October 2006 Archives

I had a lovely email this morning from a lady named Sarah, who wrote to tell me that she had finished reading my IBS story and wanted to let me know that she thought my "self-pity and cynicism" were "pathetic". She has "severe IBS-D" but she doesn't let it bother her, oh no, she just ignores it and gets on with her life like I should - in fact I should get out there and "experience the joy!"

Thanks for that Sarah, it's always good to hear from adoring readers. I've had a few comments like this lately, from the very special Ron who commented on one of my blog entries that I had a superiority complex (and who also believed that I was a pig in the trough of my own self-pity), to the anonymous chap who called me "stupid" because I used the word 'disability' in the same sentence as 'IBS', despite the fact that the American government doesn't classify IBS as a disability.

I live in England so as far as I know I'm not actually required to obey the classifications of the American government, so I let that comment get lost in the spam filter.

And now to Sarah, who I think was actually trying to make a positive comment about how I should not let IBS rule my life, but somehow thought that calling me pathetic was the way to inspire me. I might reply that someone who reads a 60-page story of pain and suffering and then immediately emails the author to insult them is at the very best rather unkind. Plus the young lady wasn't brave enough to leave her last name or email address, so I can't reply to her directly. So I'm replying here.

So, let's see if we can nip the Sophie-bashing in the bud, shall we? I shall now list some reasons why I am not in fact pathetic or self-pitying, and if anyone wants to argue then I expect you to stand up and be counted and at least leave your email address you scared little bunnies. Right, here goes.

1) There is a section of my IBS story which clearly addresses the fact that there may be some self-pity in the story, but that it needs to be there because it is a history of my IBS life, not a history of my whole life. IBS makes me miserable; lots of other things in my life make me happy. I don't write about them on my IBS websites, because my IBS websites are about IBS. With me so far?

2) And if you're telling me to get a life, ask yourself this - am I single? How often do I go out? What are my hobbies? What do I do at the weekends? What are my family like? Do I have a butler? And if you can't answer any of these questions, is it possible that you don't really know that much about me?

3) Do you realise that people get different degrees of IBS? Sarah believes that her IBS is severe, but how do you know my pain isn't 10 times as bad as yours is, my petal?

4) Have you read the study that found an "extraordinarily high rate" (the researchers' words) of suicidal ideation in IBS sufferers? Is that because we're all a bit feeble?

5) Do you have access to the emails that I receive every week, from people who are despairing, and literally crying as they write, telling me how they have lost their jobs and their husbands and they can't imagine how they can get through another day? You reckon these people are pathetic? I have firefighters who write to me and tell me that the pain of IBS is the worst pain that they have ever experienced, and women who say the pain is worse than labour. Are they lying?

6) Can you tell me what you have done to try to help other IBS sufferers? Do you spend hours each week answering emails and telling people about sources of support and trying to give despairing people hope? Do you help out at the IBS Self-help Group? Do you try to get publicity for IBS sufferers so that people are less embarrassed about their symptoms and feel less alone?

7) If you wrote down a whole history of your IBS, what do you think you would write about?

"I had a splendid attack of explosive diarrhea this morning, which I very much enjoyed - the feeling of randomly spasming intestines continues to be wildly erotic. In the afternoon I laughed and laughed as I attempted to pass an extraordinarily large bowel movement without shredding my melon-like hemorrhoids.

The absolute highlight of the day occurred on the way home, when I experienced a frightfully enjoyable episode of fecal incontinence just outside of Slough. You would not have believed the smell - my husband was almost retching it was so pungent. Another magical day!"

If there is anyone else out there who wants to call me names, go ahead. I happen to think I'm pretty strong.

I keep forgetting to mention it, but one of my lovely IBS Tales volunteers is in this month's Cosmopolitan magazine, hurray. It's a fairly brief article because it's part of a larger feature on food and healthy diets in general, but it's still a good article (November issue, UK edition).

Probably the best thing about it is that they have used an almost full-page photo of the IBS sufferer (thanks Andrea!) and she's all dressed up to the nines and smiling, and looks very at home among all the glossy glamorous stuff.

This is very important because IBS does sometimes suffer from an image problem, both because people imagine that IBS sufferers are generally older people or those who have 'let themselves go', but also because IBS symptoms themselves are so unglamorous. But if a glammed-up woman can stand there and say "Yes I have IBS, what's your point?" then that can only be a damn good thing.

After my last entry, on the possible but entirely scientifically unproven effects of vitamin D on my IBS, I've had several people write to me to say that they're gonna try taking vitamin D. Now this is worrying me.

This happened before when I went to see my latest doctor in the Spring, and people wrote and asked about him, and then some people actually went to see him because they had read about him on this blog.

I could, at this point, get like totally drunk on power and tell you all that I am now curing my IBS through the ancient art of sheep-stroking, and then see how many people email me for further details ("What kind of sheep should I use? Do I stroke the sheep or does the sheep stroke me?"), but luckily I'm not that sadistic.

I am, however, slightly worried. It's one thing having people go and see a doctor because I said he was good, but it's another if people are actually taking pills because I kind of maybe thought they might be helping me.

I do worry about this aspect of running health websites, the responsibility aspect, which is why IBS Tales and IBS Treatment have warning notices about how they're not run by doctors and are not offering medical advice. But I completely understand that sufferers often use the internet to get ideas about treatments they could try - I do exactly the same myself.

It's just that my nightmare scenario is someone writing to me and saying "Dear Sophie, you told me to drink arsenic to cure my IBS and now I've dropped down dead. I am rather disconcerted by this turn of events and I shall no longer be reading your blog".

I did actually experience something close to this. Someone had read a story on IBS Tales which included a rather gruesome account of a colonoscopy, and I got an email saying "When I read that story it very nearly stopped me going through with my own colonoscopy". And of course I panicked (IBS people should ALWAYS have all the tests their doctor recommends, it could be life-saving) and removed the story from the site.

I guess what I'm trying to say is that whenever you read about a treatment online, it's always important to do your own research. Check who makes it, check whether it's contraindicated if you're pregnant or have another health condition, check whether there are any clinical trials on it at pubmed.com, and definitely ask your doctor if you're unsure about anything.

And please don't blame me if you snuff it.

I've been feeling pretty darn well for around two weeks now, which is an extremely welcome relief. To be honest things were a bit grim there for a while - my guts seemed to get into their kind of "IBS place" which they don't know how to get out of without help, and I never know how to help. Once I'm in a session like that it can take weeks for things to get back to normal. Well, when I say normal I mean normal for me, which is really quite abnormal for most normal people.

These long-range attacks aren't like my most heinous of all, the diarrhea-out-of-nowhere-with-extra-pain attacks that are just agonising. Their power is in the fact that they go on and on and on, and they start to make you think that this is the way it's gonna be for all time, that this constipation and pain and bloated feeling, this fighting with your system, is just the way you're going to live from now on, so get used to it.

But like I say, finally, I've managed to snap out of it. And I'm not sure about this theory (Oh, I always have a theory), but I think it may be down to the fact that I'm taking vitamin D supplements.

This came about because I'd been trying to analyse my "mystery year", which was a very odd time in about 2002 when I went for almost a full year with really very few IBS problems. I've tried to recreate it as much as possible in the past in terms of diet and fiber supplements, but with not very much success. The only thing I hadn't tried was the vitamin D, which I was taking because I'd had some back pain and I'd read that vitamin D (along with calcium, which I also take) was good for the back.

I hadn't really connected the vitamin D with IBS because, well, I was taking it for my back and not my intestines, but I googled it and found that it might not be completely ridiculous to think that there was some connection. The most interesting find was a study which showed that mice with Crohn's disease (I know, I didn't realise that mice could get Crohn's disease either, poor little fellows) showed less symptoms when they were given the vit D.

There was also quite a lot of stuff about how people can be vit D deficient fairly easily, especially if they stay indoors a lot and don't get in the sun enough. Plus, it may be complete coincidence, but Caltrate Plus is a supplement which is famous in the online IBS community for helping sufferers (although more those with diarrhea, but still.) And what does Caltrate Plus contain? Calcium and vitamin D.

Anyway, at the moment it's just a theory - and like I say, I always have a theory for the times when I'm feeling well. I'm sure at one stage or another I've attributed my good patches to everything from gluten to coffee to homeopathy to hypnotherapy to the fact that I'm not wearing pants.

Hopefully, in the end, one of these theories will prove correct.

There have been a couple of people in the news recently who have been talking about the "depression" that they have suffered from in the past. I've put that word in inverted commas because it seems that they have basically diagnosed themselves as having depression, which always strikes me as a rather dangerous, and even insulting, thing to do.

Self-diagnosis of any condition is dangerous, not least because most of us aren't doctors and might get it completely wrong, but it's also dangerous for another reason - it devalues the illness itself. By this I mean that if every other person just decides that they have depression, even if they might just be suffering from a perfectly average case of the blues, the real depressives are left with less empathy.

Depression is very similar to IBS in this respect. IBS is another condition which people just adopt because of a mild stomach ache or a bit of alcohol-induced diarrhea. Those of us with genuine, long-term, doctor-diagnosed IBS can look on with contempt, but that doesn't stop people from going around saying that their bowels are as irritable as ours.

It's a funny thing, this phenomenon. We wouldn't dream of just deciding that we had asthma or malaria, we'd assume that we needed some professional help. I think the problem partly stems from the fact that, in a way, depression and IBS are extensions of the things that we all suffer from occasionally - being miserable and having a stomach upset. So we think we know what the symptoms are, and so we're happy to diagnose ourselves without any proper help.

I'd really like to see less of this. Patients aren't clinically depressed just because they say so, and they don't have IBS just because they've seen it on the telly and it seems a good fit. Like my old school teacher used to say, you shouldn't say you're starving when you're hungry - and don't try to tell me that you've got my illness when in reality you've not got a clue.

I've found a very good new article which looks at the current diagnosis and treatment of IBS, as well as the latest theories on its causes. Written by the splendidly-named Dr Amy Foxx-Orenstein, who works for the prestigious Mayo Clinic in the US, it's a very good intro to some of the latest research on IBS, and well worth a read.

I've chosen a few bits to briefly comment on...

IBS - a complex, multifaceted condition...

Yep, it's not just a bit of bloating caused by stress, you know. So there.

Patients with IBS typically score lower than population norms or those with other chronic GI and non-GI disorders on measures of quality of life.

This is interesting, and it shows just how badly an IBS sufferer's life can be affected by their condition. In fact, two 'quality of life' studies showed that IBS has a greater impact on an individual's work life, social life and general ability to live normally than arthritis, diabetes or asthma. Tell that to the next person who calls you workshy.

IBS was long considered a 'diagnosis of exclusion', leading to excessive testing of patients...Fortunately, advances in research have led to the development of symptom-based approaches...and the development of consensus guidelines advocating a positive diagnosis of IBS based primarily on the pattern and nature of symptoms, without the need for excessive laboratory testing.

The idea of how many tests are actually necessary seems to vary a great deal. Some sufferers have colonoscopies, endoscopies, blood tests, stool samples and more before they are told they have IBS. Other people, like myself, have very minimal testing, if any. This review certainly backs a 'symptom-based' or 'positive' approach to diagnosing IBS, which means less tests and more observation of symptoms, which is good news for all those people who don't like having cameras stuffed up their bottoms.

This is not to say that all tests can be forgotten about, just that there's no need to test a patient for every other GI problem under the sun before sighing in defeat and labelling them with IBS - the traditional and, if I may so say, rather dumb IBS 'diagnosis of exclusion'.

Historically IBS was...viewed as a purely psychosomatic condition.

Yeah, tell me about it. And leeches were viewed as a cure for practically everything, so at least the little docs are making progress.

Although a patient's psychological state may influence the way in which he or she presents, copes with illness, and responds to treatment, no evidence supports the theory that psychological disturbances are the cause of IBS.

I'll just say that again - no evidence supports the theory that psychological disturbances are the cause of IBS. You see! The docs finally got their enormous brains out of their backsides. Well done.

Actually I should probably stop there, I'm making fun of what is a very good article. The good doc goes on to look at issues such as genetic factors in IBS (no conclusive evidence of a genetic link), post-infectious IBS, the role of serotonin, and the latest medications for IBS. Basically it's a "where we are now" article, and definitely required reading for anyone who still believes that IBS is a simple disorder caused by stress or unhealthy eating.