Self-diagnosis

Forgive me if I'm wrong, but what I seem to glean from your post is that you are the only person on earth who could possibly suffer from something as bad as IBS and anyone else who even has the audacity to even consider themselves as having IBS or a gut disorder are simply a job. Superiority complex much?

How can you assume that someone doesn't "have a clue" when, to them, YOUR symptoms might seem trivial too.

One of the recurring themes I see on this blog is self-pity. There's nothing wrong with that; if you think your life sucks, then you have a right to feel sorry for yourself.

However, what crosses the line for me is that you expect others to take infinite amounts of self-pity on you. As you've said before, IBS is an invisible illness, so it's unrealistic and unfair to expect someone to treat you differently when you appear to be exactly like everyone else at face value.

The general idea I see here is that you believe you are the only person in the world who suffers from true IBS, everyone else is just making a mountain out of a molehill or faking it. Just like we can't see into your bodies to see the pain you feel, neither can you see into ours, and to presume most/all other people are "IBS inferiors" is a little too self-centric IMO.

Apologies for typo, I meant "joke" instead of "job" in the first paragraph.

Um, OK...I'm not really sure if you'll come back to read this, what with your obvious hatred for my poor pathetic little blog, but here goes anyway!

What I meant was certainly not that no-one else on earth could possibly suffer as much as me from IBS, or have IBS in the first place - I run a site called IBS Tales where I have proofread and edited hundreds and hundreds of IBS stories. I'm well aware that lots of people suffer just as much as me, and they often suffer more.

What causes them even greater suffering though is when people decide to adopt IBS as the label for any old bit of bloating or minor stomach ache they have - the "Oh yeah, I had IBS last weekend but now I'm fine". This leads to a real devaluing of what IBS actually is, and means that people with "pretend" IBS think that the real thing can be cured by a bit of relaxation or a few stomach pills. Which is clearly not the case.

To say that I am accusing everyone else with gut problems of "faking it" is to completely misread my post. I am accusing people with a bit of a bloating and zero knowledge of IBS as "faking it"; I have a huge amount of sympathy for anyone with genuine gut problems. Have you never encountered someone who has said "Oh yes, I have IBS too", and when you talk to them further what they mean by their "IBS" is that they get a stomach ache when they eat a bit much at Christmas, or diarrhea if they drink 10 pints of lager?

I dedicate a huge amount of time in running websites on behalf of genuine IBS sufferers, as well as trying to get more publicity for IBS and writing articles for the IBS Network. Why would I do that if I thought all of these people were just making a "mountain out of a molehill" and I was the only real sufferer on the planet?

And the self-pity thing...well, I try to make the blog funny as well, but maybe that didn't work for you...and yeah there probably is a lot of self-pity in this blog, but it's a blog about the absolute worst thing in my life, something that causes me a huge amount of pain (sorry if that sounds self-pitying - it's just the truth).

I'm not asking for "infinite amounts of self-pity" from others though (can you get self-pity from others? Hmmm), I'm just saying how I feel. Just by writing an entry about my pain that doesn't mean I'm asking for pity, does it? Do you think I should only write about my IBS when I have something positive to say? I'm a bit baffled really.

If it were a blog about my friends or family or work or anything else it would be much happier. And to be honest I've had a lot of people say that they appreciate someone who tells it how it is when it comes to living with IBS. My life doesn't suck, but my IBS certainly does - and this is an IBS blog.

Maybe you should write your own blog about IBS - do you think it would be full of fun? To be honest I'm not really sure what you want to see in an IBS blog if it isn't a truthful account of someone's symptoms and feelings about their IBS.

And yeah, IBS is an invisible illness, and so of course I don't expect the man in the street to know I have it. But I do expect a bit of consideration from people who've known that I've had IBS for years, and I expect that consideration on behalf of all other sufferers as well.

I'm going to chime in here and venture that Ron doesn't have IBS symptoms to great degree or at all, so, perhaps, he can't imagine that people's off-hand remarks about IBS "last weekend" or "last night" show a grand ignorance on the part of most people in the public. I do not read your blog, Sophie, as a poor-me blog. I have suffered from the disorder for almost 4 years now and know its potential for making one miserable. Given IBS's severity and relative commonality, I thought, upon initial diagnosis, that there would be more effective treatments to address this demon than I see represented on this website or anywhere. Sobering discovery. Why treatments are few or so underdeveloped is probably rooted in the fact that women tend to develop IBS much more often than men; the disorder overall has been trivialized because it's not real, it's a "woman's problem."

In any case, it bugs me, too, when people adopt IBS as their own without understanding its unpredictable and dismaying nature. But I'm learning pretty quickly that I can't take on everyone's ignorance, nor shall I. The people who matter in my life know I've got it and know the big deal that it really is. The rest, well, I have better things to do than wake them up.

Deary me... All sorts of assumptions could be made about a person from that kind of post, but it wouldn't be productive.

Ron - you have COMPLETELY missed the point & message of this post mate. To make such sweeping statements about Sophie, her opinions & thoughts, one would have to be a regular reader of this blog. This you cannot be - since (a) you seem to have great disdain for it (therefore why on earth would you bother?), and most importantly (b) you are accusing her of something she hasn't even come close to doing, ever.

NOWHERE in this post does she say others aren't suffering as much as her, and again, regular readers of this blog know that she never would, and respects every single person suffering from IBS & their personal experiences. She simply states she has issues with those people who SELF-DIAGNOSE, with both depression & IBS.

This view, this anger at those who, in particular, self-diagnose themselves with "IBS" after alcohol induced diarrhoea or a brief stomach upset, is completely understandable & should probably be nothing but applauded - IBS is NOT an illness which can self-diagnose, as much as anything because the only way to achieve diagnosis is through testing for many other illnesses, eliminating them one by one.

Those people who claim to have IBS but obviously do not, i.e. particularly those mentioned above, do nothing but reduce the amount of respect & sympathy the general public have for those of us who genuinely suffer from the illness, making them believe IBS is just occasional, mild stomach problems that we should just 'deal with'.

Beyond this, is simply dangerous to self-diagnose yourself with ANY illness - IBS & depression included - and doctors will tell you this 'til they're blue in the face. It is also utterly stupid - by doing so you may be eliminating the possibility that your illness will either (a) be diagnosed as what you believe it is & hopefully treated, or (b) diagnosed as something different, which can then be treated appropriately. You may be consigning yourself to suffering unneccessarily or even much worse.

Again, this is the only thing Sophie voiced any objection to, NOT those thousands of us with various symptoms & varying degrees of seriousness, which she more than anyone has read about in great detail.

The vast majority of us visit this site & read this blog because Sophie represents a genuine representation of what we go through on a daily basis, and presents her experiences & thoughts with a witty, intelligent & accurate tone which can lighten your mood, educate you, inspire you & much much more. And on behalf of the many of us, I suspect many many hundreds, who are genuine readers & actually understand what Sophie is saying - thankyou Sophie, we really do appreciate your efforts & insight...

It is VERY difficult not to feel "sorry" for one's self when we have this malady, never knowing when or where it will "rear up"...no pun intended. My IBS was brought on by rectal cancer and every day is a tremendous challenge. One thing that does keep me focused is the fact that I am still alive. My doctor told me I would have lived only 2-3 years without the surgery, so I slap myself periodically with that fact and try to pull myself together and just be thankful I was able to get out of the bed. I do constantly worry about what I will do when I grow older or cannot physically get to the bathroom by myself. I try to be brave and continue with life but it is very intimidating to make plans when you know you MUST be within 2-3 minutes of a restroom or serious distress will happen. This blog and website does give me comfort and serious and helpful information. Thank you for that!

Hi everyone. Does anyone think of the label IBS as ridiculous? I was diagnosed at 12 but by 18 I realized that there is no such thing as IBS and that it's really a catch all term when doctors find nothing specifically wrong ie inflammation, ulcers, celiac etc. So I say - let those people with twice a year stomach aches use that phrase. I think (note the think) after reading the Mercks Manual from front to back, that dysmotility would be more appropriate but still that term doesn't seem to address the riddle of our multi-faceted problems.

Today I finally got around to reading all of the IBS tales on this blog. Some of your symptoms are so SEVERE!!! Beyond my wildest fears. I only came close to those symptoms when I had an overgrowth of candida. Even the overgrowth (as opposed to a normal amount which everyone should have) is just another symptom of a body gone awry - no different than the fatigue, nausea, allergies, constipation, diarrhea, SIBO, leaky gut etc.

Lord, I want to see all of you get some improvement. ITS RIDICULOUS. If I were a doctor none of you would ever leave my care until you got better. I'm not talking perfect, just better!!!

I have to tell you guys the following because after 35 years of IBS (mild compared to most of you and worse than some), there's no doubt in my untrained, non MD mind that our modern diet is responsible for the worst of the worst symptoms. Alot of books and articles hint at this but the book "Restoring Your Digestive Health" pulls it all together. Plus I went to hear the author speak at a NOHA meeting. He's an MD (which I like - don't know why though). He said whenever he sees a new patient and they have non-specific long standing complaints (like most of us - meaning not bleeding from every orifice) he tells them to follow his primitive man diet for one month and if they're not better than he'll start running all those tests they beg him to perform. He thinks that whether you have IBS, constipation, gas, SIBO, leaky gut, dysmotility, the ANSWER is always no sugar, no grains (including corn or potato) no dairy and lots of protein (red, undercooked free range beef, lamb, cold water fish) and vegetables. Plus he recommends certain fermented foods and soil based probiotics.... but I (untrained me) questions this. Then if you really believe in this whole evolutionary theory of our maladaptation to our modern life, then read "Eat Right for Your Blood Type." So FASCINATING.

The bottom line (no matter what your blood type) is that none of us "IBS???" sufferers should be consuming sugar, bread (unless made with 100% sprouted grain -then its like a vegetable), or pasta or white potato or corn or even rice. Dairy is a no (unless you're a blood type B) in which case you should never have IBS it seems. And if you're a Blood type O (me) then you desperately need red meat (preferrably wild game) fish, vegetables, some fruit, some seeds (pumpkin, flax) pure water and that's it! No tea, no coffee, no soda. If man didn't consume it in large quantities 25,000 years ago don't eat it. Carry pumkin seeds with you like I do to avoid compliance problems.

This diet took care of the worst of my symptoms. It brought me back to 12 years of age when the only problem was bloating (air/gas)due to complete lack of colonic motility through the course of the day except in the morning when the gastro-colic reflex is strongest................ BUT interestingly, an article that Sophie posted last week led me to some research. In the article the researchers explain the results of their study which revealed that IBS-C sufferers show a decresed incidence of acetylcholine in their GI track while IBS-D showed an increased incidence of this substance. They believe that this choline is somehow tied to colonic motility. Well its seems you can't really buy acetylcholine and I don't know that it would translate to your body's own production of it anyways. Just like with depression, they don't give people serotonin but rather they give them medicine that inhibits the brains uptake of serotonin and or dopamine. At any rate, I did find some articles that indicate that acetyl L carnitine is a precursor to our bodies formation of acetylcholine. Normally I wouldn't even mention a product to anyone until I've tried it for five years but its the only product (and I've tried dozens of pro-motilty products) that's even made a dent in my motility.

No one with the severe symptoms I've been reading on this blog should try any supplement until the worst of the worst is under control.

Remember, the above diet is not a cure for IBS, at least I don't think so. No more than if you had a broken leg. But who's gonna heal faster from a broken leg, a caveman eating meat and vegetables and berries or a chick eating crackers and tea and white rice and tiramisu?

Many thanks to Kirsten, Caroline and Patricia for your comments. I was a bit taken aback by Ron's remarks...I do write this blog for myself as well as for you guys, and so it's bound to be a bit self-centred I'm afraid, but I hope not too much. I suspect he may be a "hit and run" commenter and he just felt like venting his spleen, and now we won't hear from him again...oh well.

Hi Sharon - lots of points you make there! I would definitely agree that IBS is still a "catch-all" or umbrella diagnosis, and this does sometimes result in the ridiculous situation where someone who has had their glalbladder removed and suffers from bile-related diarrhea is told they have exactly the same illness as someone who has had food poisoning and then gets intractable constipation, for example.

The docs are doing better in making sub-categories for IBS (post-infectious IBS being one of the most studied categories) but there's still a way to go.

However, the research has found a number of things which seem to be common to IBS sufferers, from abnormalities in the way the gut works (reflexes, brain-gut interaction etc) to low-level inflammation in the gut, so I do think that we can now begin to say that IBS is a specific entity in and of itself, it's just that our understanding of it is still in its infancy.

You mention both candida and the "Eat Right for Your Blood Type" diet, and I'm afraid I've never seen evidence that either of these things are really relevant to IBS. How were you diagnosed as having an overgrowth of candida? There have been a few clinical studies that suggest candida could be a factor in IBS, but nothing convincing.

And the blood type thing, I dont know...again I've never seen any evidence to suggest IBS is remotely connected to blood types.

I think we have to be careful about drawing conclusions about the real cause for improvements we see in ourselves...for example, I tend to improve when I avoid gluten. But is that because I am intolerant of gluten, similar to celiac sufferers? Or because I have candida? Or because my blood type dictates what I can eat? Or because I am simply allergic to an ingredient in the bread I would otherwise eat?

The only way to really test these things is through proper clinical trials (and of course that takes time and costs money). In the meantime of course if it's helping you then that's great...but it may not have anything to do with your blood!

Sophie, you're brilliant and very knowledgable. Much more than I. I never focused on IBS, at least not since I was 18 because it was meaningless to me. I researched everything else from arthritis to Crohns to allergies to leaky gut and candida because I felt they're all pieces of a puzzle. For a while it seemed leaky gut was the root of all evil, leading to arthritis, IBS(?), fibromyalgia(?). Then I'd revert back to allergies being the root of all evil or at least food intolerances. I always believed that there was a common root cause that would manifest itself in different ways in genetically different people.

Candida, like SIBO, is just one more ill effect from a system gone awry. For me Candida is a love/hate thing. My dentist told me that a good lot of it in the mouth will prevent cavities because the yeast cannabalizes the bacteria that causes decay??? I was diagnosed with the overgrowth with a much maligned blood test for antibodies. To tell you the truth, I don't know that the yeast really overgrows or maybe I'm just sensitive to the small amount that is present in me and everyone. After I felt better I was retested and the antibodies were in the so-called normal range. I still had/have IBS. It didn't cure the IBS nor do I think it caused it. I just feel better when the antibodies are low. When I lose my appetite and have no energy (not really IBS symptoms) I get tested and I'm usually high again. Lord I was so sick that first time! My GI doc told me to try metamucil in wafer form - plain or cinnamon.

When I read something and it makes sense in the big scheme of things I try it. Even when it is somewhat risky. Nothing ever helped or really made sense. The whole primitive man, evolutionary concept makes so much sense to me. I had to try it. Unlike fiber and probiotics and enzymes and Zelnorm, the primitive man diet never made me feel worse. Some holistic practitioners will tell you that you have to feel worse to feel better. I'm skeptical. The diet is a good foundation - I think. The books I mentioned explain it so much better than I could ever. Plus they're fascinating and engrossing.

Sophie, I had to share all this information just in case someone might benefit. I'm so glad you shared that article with us. The acetylcholine connection made my mouth drop open. Right now doctors are trying Acetyl L Carnitine in divided doses for AIDS patients to improve energy levels. I believe that carnitine is an amino acid - probably found in food - probably meat. But supposedly our grain fed (not grass fed) cows and vegetables from mineral depleted soil are so lacking in what our bodies need and are used to that we have to supplement.

By the way, when I first started the diet I would eat bacon, hot dogs, thinking hey its meat. Even Elaine Gottschall and her SCD diet allow it. It was terrible for me. Even smoked turkey or smoked salmon used to cause the IBS to rear its ugly head. But everyone is different - right? Not exactly. We all evolved from Blood Type O primitive man in Africa. Our common ancestors all ate wild game and wild grown vegetables for hundreds of thousands of years - maybe almost a million years if we go back to prehistoric man. The past 15,000 years have seen the advent of cultivation and domestication of animals. 15,000 is the blink of an eye compared to a million. I think our bodies can't handle dairy and grains 12 times a day (and climbing) with little or no meat or vegetables. Maybe, just maybe that's what has caused this rise in auto-immune diseases or at least makes them worse or causes their early on-set.

Now I'm just ranting.

All of these comments are so helpful and this website is a safe haven to lament the problems we face. I know that having my sypmtoms produced by rectal cancer, my insides are a mess.. I did not go through the same process that all of you have encountered. At least I have a direct reason for my distress. My doctor did tell me a cure for my chronic IBS-D, if I could not take it anymore.. I could have a bag put back in, that is a colostomy! My distress has been so bad that on occassion I have considered it then remembered when I had the temporary ileostomy while my colon "healed" from rectal cancer surgery and all the problems I had with that...a yeast infection, etc. But at least, with the bag, you are in some control over bathroom visits. My cancer doctor told me our intestines do not like to be "messed with". When I told him my distress...going to the bathroom 20-30 times a day, he said I would be facing the same issues as IBS sufferers. Sure enough, your issues are my issues. He didn't offer much help but my primary care physician has taken me on as his "project" and has committed to help me. I took him a list of meds you listed on this site and he has reviewed them and given several for me to try. The first ones offered little help, then we switched to sucralfate, generic name, which is actually an ulcer/esophogus drug but it has been a godsend. It changed the texture of "stuff" and allows for a much more pleasant life. He also gave me hysocyamine (generic name) for the cramps that will occur when you have those really bad times. What a blessing. I have been on them for over 3 weeks now and though my life is not "normal" it is certainly more tolerable.

I think what your comments are a little out of proportion.there are many people suffering with undiagnosed Ibs.Also doctors working in the NHS are and do make many mistakes.I was diagnosed with Ibs 10 years ago I was an outpatient for 5 years at the local NHS hospital,after much drug taking I was still suffering.I then did my own research and discovered that I have stomach dysmotility,and finally I am much better.no thanks to NHS doctors.

I have a huge amount of sympathy for people who have undiagnosed IBS, or are failed by the NHS. I have no sympathy for people who get diarrhea twice a year and decide they have IBS because they read about it once in their newspaper.

For Sophie,
Hi, I have actually been diagnosed with IBS, which has also led to urinary tract infections so bad that I have been hospitalised for passing vast amounts of blood through my urine. (believe me when i say...it hurts...alot, and i have given birth without any pain killers, so i know what im talking about!) It seems that alot of the people responding to your comments don't have a clue what they are talking about. You obviously do, as you actually have ibs. The words of wisdom that i have to offer to all the hypocondriacts who are brass enough to CLAIM that they suffer from it, but haven't actually been diagnosed...visit the doctor or get a life! Mere stomach cramps dont even come close to the pain or inconvenience that we suffer as a result. You are making a joke out of it. I only wish I didn't have it...then i guess the joke would seem a whole lot funnier to me!!!
Keep up with the hard work Sophie...I totally back you 100%

I hope I'm not interrupting and actually just crossed this site while looking for help with some emotional issues I'm having, but I would just like to say that;
1) I empathise with all of you and,
2) I'm very glad you ripped Ron a new one (geez, you give a guy a keyboard...)
Hope they find better help for you
(and now I'll continue looking for mine)

Dear Sophie:

I agree 100% with you. Self-diagnosis is very dangerous, anybody could kill themselves thinking that they have something probably they don't. Before I was diagnosed formally with celiac disease, my gastroenterologist told me
that probably I had IBS. I went to the store and I bought a book on IBS. I read the book and still something told me that that was not what I had.

Even I started eating things to avoid IBS . When they did the endoscopy and blood tests, my God, I had celiac disease!!! It was shocking. So, my lesson was not to start imagining, because if I start imagining, then, I would need to see a psychiatrist, not a gastroenterologist. To the people, out there: Please, advocate really for your health. Keep going to see the doctor and insisting, if you feel sick; but never leave it to your imagination because at the end you may be losing, it could cost you your life, that is.

And if you do not have the money to see a doc., do not imagine anything; please, go to welfare in your city and ask them to put you in their health insurance. Even there are hospitals in your cities where you can pay a monthly amount to see a physician. So, have faith and you will find a good physician. With love, celiac disease patient.