OK - here's my letter of response to the doctor who sent in comments about my Top 10 Stupid Things to Say to an IBS Sufferer article. I'm also sending this letter to the IBS Network, who published my article and the doctor's subsequent comments. And if anyone reading this has any comments I would love to hear them - just click where it says 'comments' at the end of this blog entry and let me know what you think!
Dear IBS Network,
I'd like to thank everyone who responded to my article about the Top 10 Stupid Things Said to IBS Sufferers. I was very pleased to get such a good response from other sufferers, and to know that it's not just me who is upset - and sometimes completely baffled - by the things that people come out with!
I would also like to respond to the comments made by Dr JA in the March issue of Gut Reaction. Firstly, she pointed out that my Stupid Thing to Say number six, "Why don't you go to a doctor?", was actually an entirely appropriate thing to say to sufferers who had not received a definitive diagnosis of IBS.
I completely agree with this, and I hope that the article made it clear that "Why don't you go to a doctor?" is only a stupid thing to say to a long-term IBS sufferer who has in fact been to 20 doctors, 19 of whom have prescribed Colpermin.
Secondly, Dr JA also said: "I read with interest Sophie Lee's article. She seems to be a very angry lady and I feel that hypnotherapy may be of help for her to work through and release those pent-up emotions as they could be affecting her gut problems."
While I'd like to thank Dr JA for her suggestion, I did want to point out that not all of the anger was mine - a lot of the indignation was on behalf of the hundreds of IBS sufferers I hear from each month, many of whom are in despair at the way non-sufferers and doctors talk to them.
Some quotes I didn't have space for include "It's a women's problem, just don't wear tight clothes" and "Isn't the pain and diarrhea worth it for a special night out?" Both of these insights came from the very people who IBS sufferers rely on to help them: doctors.
Unfortunately, by immediately focusing on the idea that removing my apparent anger and "pent-up emotions" will help to treat my IBS, Dr J also highlights another reason why IBS sufferers sometimes get so frustrated. It is a story that I have heard from many, many sufferers. I call it the IBS Catch-22, and it goes something like this:
Patient: Doctor, I have been in pain for so long now with my IBS, I feel so angry/ anxious/stressed.
Doctor: Yes, your anger/anxiety/stress is causing your IBS symptoms; perhaps you could consider psychotherapy/counselling/a fortnight in Barbados.
Patient: But doctor, before I began suffering from IBS I wasn't angry or stressed at all, I lived a perfectly normal, happy life. It's the IBS pain that is making me angry and stressed. Can't we look for a solution to the pain, not the resulting emotions?
Doctor: No, because it is your emotions that are causing your IBS.
Patient: But I've only become angry after years and years of suffering, after years of being told that I have to learn to live with it, after visiting 20 doctors and having 19 of them prescribe Colpermin. And there's no correlation between the strength of my emotions and the severity of my symptoms. My IBS is as severe today as it was 10 years ago. It doesn't make sense.
Doctor: Ah - I see that you are becoming more emotional as we talk about this. Indeed, you seem very reluctant to accept the fact that your emotions are causing your IBS. This shows that you are repressing your feelings, and is a further indication that your pent-up emotions are in fact causing your IBS.
Patient: So you are saying that my overly emotional state is causing my IBS?
Doctor: Yes.
Patient: And the more I deny this, and the angrier I get, the more it proves your theory?
Doctor: Yes, that's right.
Patient: But how can I disprove your theory if the very act of arguing with the theory actually proves the theory?
Doctor: You can't I'm afraid. Sorry.
Patient: Isn't that a bit unfair?
Doctor: Oh yes. It's some catch, that IBS Catch-22.
Patient: ?!?!
The IBS Catch-22 needs to be put out of its misery. Theories of IBS causation are moving further and further from a psychological model with each passing year, and the leading gastrointestinal institutions of the world, including the International Foundation for Functional Gastrointestinal Disorders, now state categorically that IBS is not a psychological or psychiatric disorder, nor a disorder caused by stress.
I believe it is time that IBS patients were allowed to express strong emotions, emotions which are often related to years of dismissive and inadequate medical care, without having their feelings promptly identified as a cause of their IBS, rather than a result.
Sophie Lee
Editor, ibstales.com
Dear Sophie,
Will my doctor actually prescribe a week in Barbados for the betterment of my mental health and therefore my colon? How lovely.
I know your frustration and anger and have indeed felt your pain. (well, my IBS version of it.) I truly believe that had I continued to seek dr after dr and tried drug after drug, I would have made my symptoms worse rather than better.
As someone who usually argues with medical folks anyway, I did not fill the first prescription from years ago when I was officially "diagnosed." (I'd pretty much already self-diagnosed it.) I was given an oh so not-helpful pamphlet instructing me to log what I ate (when,where, & how-much; timeofday; timeofmonth [could be hormones, you know], emotional-state-at-time [how about, hungry but worried?]); instructions not get stressed, or over tired, or overly anything; overly excited, overly happy, overly busy; take peppermint; exercise, but not too much. Log your poops: how much, timeofday, timeofmonth, how often, sizeshapetexture, pain/nopain, etc. How can any person do all that, and then write it down?
I couldn't. I confess I did a food-log "lite" for about three days which was highly inaccurate, then I dumped it.
I admire you for persisting with the doctors, they're been in the dark on this one for so very long. At least a bit of progress is being made recently, as far as medical "acceptance."
The loop of stress=IBS=stress=IBS (should we shorten this to the stress/BS loop?), in other words blaming the patient, reminds me of Freud saying women are hysterical because they are women, because they are hysterical. Hyster = uterus, so women are hysterical because they are women who have a uterus. Enough!!
Dump the dumb doctors, I say, and find someone who respects you as a patient with real health concerns and complaints of symptoms that are infringing on your right to live a life without constant pain. Maybe when doctors start losing their patients and therefore income, they'll start listening. Money talks. And definitely in my book, with IBS, bull**** walks! (censor as needed)
Your hedgehog in California
Hi Sophie & all
It does seem IBS sufferers will remain in this catch-22 situation until they say enough is enough. Well done to you Sophie!
However, I have to add to the other side of the argument, that IBS is a psychological condition.
Last week I had a very nasty viral infection - high temperature etc. It started as a cold two weeks ago. During the whole 10 days I was ill I did not suffer any of my IBS symptoms. This is ALWAYS the case when I am ill.
As soon as I returned to work on Wednesday, my symptoms kicked back in by Thursday morning. So, when I was off work and ill, no IBS. When well and back to work, IBS raging. This is to big a coincidence to say it's not down to my emotional state/stress etc. Why when I am ill do I not get IBS symptoms? It's as if my body is too busy fighting the infection to cause the IBS. Surely this must indicate a psychological cause?
Problem is this - I don't believe I'm not a nervous or stressed person. I don't have a stressful job. So, when the doctor says the usual about not getting stressed and so forth, what am I supposed to do? I'm just living my life like everyone else!!
As a side note - I have been following my food intolerance diet for a few weeks now and do feel healthier for it. No difference to my IBS yet, though. But, remaining patient.
Ellie
ps sorry about any spelling mistakes!
Dear Sophie,
I agree completely with everything you have said!
Changing the subject to something more positive. I have had the York test (I actually used Cambridge Nutritional Science) in your recommendation and it does appear to have identified alot of things I hadn't thought of (like rice, soya, cola nut and eggs). So we'll see how it goes!
There is a paper on Cambridge Nutritional Science in which a study demonstrated that people who avoided foods recommended to avoid had improvements in their IBS compared to those who were given a "sham" diet (with made up foods to avoid). It makes interesting reading if you are interested in that sort of thing.
Anyway, take care.
David
Hi Ellie - I completely agree that stressful stuff like work can make IBS symptoms flare up, no doubt about it. But I think it's important to differentiate between something that exacerbates IBS or brings on the symptoms, and something that truly "causes" IBS.
If an asthma sufferer gets stressed it will often bring on an asthma attack - but stress isn't the cause of asthma, stress just brings out the underlying symptoms.
In the case of IBS, even healthy people get diarrhea when they're nervous or stressed out, and the same goes for IBS sufferers. But that doesn't mean that IBS is a psychological condition, it just means that IBS, like most medical conditions, is affected by our emotional state. And I believe that doctors should give the emotional aspect of IBS about as much importance as they would when treating medical conditions such as asthma, diabetes and so on. And I bet that a diabetes sufferer never gets to hear "If we just take a look at your pent-up emotions we'll do wonders for your insulin levels".
This is a quote from the International Foundation for Functional Digestive Disorders:
"Because of the connection between the brain and the gut, symptoms in some individuals can be exacerbated or triggered by stress."
There have been many studies which look at this brain-gut connection in IBS sufferers, and they've found that there is a definite difference in the way it works in IBS sufferers, with our colons reacting more to stimuli than a normal colon, and a kind of 'communication breakdown' between nerves and muscles.
Sorry to waffle on for so long - all I really wanted to say is that I absolutely agree that stress and emotions can affect IBS - but that doesn't mean IBS is psychological, and my opinion is that trying to rid IBS sufferers of their "pent-up emotions" is about as helpful as trying to rid an asthma sufferer of THEIR pent-up emotions.
In the past there has been far too much emphasis on looking at stress and emotional "neuroses" as the cause of IBS, but things are finally moving away from that now, and theories of food intolerance, intestinal dysbiosis and bacterial problems, and complex problems within the brain-gut connection, are gaining more ground every day.
Stomach ulcer sufferers were told for years and years that their ulcers were caused by stress, until one doctor discovered that most ulcers were actually caused by an infection, and all the other doctors went "Ooops!".
Hi David - glad to hear you took the test, and I really hope it works out for you. It's interesting that some of your foods sound similar to mine - I'd love to get 1,000 results from IBS sufferers and compare them.
And that's an interesting study you mention, I'll try to find a link online.
Hi Sophie
I absolutely agree when you say that telling IBS sufferers to get rid of their pent up emotions is no help whatsoever. I am sure that most IBS sufferers lead perfectly normal lives and to follow the usual medical advice would probably mean becoming hermits (no work, no social life and so on). I have nothing but praise and admiration for all my fellow IBS sufferers who still, despite often constant pain and embarrassement, continue to work and lead productive lives.
I also agree that something as simple as the stress of work (even if by anyones standard it isn't 'stressful' work) can trigger an episode. The point I was trying to make was that everytime I am ill (i.e. I have a cold) I do not suffer my IBS symptoms, EVEN when I am at work. As soon as I am better, the symptoms reappear. So, while I agree that IBS may not have a pyschological cause, there is something more at work here than food intolerances/bacterial infections. Which, I guess, was the point you were trying to make.
I guess what I need is an adequate explanation for why when I am ill I suffer no IBS symptoms, EVEN if I am at work. If IBS is caused by food intolerances/bacterial infections and so on, how can the body simply switch off from it? Surely, whilst trying to establish the true causes, we also need to keep this in mind as well?
I know I am probably coming at this from the wrong angle. On the other side of the coin, to use the cliche, I can have an IBS attack when I am at home, day off and perfectly relaxed! So, in that case it is reasonable to believe stress was not the cause!
At the moment I feel like I am trying to make sense of very different and confusing signals!
On a more positive note, whilst cutting out my intolerant foods has not removed my IBS symptoms completely (wishful thinking!), I have in the last few days started to notice small improvements. Whilst I have still needed to take a peppermint tablet before starting work on an early shift, I am finding that it has been enough to stop a full blown attack that day. Ordinarily, once my IBS starts theres no stopping it. Also, my stomach isn't as bloated and I do feel alot healthier. I also seem to be finding it a lot easier to isolate problems foods. Because I am not feeling unwell all the time, when I do eat something that disagrees with me I certainly know about it! Perhaps the patience is starting to pay off?
Ellie
Ellie - I think we're pretty much on the same page about this. I do agree that there is a psychological component to IBS, and I certainly agree with you when you say that no current theory explains everything about IBS...my own view is that in 50 years time there may well be different categories of IBS, ie: those caused by foods, and those by bacteria, and those caused by mind-gut issues, and so on. Maybe it won't even be called IBS even more, we might get a brand new name for each disease!
In the end, the only attitudes to IBS that I am keen to see dead and buried are, first, when an IBS sufferer can't express any emotion without having that emotion labelled as a cause of their IBS (the problem that started this blog post), and second, the idea that IBS is 100% a psychological disorder which should be treated by telling patients to "snap out of it" or "just eat healthily". These two attitudes really need to die!
Hi Sophie,
I have suffered from IBS symptoms my entire life. I remember as far back as grade school but my mother tells me terrible stories of me from birth. Of course the MD's had no idea what it was back then. I think I first heard about IBS in college in 2001 but the MD's were neither helpful nor supportive SO any medical professional out there who thinks that the reception has been warm and fuzzy (not to mention conclusive) is dead wrong. And I totally relate to the anger...the pain and unending nausea...the way it wreaks havoc on your social life.
Any medical professional worth his/her salt knows that they have only begun to scratch the surface. And even though we know so much more about possible organic causes today, we have so much work to do. Wow! things have changed I am happy to say!
I will tell you, and any other readers, that my best luck with medical care has been in a "teaching facility". They tend to be more liberal and have much more personnel and research funds devoted to finding out the nuts and bolts of this condition. Both my medical MD and the gastroenterologist I see today recognize that IBS is a actual medical condition and do not try to cloak it in the stress-pms-emotions jumble. The first time I met the new GastroIn I gave him the riot act...I was very sick and very angry. He amazed me by showing me all this new data they have on IBS and the amount of research that is being directed to finding out how to attack it and how to live with it. Anger is understandable and don't let anyone tell you that you are overreacting. But finding good healthcare...it's possible...
Best wishes to all,
Lisa
Hi, I am 55 and have had severe IBS since I was 27, although I had gut problems as far back as childhood. I have never found anything that works well and god knows I've tried. I did have panic attacks for years but finally learned to control them, but the IBS continued. I don't know what causes it, all I know is it is not pretty and its difficult day after day and year after year. A point I would like to make is that it doesn't matter whether its psychological or physical or both as both should be treated and treated with respect for the suffering endured rather than Drs acting as though its a weakness. I worked in Psychiatric facilites for years and KNOW it is a disease just like any disease, the person does not cause it and it ruins lives. Yet, even to this day psychiatric diseases are treated as though the diseased person is at fault rather than finding the cause, because like IBS, the medical community just does not know and they don't want to admit it. Jen
i have lost so much time from work with my ibs everyone on here is so right i just dont know what to do anymore