A classic conversation with a doctor

I've just started a blog about my forthcoming hypnotherapy for IBS which I've had since the age of 17 (now 62!)and I've just read your story. It's quite comforting reading other people' stories isn't it?!
The main problem I've had, like you, is trying not to appear a whinging old so & so!

I recently casually asked my Doc.about hypnosis and he said" Yes, very good, I'll refer you to the Hospital, there's a consultant there that has a clinic for this!) I thought "Why the.... didn't you mention it to me a long time ago then?!"
Anyway the upshot was that I got a preliminary consultation 2 weeks later and am starting treatment in 10 days. This is my last chance for real help, so I've got my fingers and everything else crossed!
Best wishes to you.

Hi John - thanks for your comment, I hope the hypno goes well for you! It just shows you that it pays to be an educated patient, some docs really need a push in the right direction.

Hypno has some very good research studies to show its efficacy, and it really should be used more widely.

Dear Dr.
>
After 11 years I come to you with the idea that it might not be IBS after all but 'Bacterial Overgrowth'. I read about it on the internet and cut out as much sugar from my diet as possible to test the theory. And what do you know, heartburn reduced, gas reduced, lethargy disappeared, migranes disappeared and to cap it all off it's easier to trace 'attacks' back to specific foodstuffs.

I would like to take this oppertunity to thank you for the advise you gave me when I presented this to you...
(1) If you must look up the internet then patient.co.uk is good (it's not, it's rubbish!), please avoid those American sites.
(2) IBS can be triggered by many different.
foodstuffs, if you have found what upsets you you should avoid it.
(3) We do not treat with Antibiotics.

---Thanks for nothing!---

Does any of this sound familiar to anyone. I am sick of being patronised, the first breakthrough I have had in 11 years, and I get the all encompassing 'pat on the head'.

I mean "Avoid Sugar". She might have well have said "Avoid Oxygen".

Can anyone offer some advice on what I can do in the UK to get checked out for Bacterial Overgrowth?

Alan, let me be one of the first to congratulate you. I love it. Everytime one of us gets better it's a victory for the entire herd.

I had a test done for small bowel bacterial overgrowth. It's called the hydrogen breath test. I asked my doc to perform it once I read about it. It was negative. Subsequently I found out that a hydrogen breath test should also test for methane since some bacteria emit large quantities of methane rather than hydrogen.

At any rate, I assume that I am subject to microbial overgrowths be it bacterial or fungal, based on my symptoms. Even bacteria that are a natural part of our zoo can supposedly get out of hand. Sugar is the "bad" bacteria's favorite food. I've read that they also love flour, corn, potato chips and even undigestible fiber. So I try to get my fiber from green vegetables and 100% sprouted bread. But that's me. Other people swear by metamucil and cellulose.

Keep going Alan. Keep trying to solve the riddle - for all of us. I recently read an article that indicated we need sunlight to get the good flora growing and keep the bad bacteria in check. Guess what I've been doing during my lunch hour. Think about it, we used to live outside all day, everyday. Now we're closed off, inside all the time. Very unnatural. Could that be part of the problem too?

Don't be angry with the doc. She knows not. Her ignorance has prompted you to take control and now YOU own your IBS (hate that term) rather than IT owning you. Think of IT as a giant lab rat, subject to your never ending experimentation.

Just to get your wheels turning even faster, may I suggest a great sci fi flick called The Andromeda Strain. In the movie the research scientists have to try to become as bacteria free as possible - inside and out. A few layers of skin are lasered off. And guess what the only foodstuff they're allowed to eat - protein. On that note, let me say that I don't do well with overcooked animal flesh. Raw fish, rare beef and lamb are fine. Cold cuts, hamburgers, even smoked salmon don't sit right. But again, that's me.

Get the bad guys Alan. Keep us posted. Sharon

Sharon,

I have ordered a book by Dr. Mark Pimentel (A New Ibs Solution: Bacteria-The Missing Link in Treating Irritable Bowel). I plan to go back to my GP after reading this and demand to be refered to a specialist. It'll be easier to reference an actual book rather than web pages.

I'll let everyone know what the book is like and how I get on with the NHS's finest.

Thank you for your kind words, although I am far from 'better', but this really is the first time things have improved in 11 years (strictly speaking that is not true as a US doctor had me on tranquilisers while I was over there, they were very nice. Of course, when I came back to the UK our feckless profesionals wouldn't prescribe them and put me into detox mode. I can tell you that IBS combined with tranquiliser withdrawl is one hell of a ride!).

I now have the bit between my teeth and I am fired up to persue. I will keep you all informed of my progress.

Cheers

PS I reeeeally miss chocolate!!

Alan, I once heard that it takes one month for every year you've been sick to get well once on a program that is helping.

I believe (note the believe) that SIBO is just one more condition resulting from a common root cause. So SIBO, food allergies, leaky gut, ulcers, candida overgrowth are all a by-product of a system gone awry. Treatment (ie antibiotics) specific to any one condition may not provide a complete cure?

At present and for the past several years my attention is on the theory that if we can mimic how our prehistoric ancestors lived then we can be the best that we can be given genetic weakness'. Then you kind of springboard from there with additional treatments as needed. So I try to eat just animal flesh (never cold cuts)and vegetables and pumpkin seeds and 100% sprouted bread (once a grain sprouts its a vegetable?). No corn, white potato, soy, wheat, or any grains or any fibre products. Animal flesh is key for me and then only grass fed and wild caught products. So, like you, sugar in any form is out. Water and green tea are the only beverages.

That diet brought me to a great point. But over the years I've developed an antagonistic relationship with this nameless, faceless evil that is causing so much suffering. Every new discovery (ie SIBO, helicobacter)and treatment, that alleviates the suffering gets a standing ovation.

Take very good care of yourselves. Sharon

Hi Sophie & all:

I have a male friend who recently introduced me to some things that have helped his IBS, so I tried them and of course, they help sometimes but not all the time, as with all products for IBS. However, I was thrilled to have anything that helps and was very grateful to him for opening up to me in his admission of being an IBS sufferer.

So, a week or so later my husband & I run into he & his wife at a cocktail party. We have mutual friends, so we run into them frequently. His wife is a local forensic pathologist and is apparently well respected. So, I mentioned to her that Jim had told me about some great products for IBS and that I was really grateful that he passed on the information to me. She looked at me as if I had just thrown up on her and immediately turned & walked away. After I got over the initial shock of her reaction, I found her hubby and asked him what that was all about. He said she has always believed that it's all in his head and IBS does not really exist.

I immediately lost all respect for her as a doctor & as a human being. Just another example of a medical doctor and fellow human being that has no real soul. I have no desire to ever speak to her again and probably won't. However, I do hope that someday she will come to her senses, but I find that highly improbable. Fortunately, her husband & I continue to talk about our mutual condition, lending one another support, which we both benefit from.

All I can say to that Liz is Oh. My. God.

You know, one thing that I am trying to really recognise is that these kinds of remarks and reactions say much more about the person making them than they do about the IBS sufferer.

I mean, a doctor who tells his patient to look his disorder up on the internet where he could find all kinds of garbage information? A person who is so rude and full of her own certainty that she can't even bring herself to be civil at a party? These are not people I have a lot of respect for.

I think one thing we can try to do for ourselves as IBS sufferers is learn to think "Oh shut up you ignorant womble, your brain is the size of a neutron" when people come out with this crap!

Liz - I can't help wondering why your friend hasn't filed for divorce on the grounds of unreasonable behaviour! I don't think I'd be able to maintain a relationship with somebody who believed my IBS was 'all in my head'. Sure, my boyfriend occasionally leaves a little to be desired in the sympathy/empathy department, but at least I can be absolutely certain that he has never even entertained the idea that my symptoms are imaginary/psychosomatic. It was bad enough dealing with my mum's and dad's reactions:

Mum: The doctors have found nothing wrong with you. Your symptoms must be a manifestation of some inner unresolved psychological issues. You clearly need to see a psychoanalyst.

Dad (who, unlike my mum, did actually believe that my symptoms were 'real'): Don't be silly - how can it have something to do with eating the wrong type of food? Food is good - not harmful. Just take the pills your doctor gave you, and you'll be cured. (Of course the pills - loperamide and buscopan - were not designed to cure me, but only deal with the symptoms, and - sad to say - they did not deal with the symptoms very well either: in the case of loperamide making me feel worse, and, in the case of buscopan, making no difference whatsoever.)

I've probably just given my poor parents a much worse press than they deserve, because I know they both care about me very much and are usually very kind and compassionate, and it was only ignorance and lack of imagination making them say those things.

However, since then I have tended to avoid talking much with them about my health.

Anyway, the point is that you cannot choose your relatives, and kind of have to make the best of it - but when it comes to a husband or wife you certainly have a choice, and I just can't see myself making the choice to stay with somebody with the attitude of your friend's wife.

Of course, I don't know the whole story, and maybe it's not my place to comment.

I have spent hours musing over how otherwise intelligent and generally decent people can come up with the kinds of insensitive and callous reactions that IBS sufferers must all be familiar with. I reckon that it's got something to do with the human wish to avoid unnecessary pain/suffering. I mean, if you allow yourself fully to acknowledge how much someone close to you is suffering on a daily basis, given that you are pretty powerless to make them better this might cause you so much distress that you are unable to deal with it. So it's much easier to brush aside their suffering and pretend to yourself that it isn't as bad as all that, or that it's somehow psychologically self-inflicted (i.e. chosen by the sufferer themselves!). If you believe this, then you don't have to suffer the inevitable pain that comes from truly empathizing with another human being. I think it's the same self-protective impulse that makes people say that there's no point in giving money to charities that help homeless people because most of them really prefer to stay out on the streets! It's just a convenient way to absolve yourself of the responsibility of helping other people.

And as for some members of the medical profession - I reckon they give the 'all in your head' response when they are basically stumped, and rather than having the humility to admit that they don't know everything, and that the medical sciences still have a really long way to go, they try to blame the patient: 'We've done all the tests and there's nothing wrong with you. Just try to relax and calm down, and I'm sure your symptoms will go away.' They can't bear to entertain the thought that there may be something wrong with somebody that they haven't been able to cure. Much easier on their egos to believe that the person's illness is imaginary. Can't they see that in the same way that doctors 100 years ago knew loads less than doctors do now, doctors 100 years in the future may know loads more than doctors do today, and IBS may not even exist, but will be replaced by a number of recognized conditions that can be tested for and cured?

Idiots!

Who here, in the begining, just wished for a diagnosis? Anything that would explain what was happening to them. Now, years later, we find that as we become more knowledgable about our own disease (and I think that is the key, each of us all have different IBS) we find that having IBS tatoo'd on our foreheads actually closes more doors than when we were scrabbling for an answer, especially with the medical profesionals. The moment you utter those three letters you can see them glaze over, mentally planning what to watch on TV when they get home, while spouting the usual platitudes...

"It's something that has to be managed"

"Some foods, aggravate more than others"

And my all time favourite...

"If you find that certain foods bring on IBS symptoms then you should avoid them"

.....at that point I tend to look for the jar of leeches on the shelf behind them.

To update my progress from above (Dear Dr.), I have added lactose to the foods that 'should be avoided' aswell as any identifyable sugars. I had tried milk free diets before, however (and this applies to all exclusions I had tried previously) it was useless before as everything was masked by my sugar intake. Now I am free to experiment and making good progress.

I am currently free of all antacids (calcium and rimitidine) and I have kicked the buscopan tablets too. Next on the list will be the Clomiplorine and then I will be pill free (all in a matter of six weeks). Then I will gear myself up for another glorius NHS visit to present my progress and ask / demand a breath test to look for Bacterial Overgrowth.

The book I mentioned reckoned at least 20% of IBS cases could be like this, so if someone else reads this and discovers that stopping feeding the bacteria works for them, then I'll have helped one more person than any doctor I have ever visited.

Alan - I really identify with what you say about just having wished for a diagnosis at the very beginning. Every time I had a test, I just wanted the doctor to say, ‘Ah, yes. The results have come back, and you have such-and-such disease. Here, take this medication for 2 weeks and you’ll be cured.’ After a while, I realized that that wasn’t going to happen. And what really annoyed me was that every time I had a test for something and the result came back normal, the doctor would say (as if s/he expected me to be really pleased and relieved), ‘You’ll be happy to hear that the results are normal. You only have IBS.” ‘Only’ IBS! I think maybe ‘only’ is the wrong choice of vocabulary. Yes, I ‘only’ have a horrible condition that has severely reduced my quality of life, limits what and even when I can eat (how many of you have chosen to go hungry rather than eat something and then have to cope with the immediate onset of various awful symptoms?), and that, worst of all, is regarded by many people as merely a minor ailment, or, worse still, imaginary, or even something of a joke. OK, I’m not saying that I want to be suffering from a life-threatening or degenerative condition – of course I don’t want that. I’d take IBS any time. However that doesn’t mean I’m happy having IBS, or that there’s any ‘only’ about it.

Anyway, I’m almost 100% certain that if I can live long enough, there will come a time when IBS has been replaced by a number of known conditions that can be tested for and cured. (Like you say, each of us has a different IBS, and IBS is just a convenient umbrella term for a number of very different conditions that are only united by the fact that they have something to do with the gastrointestinal system and have as yet unknown causes.) When that time comes perhaps I will be able to have my old life back, if I haven’t been able to get it back already myself through my own efforts. (Like you, and many others, I am finding the medical profession, now that its members have been kind enough to reassure me that I only have IBS, has become largely an irrelevance.)

I too have noticed (and hate the fact) that IBS is a bit of a door-closer with the medical profession. It’s almost as though they see the diagnosis of IBS as an ending (‘Phew. The patient has IBS. That’s settled then. My job’s done.’) rather than a beginning. They tell us we have IBS, and then they leave us on our own to get on with it as best we can.

I read with interest what you said about how now that you have cut down on your sugar intake and dealt with one problem it is easier to identify which foods you are reacting to. You may be interested in reading ‘The complete guide to food allergy and intolerance’ by Jonathan Brostoff and Linda Gamlin, or indeed any books written by either of them. In fact, more than a year ago I asked my then GP for a referral to Professor Brostoff, which he was more than happy to provide, since Professor Brostoff only sees private, i.e. fee-paying(!), patients. I wanted to see him because I was almost 100% certain that my IBS had something to do with food intolerance, and yet, despite months of messing about with my diet, and even keeping a diary of what I ate each day, as well as my symptoms, I hadn’t got as far as I would have liked in identifying all the culprit foods. When I saw Professor Brostoff he said he wasn’t surprised. Some people who suffer from multiple food intolerances also have a gut-flora imbalance, often in the form of an overgrowth of yeast (N.B. I’m not talking about candida here!). Until this underlying issue is sorted out it is near impossible to figure out which foods are causing problems. At the time (this may have changed since then) there was no foolproof way of testing for a yeast overgrowth. However, any person suffering from the cluster of IBS-type symptoms that are associated with intestinal yeast-overgrowth may as well try eliminating sugar from their diet (which won’t do any harm, as sugar has no nutritional value) for a number of months, and see if there’s any improvement. Sugar is the favourite food of various yeasts, so starving them of sugar is one way of eliminating them, though it can take months, and some people have to go even further, cutting out all fruit, for example, or even limiting their intake of carbohydrates, which, after all, are converted into simple sugars in the body. This last dietary restriction is not recommended without professional supervision. Nystatin (a prescription drug) can sort out the problem more quickly. I don’t know if my GP would have been willing to prescribe it to me if I’d come up with the idea myself – I reckon he only did so because Professor Brostoff sent a note telling him to. Anyway there’s more about all this in the book.

Debbie, I think that you make some very good points there about why doctors and family alike brush off our symptoms so easily.

The "arguments" put forward by your parents - food is good not bad, IBS must be psychological - show such a complete lack of medical knowledge (food can kill people - just ask someone with a peanut allergy) that they should have died out long ago, especially among people with a modicum of intelligence and common sense. The fact that they haven't does suggest that there might be other factors in play, and other, possibly unconscious motives behind these apparently plain hurtful comments.

On the doctors front, here is a quote from "A New IBS Solution" by Dr Mark Pimentel:

"The medical community has a history of considering stress to be a possible factor in poorly understood conditions that are later deemed to have more practical causes. Perhaps the most famous example of this is the 'type A personality', routinely accepted by doctors as a strongly associated factor in heart disease and other cardiovascular conditions.

While stresses related to the lifestyles of people with such a personality can contribute to heart disease (as well as to many other disease conditions), we now know how important other factors such as diet, exercise, cholesterol, blood pressure, homocysteine levels, and even chronic infection are to heart health. Given this new knowledge, physicians today would be making a big mistake if stress were the only factor they treated in their heart patients."

As IBS sufferers, we need to remember that when uneducated family and friends decide they are experts on IBS, they're just talking nonsense, and when doctors tell us anything at all, what they are really saying is not "This is factual information about IBS", but "This is what we THINK about IBS right this moment, but ask me again in 10 years". Of course, doctors very rarely put it like that (they tend to be quite a confident bunch), but that's the truth.

Sophie,

The irony, of course, is you quote Dr. Pimentel, however I am still trying to find a doctor in the UK (well...North-East of Scotland) that will accept 'bacterial overgrowth'. I appear to be a classic case from that book, yet I cannot persuade the NHS to give me neomycin or rifaximin. Apparently, my life (and there's) will be easier if I "avoid sugar".

It may be my own fault as they get defensive when I remind them that about five years ago they were telling us to read up on IBS on the internet, now that they don't like what they hear they are restricting us to UK only sites.

I wouldn't call them confident, but cocky! Cocky suggests an air of insecurity. Try telling a doctor that you are right and they are wrong (or at least ill-informed) and you will know what I mean.

Five days ago, I finally made it to drug free status (ALL pills and antacids, nothing), so my next plan of attack is to wave said book around and explain how following it has allowed me to stop needing every drug they have ever prescribed me. Hopefully then they will be willing to consider a breath test and antibiotics if it comes up positive.

We live in hope!

Thanks for your feedback, Sophie. Everything you say chimes in with my own thinking. I wish I’d realized that doctors don’t necessarily know everything about everything (even though their air of confidence gives the impression that they do) when I first developed IBS and kept being passed from doctor to doctor. At the time, having had only positive experiences with members of the medical profession, largely because my health was fine, and whenever there was anything wrong with me, it was something VERY clear cut and treatable, like tonsillitis, I naively put all my trust in their professional judgment, and, I think, allowed myself to be treated extremely patronizingly and even insultingly. Here’s an example: When I told one doctor that my whole day revolved around the toilet, he asked me if I wasn’t sure whether I had OCD (some obsessive-compulsives do have hygiene-related toilet issues, so I guess that’s what he was referring to, without have listened carefully enough to what I had said to realize that this was clearly not the case, and I was talking about how my IBS symptoms were ruling my life and keeping me in the toilet for excessive amounts of time and much too often). N.B. I do not have OCD (fortunately, as I think that with IBS I have more than enough to cope with). Anyway, in future I have resolved that although I may not be able to prevent doctors from making idiotic comments, at least I don’t have to just accept them without challenging them any more.

Thanks for the Dr Pimentel quote. He sounds like a really sensible guy. It’s prompted me to think about reading his book and investigate SIBO as a factor in my own IBS.

I reckon that a huge change in attitudes to and treatment of IBS is on the way (thanks, in no small measure to people like him) and the next generation of people with IBS won’t have to suffer as we have. Oh, if only I’d been born 50 or 100 years later than I was!

I wish you all the best of luck, Alan. I think you are right to keep on at your GPs and be very persistent. In the end they may agree to your demands, if only to make you go away!

Debbie,

I have never met you, yet you seem to know me so well.....

I tried the respectful route but all it got me was a bunch of pills that I really didn't need. I am still drug free (3 weeks now) and still experimenting with food now that sugar isn't providing a smoke screen. Starches, breads, meat - good, sweet foods, lactose, vegatables (especially garlic) - bad. I am experimenting with amounts of foods, once I am comfortable I can argue a good case then I am going in armed with my book.

As an aside, a discussion about my new found health, has led to me lending the book to a neighbour, who thinks a bad gastro case has set him down the IBS / SIBO path. The Irony??? His brother is a doctor and he glazed over when asked about it.

So, please spread the word, Dr. Mark reckons 20% could be down to SIBO, my gut feeling (no pun intended) is it is way more than that.

If we can get everyone suffering to at least consider this as a cause then eventually the british medical proffesion will have to accept it.

Hi Alan. Glad to hear you just keep getting better. For whatever it's worth, you're probably doing better than patients being treated for SIBO by American doctors. According to the gastroenterologist that tested me, the only treatment is antibiotics which he readily prescribes. But it seems that six to 12 months after treatment has ceased the condition/symptoms reoccur and the doctor prescribes another round of antibiotics. But according to the doc the patients are still pleased with the results and prefer the antibiotics to the symptoms?

To me it seems like a disaster waiting to happen as the bacteria become ever more resistant and the rest of the patients immune system keeps taking a beating. I like your appoach better. Starve the bad bacteria, feed the good. Plus there's alot of substances people have tried and described on this website as providing good results such as grapefruit seed extract, black walnut extract, oregano oil.

Also, there's been some interesting technological breakthroughs recently with these drug resistant staph infections. Durable medical equipment manufacturers are coating certain surgical devices with silver to prevent contamination by bacteria. Its seems silver is deadly to bacteria? We have nasal sprays and cough drops here made with zinc (another heavy metal) that are supposed to shorten the duration of the common cold. Even though I would never take large doses of the heavy metals, I know that health food stores here offer "trace minerals" that contain gold, silver, copper, zinc, gallium etc. Long ago we probably got these trace mineral from plants that grew in soil rich in these substances. Or we actually used to consume the soil directly. I don't think cavemen washed their fruits and vegetables like we do now.

I can accept the idea of infection from organisms that are not part of our zoo and the need for antibiotics for such. But my understanding is that the organisms that cause SIBO have been residents of our guts (or ones that we have routinely fought off) for a very long time? Now suddenly they're getting out of hand? Why now? Why us?

Sharon

Hi Alan,

Thanks so much for drawing the SIBO theory to my attention. Encouraged by what I’ve been reading here, I ordered a copy of Dr Pimentel’s SIBO book too. For some reason, I hadn’t been at all familiar with the SIBO theory of IBS before, but it all seems to fit so perfectly, and sounds utterly plausible. Of course, I don’t know if SIBO is a factor in my own IBS, but I am certainly going to explore the possibility. And if, for me, it ends up being just another blind alley (and I sincerely hope that it isn’t!)*, never mind. There will almost certainly be some people out there who CAN benefit from treating their IBS as SIBO, just as you have done, so I will spread the word.

I know exactly what you mean about all the stupid prescription medications that the doctors are always trying to push onto people like us. I’ve always found that they have made me feel even worse, or, at best, have made not the slightest bit of difference. That all comes of just trying to treat the symptoms instead of attempting to cure the underlying condition, I guess.

I do get the impression that the SIBO theory, though still controversial, is more widely accepted in the US than here in Britain, where many doctors don’t even seem to have heard of it. I hope we will catch up eventually, and, like you say, if there’s anything any of us can do to make medical professionals aware of the theory then that can only be a positive thing.

*I have a tendency (completely understandable since I feel unwell every day) to get really excited whenever I discover any new theories to explain IBS, but, so far, nothing I’ve tried has eliminated my symptoms completely (though dietary modifications do seem to help in a limited kind of way), so I have to keep reminding myself not to get too carried away over Dr Mark Pimentel’s SIBO theory.

And – Hi Sharon,

It’s interesting to hear that there are other ways to treat SIBO than through antibiotics. I’m going to be investigating this further too.

Ok Debbie, that's just unacceptable that you feel sick everyday. What I find most interesting about the different theories as to what causes IBS - SIBO, candida overgrowth, leaky gut, allergies, food intolerances - is that the treatments are all pretty similar.

No sugar, flour, coffee, dairy, nuts and in general processed foods. In the beginning it probably has to be close to zero. I try to avoid corn, soy and potato as well. Any processed meat, even smoked turkey breast, makes me ill. But that's me.

Plus our bodies are probably so malnourished that it's not enough to just avoid, you also have to nourish I think. That means wild caught fish (if you're not allergic), lamb, eggs (if not allergic - I am), green vegetables, some fruit (I've read wild grown blueberries are good) some seeds and pure water. I can only tolerate pumpkin seeds. I don't use any condiments except a little sea salt, olive oil, very little red wine vinegar, little mustard maybe but that's it. I can also tolerate 100% sprouted bread but some people may not even be able to tolerate that. I eat raw salmon and raw snapper but many people won't.

Like Sophie and others on this site, I supplement with magnesium (glycinate or citrate form). And as of late I've been taking vitamin D3 which I think Sophie might take as well. I take other supplements but I won't even mention those because I take them experimentally to see what affect if any they might have.

So many IBS sufferers complain about garlic (me too), iceberg lettuce, tomatoes and peppers that maybe there is something to avoiding these foods as well. Even though technically they are all deemed healthy. I won't eat bacon or sausage or hot dogs even on a dare.

This diet resolved most of my IBS symptoms. I'm shooting for perfection - cast iron gut. I'm never constipated and diarreah (spelling?) only when I ingest certain substances - excedrin, ice cream, coffee or after eating at restaurants (which is almost never). Bloating now and then but so nothing compared to what it was.

Enough about me. You have your orders - don't give up. If not this diet then maybe antibiotics, colonics (not for me) or hypnosis or more fiber. Many people swear by these things.

Let us know....

Sharon

Thanks for all the info, Sharon. I’m still experimenting with diet, but patterns do seem to be emerging. Many of the usual suspects seem to upset me (most notably anything containing fructose, also glutinous grains, which I have completely given up on now), but then there are other things that upset other people that my body seems to be able to tolerate (potatoes, for example). It’s so nice, and encouraging, to hear that there are people out there who have managed to get almost completely better simply through diet and taking supplements. I was just wondering – do you tend mostly to avoid alcohol as well?

Actually I can't make a connection between potatoes and digestive problems either Debbie. I avoid them because of this diet that I'm following. And I don't avoid them like the plague either. And that's probably true for most of the foods I mentioned, except for processed meats that I never touch. No desire for them.

Its really a "diet of desperation." Its so sparse and until you get used to it tends to be unrewarding. Alcohol is an occasional treat and it seems to vary from time to time its affect on my system. But its a no no on the diet I'm following. Fish, lamb, beef (all minimally cooked), green vegetables, pumpkin seeds, 100% sprouted bread, some fruit and pure water make up the bulk (75% to 80%)of my diet. Mostly unseasoned. As of late I've added xylitol as a sweetener to grean tea. But I can't advocate it.

I've convinced myself that just about everyone with a chronic illness can benefit from some form of this diet. Not perfect but better. But if someone adopts only one part of the diet and leaves out say the protein from animal flesh then the diet is no longer balanced and probably wouldn't be as effective.

Debbie have you ever gotten to the point where you were eating practically nothing (for me it was rice crackers and applesauce) and still feeling awful. That was probably the silliest thing I ever did to myself. I was malnourished and just feeding the bad bacteria. No amount of metamucil, colonics, hypnotherapy or antibiotics could help me. Today I can eat three lamb chops, a bowl of organic vegetables, two slices of sprouted bread and feel great. I built up to this point. When I first started the diet everything still seemed to bother me.

Has anyone reading this site ever tried a similar diet and got worse??

Take care all. Sharon

Debbie

One thing to mention here, is the problems I had with 'experimenting' before.

I had tried evry exclusion under the sun, all to no avail (nothing was ever conclusive). What made me feel worse was whenever IBS came up in conversation, the innocently helpful person would try to solve all my problems by suggesting I don't eat something!

The lesson here is ONLY LISTEN TO YOUR OWN BODY (then possibly a dietition once you have a good idea). Since giving up sugar and lactose (same thing but you know what I mean) my appetite has returned with a vengence. At mealtimes I am surprising myself with the amount of food I am now shovelling away. Despite this I am still loosing weight. My body is adjusting all the time to these new conditions, and the signs are good...lethargy (brain fog) has gone, skin has cleared up, I am fighting off colds better, less aches and pains...a new lease of life really.

The best thing though is the clarity I now have when 'experimenting'. Tracing 'events' back to symptoms and then back to the offending foodstuff is now so easy. It would appear all I had to do was remove the smokescreen that was the underlying cause and now I am back on track.

As for alchohol, had my first beer experiment on Thursday, and the results weren't too hopeful. Basically what I would have expected from fluid packed with sugar. I need to try some spirits next, but my drink of choice was always Vodka and coke, so not really sure what I am going to do there.

Keep up the good fight, and pass the word on.

Cheers
ALAN

Alan – I know exactly what you mean about ‘experimenting’, since I have been doing it, to not much avail, for the past few years. I have a feeling that my ‘smokescreen’ is still there, kind of preventing me from making any kind of real headway. When I began on the food intolerance route (in the summer of 2005), I had read that gluten and dairy products typically upset a lot of people, so I figured I may as well begin there. I gave up dairy products, waited a week, and, since I felt no better, gave up glutinous grains as well, the following week. That did seem to make a noticeable difference (though, unfortunately, I was nowhere near better), and then (I would never advise anyone else to do this by the way), over the course of the next few months - in complete desperation - I continued to cut out different foodstuffs, one by one: corn, eggs, the deadly nightshades (potatoes, tomatoes, peppers, aubergines), tea, coffee, chocolate, alcohol, yeast, sugar, citrus fruits, chicken, beef … until, for a few months, all I was eating was most types of fruit, vegetable, meat and fish, as well as rice, soya, various vegetable oils, salt and pepper, and all I was drinking was water and herbal tea. And still I didn’t feel better!

In the end, I gave up and began eating most of the things I’d cut out again: maybe my underlying theory (that I was intolerant of various foods) was sound, but my methods certainly were not (Sharon - I think I stopped just short of a rice-crackers-and-applesauce situation).

Since then, I have been kind of muddling along, having minor breakthroughs along the way (where I realise with certainty that a particular food is either very bad for me or is completely safe), but never feeling completely well. I feel a bit like I’m blundering about in the dark most of the time.

I wonder now, reading your comments, Sharon, whether I didn’t have the right idea all along with my very-similar-to-a-caveperson’s diet as described above. Maybe all it needed was a little bit of tweaking, i.e. adding a few things, and removing others?

Both of you – how do you cope with the social aspects of following a strict (and mostly unconventional) diet? How do you explain it to people, and cope with the inevitable ignorant comments and assumptions? Or do you just avoid any situation where you would have to mention your dietary restrictions to anybody else? (I guess this would mean avoiding any social situation that involves eating and drinking – i.e. most of them!) The thing I found most trying when on my strict diet was other people’s reactions. I think a lot of people came to the conclusion that I was an anorexic, who’d hit on the idea of using IBS/food intolerance as a kind of smokescreen. I know I shouldn’t care what anybody thinks (what’s most important obviously is that I do all I can to make myself better), but I couldn’t help being upset by all this. It’s no good explaining things patiently to people, and hoping that they’ll do you the courtesy of listening and accepting what you say. Most people, once they have a fixed idea, see all your protestations to the contrary as further proof that they are right (the more strongly you deny have an eating disorder, the stronger becomes their assumption that you have one – otherwise why, they reason, would you be denying it so vehemently?), so you can never win!

P.S. I have ordered a 2-3 weeks supply of Vivonex Plus from what appears to be a highly reputable company in the States, and I intend to live on it (plus water) for a couple of weeks, and see what happens. If I do end up feeling better, I guess I can assume that my problem was fundamentally SIBO. If not, I guess it’s back to the drawing-board.

I would be loathe to take antibiotics (even if I were to accomplish the impossible and persuade a UK doctor to prescribe them for this kind of problem!), as I am allergic to penicillin, and, on the rare occasions when I have been prescribed other types of antibiotic (e.g. on having a tooth removed) I have always developed a rash, and then been advised to stop taking them. Also, I am afraid of precipitating other health problems, e.g. yeast overgrowth, through using them.

Let me know, Alan, if you’d like to hear how I get on. The first challenge is getting hold of the Vivonex. Perhaps a little irrationally, I am half expecting it not to arrive.

If it is safely delivered, and I do take it, and I do experience a dramatic improvement in my symptoms (lots of 'ifs' there!), I will probably continue on a diet low in the bacteria’s favourite foods indefinitely, kind of operating under the assumption that if SIBO could happen to me once, then there’s nothing to stop it happening again if I’m not careful …

But anyway, here I am getting carried away again. I must remind myself that there are no guarantees, firstly that the Vivonex will arrive, and secondly, that it will do any good!

Debbie, please keep us posted about the Vivonex. That was the route I was going to go just before the caveman diet. In theory it should work? You'll be getting all the nutrition your body needs without having to worry about food allergies and feeding the bad bacteria.

The caveman diet doesn't work for everyone. And I had to modify it to fit me. Animal flesh only works when its practically raw and wild caught. No farm raised fish and I rarely eat turkey or chicken. Supposedly food (all foods, even us)contain very specific enzymes that help the eater digest it. Cooking destroys alot of those enzymes. Result is poor digestion of that food - at least for me. And of course our body produces enzymes to help us digest food as well. But maybe my body is a poor producer and I really need the enzymes in the food to digest it and suck out all the vitamins and minerals and not leave any for the bad bacteria. I don't take enzymes (though people on this site do) because I believe that it's almost impossible to recreate that perfect balance of what's needed to digest food. So I rely on mother nature as much as possible and eat food in its raw state when possible. I brown meat on the outside to destroy as much bacteria as possible but leave the inside rare (can't do that with hamburger). There's a hundred nuances I can go into, like not being able to eat sunflower seeds or peas or peanuts or bananas, even though cavemen probably did.

Debbie, do you have a whole cluster of symptoms like Alan? I pretty much did and it was pretty much everyday. I knew I was doing something wrong and doing it everyday. It took a while to heal, with symptoms dropping off one by one. I truly believe you have to give your body the good stuff - omega 3, sunlight/D3, amino acids, minerals - almost everyday to heal.

Another resource you might want to check out is a book called "Eat Right for Your Blood Type." I can practically hear the screams. The author is very maligned. But I think he's on to something...maybe? He takes the caveman diet a step further. He believes that if you're blood type O then the caveman diet is for you. HOWEVER, if you're blood type A, then a vegetarian diet, with fish and soy, is more appropriate. Type Bs can eat dairy but never chicken??? He's very specific, breaking it down food by food. His theory is based on the evolution of our blood types - with type O being the original one, then A, then B, then AB. I don't know why, but it works for some people. Once again, to me his diet is only for the desperate, because you're eliminating so many normally healthy foods.

Lastly (finally) I rarely discuss(ed) my IBS with friends and family. That's me. I do what I have to do and I'm always easy on myself. When my symptoms were really bad I didn't venture far from home. And if I had to leave a party early and someone didn't understand...oh well. But I have a deep respect and sincere interest for other people's health conditions (and most people have something) and I think in turn they respect my limitations.

I no longer view my IBS and IC (interstitial cystitis) as diseases. They're my own personal lab rats that I get to experiment on. I control them, not the other way around. Even when they act up I treat them with a sportsman like attitude and come back at them with a vengence.

I love a challenge.

Hi Sharon,

I will definitely keep you posted about the Vivonex. Watch this space. Even if I don’t post for a while, keep checking, and I promise I will eventually. I don’t anticipate that I will begin the diet until just after Christmas, so it may be a while before I have any news.

I must say, one thing I am really looking forward to is having a real break - just for a few weeks - from having to concern myself with whether I am taking in enough calories and generally the correct balance of nutrients, etc. My current, very limited diet must be leaving me somewhat malnourished. It’s not really sustainable. Like you say, on any kind of restricted diet you end up eliminating many normally healthy, nutritious foods.

Oddly though, apart from my gastrointestinal symptoms, I do feel absolutely fine. And – in answer to your question – I have to say that in general I never suffer from any symptoms anywhere else in my body. This puzzles me a bit. I get the impression that most people with IBS usually suffer from at least some other problems too - headaches, brain-fog, fatigue, to name just a few.

Thanks for all the info, especially about enzymes and the blood type based diets. You’ve got a nice, clear way of explaining things. I have lots to think about. The main thing is knowing that even if the Vivonex doesn’t help, there are still other options I haven’t explored fully yet.

Thanks also for the info about how you deal with things on the social/interpersonal level. That’s really helpful and thought-provoking too. I think maybe when I feel that I am winning a little, it will give me a big boost, and I’ll be closer to taking the same kind of positive attitude to my IBS as you do.

Socially....I have a problem. I regularly have to socialise with clients and the last thing they want to hear about are my bowels. So in those situations (especially at this time of year) I have to grin and bear it, drink sparingly (if at all) and choose carefully from the menu.

With friends and family I take another route, when spotted avoiding something, my answer to the inevitable question is "It makes me Fart!". This normally does two things, keeps the dialog light (allows me to explain in a way that doesn't make me look like a paranoid phsyco, but more like someone who has suffered for many years and has now come to grips with this disease, basically, I am fixing it so I have been right all along) and opens up the room for an honest, incitefull discussion, as they now believe I might have something useful to say based on their own, or friend/family's symptoms.

On Vivonex, I had a chuckle at the thought of a Vivonex Christmas dinner. If it were me, knowing that I'd be detoxing with Vivonex, I'd be stuffing my face with anything my heart desired for Christmas, one final blowout if you will. Yes I'd be ill on boxing day, but hell, it'd be worth it. Then start the detox!

Please let us know how it goes.

ALAN

Thanks, Alan - that made me smile! I promise to keep you updated. Just watch this space. As I said, there may not be much to report for a little while, so things may go quiet for a bit, but I promise I will post again here with a progress report as soon as I have some news ...

I was hoping to begin my Vivonex diet tomorrow, but, frustratingly, I can’t, as the Vivonex hasn’t arrived yet, probably delayed in the Christmas post. I will post here again when I do begin the diet, hopefully within the next week or so …

Most of the Vivonex arrived yesterday - that’s 2 out of the 3 boxes that I ordered (the third, which was parcelled separately, will be delivered as soon as I’ve paid the customs charges). I began taking it today. I guess I’ll post again in a couple of weeks, to say what effect (if any!) I think it’s had. (There’s probably not much point in posting sooner than that, I suppose, because day-to-day fluctuations in how I’m feeling won’t really be of any significance.) However, if anyone has any specific questions in the meantime, please don’t hesitate to ask. I will check every couple of days, so you should get a response fairly quickly.

I hope I can last out 2 weeks – it really is awful stuff.

Debbie (and Alan) - yes, keep us posted! You're doing one of the most desperate of all measures. I have a good feeling that it will provide substantial relief. Recovery is generally a slow process...cell by cell, week after month.

And Sophie, you're really making alot of changes too..no? Homecooking, fresh fish? You have to keep us up to date too you know.

Joyful, healthy 08 everyone.
Sharon

Hi Sharon,

I have a very embarrassing confession to make – I only lasted one day!

I can’t quite describe how the Vivonex tastes and smells (I won’t be able to do it justice). Even when I drank it while holding my nose, every single sip was making me gag. When I was on my third packet (in the evening), I realized that even suffering from IBS for the rest of my life* would be preferable to taking this stuff for 2 weeks.

(The packets that you can flavour the Vivonex with appear to have been discontinued. I think maybe you can make up a flavouring yourself, using mostly glucose, and perhaps aspartame too – I guess this is something I could look into.)

*Which, of course, is not guaranteed – I have heard enough positive stories (here and elsewhere) to at least give me the hint of a hope that one day I will hit on something that can improve my health situation at least to some degree.

Anyway, I don’t feel very pleased with myself. I kind of wish I had kept the whole thing a secret, as it’s not much fun having to confess that after all the money I’ve spent and my high hopes, I've abandoned the whole project. Fortunately, apart from anybody reading this, I only told 4 other people about it.

Well, it goes without saying that, inspired by other people’s stories and experiences, my quest continues. I wish everybody reading this a very happy and HEALTHY 2008!

Debbie

Debbie, don't throw out those packets. They can be your emergency food when you're hungry and there's nothing but IBS triggers all around you. Do you have access (and the money) to food items like grass-fed beef, wild caught fish, 100% sprouted bread? There's even 100% sprouted cereal by Ezekiel. The problem is what to wet it with. I use a non dairy berry fruit smoothie - just enough to get it down. Fruit is very high in sugar so just a little will do you.

Are your symptoms as bad as ever? Any good days? What's your two most hated symptoms? Sharon

Hi Sharon,

I haven’t really investigated, but I’m quite likely to be able to buy the foods you mention locally, as we don’t want for organic/wholefood/speciality shops and farmers' markets near where I live. I think my symptoms are as bad as ever. I never go more than a few hours symptom-free. However, when I was on my strictest dietary regime (described in one of my posts above), I could sometimes go a whole day, or (rarely) a few days without any symptoms, so I must have been on to something. I’m probably going to try something similar again, with a few modifications, based on what I now know about SIBO. I thought very hard about my 2 most hated symptoms, and I couldn’t narrow it down to 2! So here are my 3 most hated symptoms:

1. Bloating – I’m always bloated to some degree or another, and my abdomen gradually becomes more distended and uncomfortable as the day goes on.

2. The constant feeling that I need to go to the toilet, even if I have only just been. I reckon that this is probably just some kind of illusion most of the time, i.e. my body is passing the wrong messages to my brain, or something.

3. Usually having to struggle and strain, even when I have diarrhoea, which is pretty much half the time.

I’d be very interested to know if anybody else experiences these last 2 symptoms, as they strike me as very bizarre, and whenever I read anything about IBS it’s always in terms of either diarrhoea or constipation, or an alternation, whereas these symptoms don’t quite seem to fit in any such neat category, as they seem to be a simultaneous combination of the two!

Debbie

Yes, that was me. I never realized how often people expel gas until I got married. So like you, as the day wore on, you get more bloated. Very slow or non-existent transit in the large intestine except in the morning, if I was lucky. Long ago I figured out a way of pushing the contents along by massaging. It could take as long as an hour but it worked. And like you, there were many times where the sensation is to go but the contents are churning back and forth causing cramping but not to the point of being able to go. If you picture the large intestine as an upside U (which it is) the contents would go back and forth at the top but never descend??? Plus the colon didn't pull the fluid out the way it should. And the top of the U runs right along under the middle of your rib cage so it's quite an annoying feeling. Is that where your bloating is or is it lower by the bikini line?

I'm about 85% better. More rhythmic motion through-out the course of the day so very little bloating and rarely churning anymore. The gastroenterologist/lecturer that set me on the right course stated that he doesn't care what's causing your problems - sibo, candida, IBS, allergies, leaky gut - the answer is always the same - just eat wild caught meat, vegetables, some fruit (berries) (no corn, wheat, sugar, dairy, oats, rice, barley, potato, soy, pop) and pure water. He also suggested filtering shower water??? That's what he would tell his patients and he would tell them to try it for one month and then come back to him. If they weren't greatly improved then he would run all the expensive tests they wanted him to.

I think he permits nuts and seeds but I"m supposedly allergic to nuts. Keep us posted on the new diet. Sharon

Ah - thanks, Sharon. I never really understood what was actually going on in my intestines to produce my symptoms, but your explanation about the waste matter going to and fro in the large intestine, but never actually getting anywhere fits so well.

In answer to your question, I'm afraid I can't quite pinpoint exactly where the bloating is. It's a very general sort of feeling, I guess.

I feel inspired by everything you've said. I'm back on a modified version of my caveperson diet - less fruit this time! I don't know if I will be able to avoid strictly all the foods you mention, but I will definitely keep them to a minimum and eat mainly meat, fish and (mostly raw) vegetables, organic wherever possible. I am also now supplementing with magnesium. When I was on my caveperson diet for a few months a year or so ago, I did feel better than I do now. I can't quite remember why I gave it up. Maybe because I didn't feel fully better, and therefore decided it wasn't worth all the effort. I don't know. However, my quality of life is so poor at the moment that I will go to any lengths (apart from taking the Vivonex, the thought of which still makes me gag!) to effect even a modest improvement.

Thank you so much for all your help! I always keep up with Sophie's blog, and often comment, so I am reachable that way. I will let you know what happens ...

(Maybe one day I will even have a 'happy tale' to tell!)

With my best wishes, Debbie

P.S. I managed to find some 100% sprouted wheat bread at a local organic food store. Have just had a couple of slices, and I'm surprised by how much I like it. It has a moist, dense texture, and a slightly sweet taste - a real bonus for somebody avoiding sugar like the plague!

Debbie, what's the name of the bread...Ezekiel? There's also New Berlin which tastes more like flour bread and I like it more than Ezekiel but I wonder how they get it so similar to regular bread using sprouted grain.

At any rate, I'm reading a book about Edgar Cayce and he was known to preach turning stumbling blocks into stepping stones. According to Cayce when the body is threatened and the person feels helpless there are different chemical secretions in the body than if the person responds to the situation as a challenge. Easier said than done. But still we should all (us IBS sufferers) take on this condition as a scientific challenge.

Be sure to use a good form of magnesium.

Take good care. Sharon

The brand name is ‘Sunnyvale’. I guess maybe Ezekiel may not be available in the UK, because I’ve never come across it here. The only ingredients are 100% sprouted organic wheat and filtered water. To me it tastes more like cake than bread!

Thanks, Sharon, for your words of inspiration and encouragement. Lately, I’m doing my best to accept the challenge of IBS in a sportsmanlike sort of way, though, like you say, it is easier said than done.

Hi, its Alan back again.

Debbie, the thing I can really relate to is the diarrhoea or constipation symptoms. As you say it really is a combination of the two. I have yet to hear a doctor say..."Do you sometimes have healthy stools followed immediately by raging diarrhoea?" and trying to describe having costipated diarrhoea just gets you that, where's my loony bin coupons look. They can only prescribe based on one or the other, and when you sucumb and commit one way or the other you are then doomed to keep pfizer, GSK et al in business for a very long time.

Since my Lactose and sugar embago I have noticed that I only get diarrhoea when I have sucumbed to a sugary treat. I have also noticed that my poor diet is causing me to go three days at a time before I get that magical sit down time. What is now happening is the lack of roughage means slow transit but the upset tummies caused by sugar (the afore mentioned book refers to toxins released by the bacteria eating the sugar) is creating movement so I get a good stool followed by diarrhoea.

So far this theory hold up to my own scrutiny. Attacks can be traced to that sneaky biscuit, that polite ice cream taken in company or the hidden garlic in a meal. If one happens at the beginning of a three day cycle, then there will be a lot of gas but there is unlikely to be a visit to the toilet. If it happens towards the end (when the colon is now full up) the 'churning' that happens forces a visit.

Hope this helps, and I dearly hope you find the offending foodstuffs soon.

ALAN

Hi Alan,

Thanks so much for posting. Ah, so it’s not just me! Never, in any of the many books, leaflets and websites about IBS have I found anyone describing this crazy diarrhoea/constipation-at-the-same-time thing. It makes it kind of impossible to find any pharmaceutical product that helps you to feel better, since they only treat one (and therefore exacerbate the other!). I’m starting to think that – ironically – it’s only when I inadvertently eat something that irritates my gut, that I’m able to have a struggle-free and reasonably healthy-looking bowel movement. I reckon this is because the irritation sets things off and stimulates a bowel movement (a kind of normal one, which would have turned into a dry, hard, constipated one, had it had to hang around in my gut for much longer, which is probably what it would have done, if I hadn’t eaten whatever hurried it out prematurely). But then I can’t enjoy that wonderful emptied-out feeling, because it’s immediately followed by pain, bloating and diarrhoea, with a horrible feeling of being constipated, (the diarrhoea is of the stupid struggle-necessitating kind, where more gas than stool comes out, because I guess my colon is now relatively empty and there isn’t much there for the muscles to push against).

I've also recently realized that due to a hypersensitivity of my gut and rectum (another manifestation of SIBO?), I often feel as if my rectum is full and I need to go to the toilet, when actually there is not much there to pass out. It means that I spend a long time in the toilet struggling pointlessly, in the hope of some relief, or in a state of maddening discomfort for hours at a time. It’s as if my brain is getting sent the wrong signals. I explained all this to a gastroenterologist I saw recently, and he said that a tricyclic antidepressant may give me some relief from all this because one of its side-effects is to alter (i.e. damp down) the brain’s perception/awareness of activity in the gut. Then, according to him, I wouldn’t feel the need to go to the toilet until my rectum was full enough to allow me to go relatively easily. I also wouldn’t be interpreting every contraction of my gut as a signal that I needed to empty my bowels, as I’d hopefully be less aware of them/not feel them at all. It kind of made sense to me. Until then, I’d never thought of asking for tricyclic antidepressants, as I thought they were primarily to treat pain, and I’d describe my predominant symptom as being extreme discomfort rather then pain, but I am seeing my GP to see what she thinks. This drug can apparently be heavy on the side effects, so I will have to try it out and see whether, on balance, it solves more problems than it causes. It can’t do any harm to try. I can always come off it, if it’s no good.

Of course, if I were to take this drug, it would do nothing to help cure my underlying problem (SIBO?), so I will have to continue restricting my diet, etc.

With my best wishes,

Debbie

Hi guys. I've always heard the theory that people with IBS are more sensitive/aware of the digestive system's otherwise normal functions. I might even have bought into that theory but for the fact that the whole rest of the world allegedly passes gas on average every hour. So what about those of us that don't? That air is trapped, builds up and is very uncomfortable. And I imagine it would be uncomfortable to anyone. So I don't think we have a heightened awareness of every gurgle. But maybe?

As far as emptying the rectum area, I didn't think the area was usually ever completely empty? Except maybe on rare occasion. If you've ever had a doctor check for blood in the stool with a digital sample from your rectum then it would seem, based on the doctor's confidence, that most of us have something there. Alot of people complain of incomplete evacuation but I think it's most noticeable after you go to the bathroom. But then within 10 minutes of leaving the bathroom it's kind of forgotten, no?

I don't like pain/discomfort anymore than anyone else. The problem is when you're trying to solve the mystery, pain is about the best indicator of whether or not you're doing something right or wrong.

Are you guys seeing any improvement with your new diets? Sharon

Hi Sharon,

Thanks so much for your post. Yes, during my conversation with this gastroenterologist, he said something about IBS being more about abnormal perception of normal function than about actual abnormal function, and I found this a bit dubious. You just have to look at an IBS person’s stools – whether they are constipated or have diarrhoea - to see that something definitely isn’t working properly. And also, a lot of people with IBS are noticeably bloated, so it can’t be that we just feel as if we are full of gas – we actually are.

In Dr Pimentel’s book, he mentions a substance, whose name I cannot remember, that increases hypersensitivity in the gut, whose production is stimulated by the excess gasses produced by the bacteria living in the small intestine. So I reckon many people who have IBS have 2 major problems in that their guts are functioning abnormally AND their guts are hypersensitive so that they suffer even more pain/discomfort due to the abnormal function than they would otherwise, including things like the feeling of incomplete evacuation (which, as you say, does disappear after 10 minutes or so). I think my feeling of constantly needing to go to the toilet (when I don’t really need to) is related to the incomplete evacuation thing somehow, in that it involves some kind of abnormal perception of activity in my gut/rectum. I’ve come to believe that my feeling of needing to go to the toilet, even, say, half an hour after I’ve already been, is due to some kind of abnormal perception because sometimes if I just sit out the discomfort, instead of going on an abortive visit to the toilet, it just disappears spontaneously after a few hours. If the rectum area is never supposed to be completely empty, I’m wondering whether maybe my brain is getting messages indicating it’s completely full, when actually it isn’t, and the amount of stool in there wouldn’t trouble somebody who didn’t have IBS, but due to this hypersensitivity, it gives me the sensation of needing to go to the toilet.

I was on a proper caveperson diet for about a week - only selected vegetables, meat, fish and eggs. I felt about 50% better, but very hungry and deprived. Then I went to see this gastroenterologist. My GP referred me because he wanted to have me tested for coeliac disease again, as he thought that maybe the first time I was tested - a few years ago - the results were somewhat skewed, as I was on a strictly gluten free diet at the time. I’m pretty sure the test will come back negative, but I thought I’d better go along. Anyway, the gastro guy said I should eat plenty of wheat for 2 weeks prior to the blood test, so that we can be certain this time. So I pretty much abandoned my diet, albeit temporarily.

When I first developed IBS, I refused all medication, because I wanted to observe carefully what effects different kinds of food had on my body, and I didn’t want medication to mask the symptoms. As you say, pain and discomfort are your body’s way of telling you that something is wrong and are therefore a useful tool.

However, now I am so demoralized and depressed that I‘ve weakened and I just want some relief. I suspect that the tricyclic anti-depressant will NOT work, but I think I’ll carry on taking it for a little while, as I don’t believe it has any effect on the actual function of the gut, so, even if it works by making me less uncomfortable, I will still be able to experiment with my diet in the confidence that I will be aware of whether I’m reacting to particular types of food, just by observing physical signs, like how bloated I am, how often I go to the toilet and what comes out when I go.

I’m not totally sure if anything I’ve said is correct, I’m just musing really. It’s always so helpful to hear other people’s comments, as they help me to fill in the gaps and evaluate my own theories about what’s going on.

With my best wishes, Debbie

Don't be demoralized and don't be depressed. Just because we all are doesn't mean you should be!

Hunger is always a good sign to me for some reason? And I don't blame you for wanting relief and I would do the same. I don't recall ever being offered one of the tricyclics.

Are you still taking the magnesium at night? Does that make any difference? 50% is a great first week improvement - good job. Keep going...for all of us. Sharon

Hi Sharon,

I began taking 400mg of magnesium per day and I think that was maybe too much, so I will have see what happens on a lower dose. In a way, I chose the wrong time to take it, because it was at the same time as making lots of dietary changes, so I don't know whether it was the magnesium speeding things up to the point where I had diarrhoea* (albeit of the non-urgent kind), or eating mostly vegetables, or both! I think, maybe a person has to make only one change at a time, to avoid muddling themselves up. Though when you feel awful, it's so tempting to try everything all at once!

*though less bloating and discomfort than usual

Thanks for your words of kindness and encouragement - it really does mean a lot.

Debbie

Yes, magnesium is tricky. I tried it first years ago (magnesium oxide)and swore never to use it in supplement form again. But then reading how depleted our food can be of this vital mineral I tried it again when the IBS was on the wane and it seems fine. I use citrate or glycinate or some chelated form and I believe it's best to make sure you have adequate calcium intake to balance it out.

I personally don't believe in too much supplementing until a person is feeling better on a healthy diet. Then you can start to add all kinds of supplements if you feel that sibo, candida, allergies are still a problem. I call it fine tuning.

One morning you'll wake up and go normally and then the next and you'll feel good all day. You'll still have bad moments but they resolve quicker and won't last into the next day and the next - at least mine did. Then you'll know you're making headway. It took me several years of tinkering after decades of so called IBS. I'm willing to bet you do it in a couple of months. Stay away from processed meat. Everything has to be cooked by you and nutrient dense - pumpkin seeds, lamb, fish, sprouted grain, pure water. It's late and snowing.

Take good care. Sharon

Now I know I'm weird!

It's been about three months since I cut out sugar (including lactose) and that is still going very well. I have spent this time investigating....how ill am I after ice cream, or cake or even tomatoe sauce? This investigating has narrowed my diet somewhat as it has led me to be careful with difficult to digest foods also (grains, hard veg etc...anything really that will reach the further reaches of the gut).

What has this left me with, well any meat, any simple carbs (white bread, pastry, potatoes, pasta), well boiled carrots, well cooked onions and rocket for greens (aruga if you are Atlanticlly challenged).

To shock everyone out there who are surviving on, or have ever tried the 'caveman' diet, my diet now consists of a lot of chicken sandwiches, pies and 'rowies' (a north east buttery pretty much full of pastry and fat).

I have lost a stone (14 lbs) in three months.

The reason I chose to have this gloat is to highlight the 'hunger' comments made by Debbie and Sharon earlier. Right now my body appears to be craving carbohydrates, I can't seem to get enough. My conclusion is that I used to eat so much sweet foods before, that going cold turkey on sugars has left a massive energy drain that need fullfilling. I am now buring carbs when previously my energy was coming from sugar, hence the hunger and hence the weight loss.

From my experience I would say you were onto a good thing Debbie! Your body responded, I think you should listen to it.

Before the replies come flooding in, I am going to see a dietician. I know I cannot sustain this without keeling over in five years. For the moment though I am enjoying living the dream....eating pies AND loosing weight!

I see it as compensation for never eating a biscuit (cookie - why am I correcting when we invented this language) ever again.

PS I believe in 'better living through chemistry', however we must all be sure that it actually IS resulting in better living and not just a) causing more problems or b) kidding ourselves that the pills are actually making a difference.

"Always throw your heart and sole into whatever you do.....just never forget to have fun too"

ALAN

Thanks for the update, Alan. It’s really good to hear how well things are going!

Debbie

Not sure if any of you are still out there (it's been months since the last post), but I started Vivonex yesterday as treatment for a bacterial overgrowth in my intestines (SIBO) diagnosed via lactulose breath test. I'll be on it for 14 days (only Vivonex and water allowed).

Yes, I agree with Debbie, the Vivonex tastes bad, so bad, but I was able to get the flavor packs that most people take with it - they're made by Nestle Nutrition and are available on their website, though I got them at the pharmacy that I got the Vivonex through. I found a way to make it moderately palatable that I have to share for others who may be finding this as hard as I am: I mix the water, Vivonex, and flavor pack (my favorite flavors are chocolate and cappuccino) and let it sit overnight before drinking it (it gets cold and creamier - more like a milkshake than powder in water - and the flavor from the flavor pack comes through a bit stronger than the Vivonex flavor). I also use double the dose of flavor packs (2 per serving of Vivonex) which was given the a-ok by my nurse and the pharmacist.

I'm only on day 2 and the 11 days ahead of me seem daunting (I'm so hungry and feel really weak and faint already!), but I'm going to stick with it. I really want to give myself the best possible shot.

I'll let this forum know how it goes. I'd love it if some new people who are reading this would chime in if they've also used Vivonex and felt crummy... What did you do to feel better? More energy? Not as hungry? Not as faint? I'm a little worried if this gets worse as the days go by.

Thanks,

Amanda

Hi Amanda,

I'm still here : )

I'm interested to hear about these flavour packs, and I don't think they would be too hard to get hold of, even in backward old England, where no doctors even seem to have heard of SIBO.

After all, I managed to get the Vivonex sent over from the States (albeit at great expense). And then I didn't even manage to take it for longer than a day! It has now been relegated to my loft, and I cannot think about it without shuddering.

From hearing about your experiences, I'm thinking that maybe one way to ease the Vivonex experience would be to take a couple of weeks off work. It would be awful to be hungry, weak and faint, AND have to be going about your normal daily activities as well.

In fact, I’d go one further than that, and say that the ideal way to take Vivonex would be via a tube to your stomach (that way you wouldn’t have to taste it!), lying in a hospital bed.

Actually, why not go all the way, and be put under a full anaesthetic for 2 weeks?

If I were a more enterprising, go-getting person, I’d set up a kind of private hospital, where people could pay to do just that, staffed by fully-qualified nurses and doctors, who would ensure that all patients would be perfectly safe and cared for. Desperate (rich!) people suffering from IBS could fly to it from all over the world.

If anyone wants to make a load of money, please feel free to steal my idea. All I ask in return is that you let me be one of your first patients … and, if possible, could you waive the fees?

Anyway, back to reality. Amanda - please do let me know how it goes ...

With my best wishes, Debbie

Hi all, good to see this one still proving popular. Thought I would update on my progress....

To update....last November I cut out ALL sugar, from simple glucose and dextrose through the fruits (fructose) right down to milk (lactose). Since then I have shown amazing recovery, brain fog lifted, skin much healthier, toilet habits much easier to predict, much less pain and discomfort and an all round sence of understanding what is happening inside me.

My one visit to the doctor since was a farse as I was told to "avoid sugar", some top quality advise there.

Since all the previous postings I have experimented with many foods and having about exhausted the usual suspects I figured it was time for another masachistic national health visit.

On to that in a minute, first the experiments....my latest discovery is cheese, seems to be the main culprit of lethargic weekends and brain fog. All sugars cause 'events', and the theory of "toxins" being released certainly fits my now trackable toilet habits. I am now able to pinpoint what and when was eaten to cause a particular symptom. For instance something eaten at lunch with sugar in it will cause me to burp in the afternoon, then it will all settle down for a while until after my evening meal when pain and discomfort sets in, followed by heartburn and copious wind, to then set up the finaly of smelly wind in bed (much to the discomfort of me and my long suffering wife). It doesn't end there though as in the morning bowel cramps start 'til I am eventually presented with the 'need' to go. This starts off healthy enough (no more details I am sure my fellow sufferers know what I mean) but is then followed (always) by less comfortable evacuation, it is like the stuff in me that was ok has been forced out by the toxin ridden stuff which is further back. Once that is done I feel fine again.

Sorry I went off on a tangent. Sugar is the main thing and as the days go by I am becoming more and more sensitive to the point where I can trace a ketchup sachet through my system. Oddly though the garlic family causes me no end of grief, my feeble brain does not have the capacity to draw a link between sugar and oinions so if anyone can tell me what I am missing then I would appreciate it.

So limited vegetables and no fruit, no sweets, cakes or biscuits, and now no cheese. I have survived on chicken sandwiches, pies and butteries, not healthy I know but until I am finished experimenting I will continue. My only treat is a small square of very, very dark chocolate.

The rewards though have been worth it, and as I said I thought it was time to put pressure on my doctor again.

I wanted to ask how we could find out what was going on in my digestive system and what could we do to confirm that sugar was a problem.

It is amazing how long these people can draw out telling you nothing. In fact this latest one congratulated me on getting so much in control (this was better than being condasended, but only just). Feeling dejected I point blank asked about the breath test which I was told was not something they did on the NHS, I asked about outside help but was talked away from dietitions or specialists.

The outcome is I go back this week for the standard tests (diabetise, Haly, vitimin deficency etc), all of which will just condenm me to that good old IBS stamp on the forehead.

Amanda, I really hope your Vivonex works, are you in the UK or the US? I ask as I just want someone in the UK to take this seriously.

Cheers

ALAN

P.S. You will see that this new research does explain the link between sugar and onions ...

Hi! Thanks for the responses.

A few topics to write back on:

TASTE OF VIVONEX -

Thought I'd update by starting off on a positive note: the body (and this is AMAZING) actually grows accustomed to the horrific taste of the Vivonex. I can actually drink it now with only 1 flavor packet (cappuccino & chocolate still my favorites; orange makes me want to throw the container at the wall, though my pharmacist says that's the most popular flavor!?!). Sometimes I drink it WITHOUT ANY flavoring at all (I do a little mind trick and think of it as cactus juice - my boyfriend's idea and it helps).

So, this is an amazing incredible mind-blowing development since I swear I thought I was NOT going to be able to do it. But the body does acclimate. But, do use ice! Cold is better! And don't drink it too fast (or you have to run to the bathroom a half hour later). And do carry gum! Aftertaste = bad (for you and those near you!).

Debbie, if your doc thinks it will work for you: I know you can do it! Believe me, I thought I'd NEVER get through it (I'm now at the end of Day 7).

WEAKNESS ON VIVONEX -

Here's the problem I am having: I can't seem to drink enough of it to keep me going. I'm supposed to do 5-6 packets a day and I'm averaging 5, but it's clearly not enough to feed my body and I can't imagine doing more than that in the span of a day! Even though each packet is 300 calories, so I shouldn't be starving, I'm super super faint and wear out after an hour outside of the house. When I drink another serving, I can tell I feel better almost immediately, but it wears off again.

I'm in otherwise pretty good shape and, even though I've been sick (SIBO and all the symptoms) for 9 months, I've not been as weak as I am now ever. For example: I coached a mere 1 hour volleyball session the other day and almost fainted (I mean REALLY almost fainted; thought people would have to call 911) - twice. It's scary. It was so scary.

Has anyone experienced this on Vivonex?

What's worse is my doc's office is going to be closed all of a sudden during the week I was scheduled to finish this and get my follow up lactulose breath test (after 14 days on Vivonex), so now I have to wait to see him until the next week and, thus, have to keep going on Vivonex until then. Meaning, I'll be on it for 21 days in total. In the interim, I start teaching a session of yoga and am utterly frightened I'm going to faint mid-class!

What can I do? Thoughts?

MISSING REAL FOOD ON VIVONEX -

On another very simple-human note: has anyone overcome their unbearable cravings for FOOD while on Vivonex? Even toast smells so good it drives me crazy.

YOU CAN DO IT -

Anyway, again Debbie, you CAN DO IT if that's what you want! Believe me, the Vivonex tasted HORRIBLE DISGUSTING UNBEARABLE to me on days 1 and 2 (and dare I say 3), but it's okay now, really. And you don't want to spend a lifetime having such a complex and pharmaceutical relationship to food if you can avoid it, right?

At least that's what I decided. Not that I'm sure the Vivonex will fix that in its entirety, but I didn't want to keep going on the road I was on without trying this.

By the way, in answer to your question, Alan: I'm in the US (my doc is at Cedars Sinai, as is everyone else's with SIBO it seems). :) And I'm also only in my late 20's... none of my friends even understand what the heck is going on with me. I was at a sushi dinner with 8 friends the other night, sipping on my Vivonex while everyone ate spectacular rolls in all colors and flavors, wondering how I ended up here. I feel so bad for anyone for whom food represents danger or discomfort. I've only been living like this for 9 months, but it steals one of the most beautiful and simple experiences of being a human being: to taste, to enjoy, to indulge in the cornucopia of foods at our finger tips! Good luck to all of us! To getting back the ease we used to have or to at least getting to a settled place where we have peace with what we can eat. The constant searching is what really scares me.

Okay, good luck everyone. I'll let you know how it goes... ??????

Hi Amanda,

Thanks so much for the update. It's amazing that the body grows accustomed to the taste of Vivonex. I'm not feeling brave enough to try it again yet, but your post is very encouraging, so maybe, just maybe, one day I will have another go, especially if I can get hold of the flavour packets. Thanks for all the tips about how to make it as palatable as possible. Forcing the Vivonex down day after day, as you have done, is so impressive. I speak as someone who has tasted it, and gave up after 1 day, deciding that I would rather have IBS for the rest of my life than take Vivonex for 14 days.

I have to confess that I was not told to take Vivonex by a doctor. Here in the UK, where things are very backward(!), no doctors seem even to have heard of SIBO. I just read about it, thought that I might have it, and decided that even if I didn't, it wouldn't do any harm to take Vivonex for a couple of weeks, and see what happened. If my symptoms cleared up, then I could assume that I had been suffering from SIBO. If they didn't, then I could assume that I hadn't been. I wouldn't have lost anything by it (except a lot of money!). I found a company in the States that would ship to the UK and ordered 2-3 weeks' worth. Then, to my eternal shame and embarrassment, I found I couldn't bear to take it.

I think other people on Vivonex have experienced the same feelings of weakness, dizziness and cravings for real food that you are experiencing. This adds to the impressiveness of your achievement. I wish you all the very best of luck, and I hope with all my heart that you will be completely cured. Please let us know the outcome.

I know exactly what you mean about the complex and pharmaceutical relationship with food that many people with IBS end up developing. It is so sad. In the days (only 3-4 years ago, though it seems like a lifetime!) when I could eat anything I liked, without giving it a moment's thought, I took this ability completely for granted. Now I pretty much have to watch everything that goes in my mouth. I think the thing I hate the most about this is that ignorant, unimaginative people tend to assume that a person like me must be suffering from an eating disorder and has come up with IBS as an elaborate decoy to throw everybody off the scent! Has that ever happened to anyone else reading this?

With my best wishes, Debbie

Hi

I wanted thank everyone for writting in comments for this site. Its a war zone with drs, trying to get any info about IBS. they just want to put you on antidepressants. when renee made her comment about SIBO. My problem was solved. went on the internet and bought this product SYMBION.Has anyone tried this product and did it work. Its a super probiotic. after three days the anxiety went away. I have had this more than a year. I still have inflamtion in my intesttines but in time it will go away. I'm on the sibo diet, thats helping to. thanks so much i feel good again. kathleen

All the docs I have been too are way worse. I kid you not.The docs I have been to say to me they don't know what I should do for my severe IBS and then walk out of the room.

I UNDERSTAND AND I FILL 4 ALL OF YOUIM IN SEVERE PAIN MOST DAYS EVEN RIGHT NOW MORE LATER HANG IN THERE EVERY ONE if you dont have bowel problems you just dont no .