it's long winded but asking for help on here and maybe someone can help . Stay strong I know it's hard .

1 like
Reply
lwuk
lwuk
in reply to Readmeastory

Thank you for your quick reply.

I forgot to add in my post that my stomach sounds like it's constantly talking (sometimes shouting) to me... the rumbles and noises are obscene!

You can see what I believe is my intestines moving like a snake... twisting and turning! It scared the hell out of me the first time it happened. My doctor just said that it can happen... end of! No explanation.

I find the lack of understanding the hardest part. I've accepted this is a condition I have to live with and manage the best I can but sometimes feel that I have little to no support from my doctor.

My partner (and friends) is as supportive as he can be, but there are times where he cannot possibly understand how I'm feeling or understand my anxieties and worries. This could only happen if he too was suffering with this condition.

I cut out gluten for 2 months last year (Fodmap) but reintroduced it when I struggled to process all of the rice flour which was in the gluten free products.

I've been lactose free since my colonoscopy and have virtually no dairy apart from a small amount of lactose free milk in tea.

Fruit and vegetables are my enemy!

This is coming from someone who used to eat wholemeal bread, salads, fruit and cream cakes!

My diet is now basically white bread, salmon, chicken, bacon, rice, small amount of carrots, dark chocolate and Haribo!

Reply
AnxiousAnnie27

I could have written this post! I totally get it and you’re not alone. Your symptoms do sound severe but I also get the urgency and with that comes the intense fear and panic of needing to find a loo NOW. And of course that panic makes your bowels even more erratic. It really is the most vicious, awful cycle. I’m certain my mental health impacts my gut health and I can guarantee that if I’m due to go somewhere (especially somewhere new or somewhere that a toilet won’t be immediately accessible) I will have an attack. The times that I had an attack when I’m just relaxing at home with the toilet right there are very very few and far between. I understand how this fear can rule where you go and how you live your life. And when you can’t even talk about it properly to friends and family...well no wonder you end up feeling depressed. Even my fiancé doesn’t quite understand how badly this affects me.

I’m sorry I’m not offering any practical solutions. I just wanted to tell you you’re not alone - I wrote my first post here last week and it was basically cantered around my ibs and anxiety conspiring together against me!

One thing I would say is that trying to take back control in small ways has helped me. For example if I have to go somewhere that I know doesn’t have a toilet then I will take two Imodium to slow down my bowel and hopefully stop any urgent need to go. I also carry a plastic bag and wipes in case of the very very worst scenario. If I’m going somewhere new I google ahead and try and see where nearby has public toilets even if it’s a supermarket or something. I have to go watch my son play rugby all over the place and it really does ease my nerves to know that there is a toilet nearby.

I hope some of this helps and I really do feel for you x

1 like
Reply
lwuk
lwuk
in reply to AnxiousAnnie27

Thanks for your reply.

I've gone from a man who could eat everything and anything and someone who couldn't stop all day because of the amount of energy I had, to a man who now feels that everything I eat is making me ill and who has very little energy! The only way to describe myself is like a deflated balloon!

I try to let most things go over my head but sometimes I find this really difficult.

I have a massive holiday coming up in a month and up until recently, my mindset has been 'if I'm ill, I'm ill - nothing is going to stop me doing this!' but over the past couple of weeks I've started to worry... I'm worrying about if I'll be ill day after day!, I'm worrying about spoiling this holiday that we have been planning for years!, I'm worrying if I'll be able to do the excursions and things we have planned!, I'm worrying about the money we have spent and what we'll lose if I cannot do some of what we have booked!

Sometimes I just want to explode to get rid of the worry and negativity in me! I want to be 'normal'.

Apologies for the rant!

Reply
Brainbox

Ask your to for buscopan antispasmodic it has helped me so much with the pain and gurgling good luck

1 like
Reply
lwuk
lwuk
in reply to Brainbox

Thanks for your reply.

If this will help the 'angry' gurgling... I'll give anything a go. I have another appointment with my doctor next week so will enquire about it.

Reply
asbayford

Hey! I suffer with what you have described too, although rare now. I begged my doctor for a dietitian who specialises in The Low Fodmap Diet, it has completely changed my life, found so many food intolerances. Fructans and lactose mainly. I was told for 2 years it's just ibs, I had no idea I was eating problematic foods everyday for years! I hope this may help you :) x if the low fodmap with the dietition is unsuccessful, maybe ask your doc about bile salt malabsorption normally they recommend a low fat diet to see if if that calms it, either way - you have options! It's just finding out what is causing yours :) wishing you well!

2 likes
Reply
lwuk
lwuk
in reply to asbayford

Thanks for you reply.

I honestly feel that everything I eat is making me ill and that it's not helping my body recover and stabilise.

I did a low Fodmap diet after my colonoscopy after the specialist I was referred to suggested it. I cut out dairy, gluten, certain fruit and vegetables and artificial sweeteners for almost 2 months.

Since then, I have a little milk (lactose free) in tea, no artificial sweetness, very little fruit and veg, I avoid anything which is high fibre!

I honestly believe that because of my lack of knowledge and understanding of the Fodmap diet, I couldn't have begun to follow it properly. In all fairness, all I was given by my specialist was a 6 page printout of red foods (bad) and green foods (good). I was simply told to eat less red foods and more green foods!

Reply
xjrs
xjrs
in reply to lwuk

Did you see a dietitian about Fodmaps rather than just a gastro? In the UK NHS dieticians hand out booklets explaining what quantities are permitted and how to reintroduce foods. Do you have a smart mobile phone that allows you to download apps? I have been finding the Monash University fodmap app really useful in telling you exactly what you can eat and in what quantities for IBS: monashfodmap.com/ibs-centra... There is also the Kings College app by Food Maestro which also tells you which products in the UK have been tested: kcl.ac.uk/research/work-wit...

Both apps are available via Google Play on your phone for a small fee.

2 likes
Reply
asbayford
asbayford
in reply to xjrs

Agree with this, both apps are God sends! Fodmap diet needs to be followed correctly and strictly to show any affect doesnt it. Definitely a dietitian is needed to help with the process.

My IBS is caused by SIBO which I hope to get sorted with herbal antibiotics or rifaximin once I've saved up some pennies to go to a gut clinic near me

1 like
Reply
lwuk
lwuk
in reply to xjrs

Hi. Yes I have both apps on my phone. My gastro gave me the 6 page photocopied sheets. I haven't been referred to a dietitian and cannot get referred to one at the moment.

Reply
Munchkinfeet

Your symptoms are my symptoms. I too started practically overnight sep18. Lost my appetite first, then all the gurgling and pain started, then the diarrhoea and cramps got really bad about march/april and I've been off work since then. Had loads of tests and tried loads of meds. Lost 2 stone. Been in hospital twice, colonoscopy, endoscopy, scans etc. Bleeding from the bowel, passing mucous, undigested food. I developed secondary raynaud's too, possibly autoimmune probs.

My consultant won't call it IBS. He's calling it bowel spasms and bowel neuropathy. I'm taking pregabalin and just started fodmap. Still early days.

My gp reckons the gastro isn't convinced by the findings. I also have gynae issues and kidney stones so it could all be related, gp thinks endo/adhesions maybe?

Asbayford said fodmap changed their life. It really can for many people. If I were you I would try it again. If anything it is making me constipated, which brings its own problems. Last week I nearly collapsed with cramps taking my kids to school after 3 days no BM. So I had to take a laxative and then back to square 1.

But also find meds that really work. I started on amitriptyline but I was intolerant and it really is awful, and it didn't help. Pregabalin has been in clinical trials for helping gut issues, I am hopeful but I am still having nasty side effects. Also check all your meds ingredients. Lactose used widely as bulking agent.

Your gp should not belittle your condition. My gp is very supportive and acknowledges how debilitating gut issues can be. My colleagues don't get it. I have a real concern I won't be able to return to work in the same capacity. I am a primary teacher, I can't function while ill.

You have my empathy. I wish you all the best x

2 likes
Reply
lwuk
lwuk
in reply to Munchkinfeet

Thank you for your reply. I'm definitely going to try the Fodmap diet again. I've have another appointment with my doctor coming up and I'm considering taking my partner with me - I do get upset when explaining what's happening to me! I can talk and explain everything to my partner and friends but sit me in front of my doctor and I fall apart 😵

Reply
weegmack

I’m so sorry you’re feeling so awful 😞. The anxiety your symptoms are giving you is just the worst. I’ve had IBS for years now and go through periods of real urgency, and it’s terrible. As you say, unless someone has experienced that terror of trying to find a toilet NOW, they don’t understand at all.

One thing I wanted to ask you - did you basically get ill overnight, out of nowhere? This happened to my sister and it was food poisoning. She was left with a post-infection IBS that took some time to get out of control. She was basically passing undigested food and it was so awful for her. It settled down eventually, but she basically follows a vegan diet and that’s worked for her. I think you need to be more pushy with your doctor and ask to see the gastro again. This is your life and your body and you need to put your foot down. X

1 like
Reply
lwuk
lwuk
in reply to weegmack

A few weeks before, I believed I had food poisoning. Between the suspect meal and my first doctors appointment, I went from good to bad over a 3 week period... Steadily getting worse day by day.

Reply
weegmack
weegmack
in reply to lwuk

I think you need to reiterate that to you doctor. It just sounds so similar to what happened to my sister. Sometimes having food poisoning can leave you with an infection or total imbalance of the gut. You could try probiotics too. So sorry for what you’re going through xx

1 like
Reply
lwuk
lwuk
in reply to weegmack

Thank you. I've been taking pro biotics since last November. I think they help to an extent... part of me thinks that taking them helps, so as far as I'm concerned that's a good thing 🤷‍♂️

Reply
sweetsusie

Have your doctor prescribe you any of these 3 meds: Welchol, Colestipol, or Questran. (I take 2 tablets of Colestipol in the morning and 2 tablets in the afternoon.) I no longer have any diarrhea and I was chronic for YEARS! I have my life back...so I do consider these drugs miracles!

1 like
Reply
lwuk
lwuk
in reply to sweetsusie

Thank you for taking the time to reply. I'll do some research.

1 like
Reply
sweetsusie
sweetsusie
in reply to lwuk

Good deal...tell the doctor that these drugs can be used for bile acid malabsorption...that may help lead them to prescribe one of them for you....you can also research it on Google for sure...it's ridiculous for anyone to suffer from chronic diarrhea anymore...

1 like
Reply
IBSNetwork
IBSNetworkAdministrator

Hi,

We understand how you're feeling. Please don't think that you're on your own as we are here to help and support people living with IBS.

Have a look at our website about how we can help you. theibsnetwork.org/

We also suggest speaking to your GP about how you're feeling.

Reply
Edawg666

I can really relate to you. For over a year now, after a colonoscopy, I've had bad diarrhea. Mornings are the worse. I can go 5-8 times before even eating. I've had all the tests and nothing has come up "positive" so they say IBS. I don't really agree with diagnosis and have almost lost hope myself. I can take Viberzi and it will shut me down for the day but all that is doing is covering up some issue. Like you, people don't understand what it is like. I have become very reclusive and stress about doing anything. My life has taken a huge turn. I used to be very active and play in a band and love doing things. Now I just work and lay on couch, so depressed. Have you been tested for parasites or SIBO? I have tested positive for SIBO but have tried treating with no symptom improvement. Also negative for parasites but I really feel like that might be my issue. I've lost 50 pounds in a little over a year. Can't fit into any of my clothes and look sickly. I tried getting admitted to hospital twice but they say it's not "emergency". I really don't know what else to do at this point. I have a son and wife and my relationship (with wife especially) has been really ruined. She thinks that if I am stronger and have better attitude maybe it would go away. So frustrating. Anyway, hope you can find some answers.

1 like
Reply
lwuk
lwuk
in reply to Edawg666

I truly hope you find answers too! I honestly hope your wife's attitude changes for the better... how anyone can think that a better attitude would make this go away is beyond me ☹️ I get so angry and frustrated at times being told that if I'm positive and don't think about it then the bad times will not happen! If only!

I struggle when my doctor tells me it's 'just' IBS and what I'm experiencing happens and it's part of the condition.

Reply
Stuart24
Stuart24
in reply to Edawg666

Hi mate, you need some help, please see my general reply 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, and sedentary and clinically clean lifestyles.

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.

1 like
Reply
lwuk
lwuk
in reply to Stuart24

WOW! Thank you for posting all of this information.

I'll have a read tomorrow when I'm awake enough to take it all in... thank you 👍.

Reply

You may also like...