IBS Tales

50 Things You Can Do Today To Manage IBS is a new book which takes a simple look at some of the self-help methods that can be used to reduce IBS symptoms. It’s part of a series of books which take the same approach to conditions such as insomnia and migraines and are written by the same British author, Wendy green.

Let’s take the exact same no-nonsense approach with this review, and just tell you the pros and cons of this book.

Pros: I liked the straightforward approach, and the fact that the book concentrates solely on possible treatments. A lot of IBS books take whole chapters to explain the intricate workings of the duodenum when I just want to know how to get better.

The book covers most of the common IBS treatments, such as diet modification, drugs, fiber supplements and stress reduction. The sections on alternative therapies are useful, with interestingly detailed bits about herbal and food supplements, and I was pleased to see mentions of calcium and magnesium for diarrhea and constipation relief respectively. Brand names etc are the British versions as this is a UK publication but most products mentioned are available in the US too.

There’s a nicely balanced approach to more controversial issues such as candida and homeopathy, describing these treatments while also saying that many doctors remain sceptical about them, and there’s a clear message that IBS is definitely not ‘all in the mind’ which is always a quick way to win me over!

There were also some good, quick tips that could prove useful – for example, trying Imodium melts if you are travelling and don’t have access to water, and contacting the Gut Trust to get hold of a RADAR key which allows access to disabled toilets.

IBS Tales is mentioned in the book too, and I am even namechecked myself (“Sophie has had the the condition for 19 years”) which is rather groovy.

Cons: The book is short at 150 pages, and we’re told very little about the author, Wendy Green – just that she is a health project co-ordinator and that she has some personal experience of IBS. As the author of such a wide range of other health books I presume that she doesn’t have a particular interest in IBS, which of course is not necessarily a downside, but as someone who has studied IBS in detail for 20 years (entirely against her will) I would perhaps prefer to know a little more about the author’s expertise in the IBS arena.

I was also a little surprised by several of the statements in the book that were presented as facts. For example, the author states “Most sufferers experience flare-ups that last between two and four days”, which seems very specific, and I’m not sure I’ve ever read anything that gives that particular timeframe before. Many suffers I hear from experience symptoms for weeks or even months at a time.

The author also says that urgent diarrhea is probably the most distressing aspect of IBS, which I would suggest is a bit of a myth – it’s certainly awful for many sufferers, but for a lot of others the severe pain is their most hated symptom.

Finally, a couple of statements in this book are contradicted by the last IBS book that I reviewed, IBS: Answers at Your Fingertips by the gastroenterologist Dr Udi Shmueli. Wendy Green states, for example, that laxatives can cause dependency, which Dr Shmueli says is highly unlikely and not backed up by modern studies.

He also disagrees with Wendy Green’s assertion that IBS is probably related to a Western lifestyle (stress, refined foods, couch potatoism) and says that IBS “exists in every society that has been examined” and affects 30% of people in Nigeria.

Conclusion: 50 Things You Can Do Today To Manage IBS is a simple, useful guide to the treatment options available for IBS, and a good introduction to the somewhat bewildering array of treatments that we sufferers are faced with.

Buy 50 Things You Can Do Today To Manage IBS from Amazon.co.uk

Alissa has written in with an interesting question – what happens if you are an IBS sufferer already when your gallbladder is removed? Regular readers of this blog will know that gallbladderless people can be prone to diarrhea because of an excess of bile in their intestines, and this bile can often be treated with medications like Welchol and Questran.

But what you have gut troubles before your gallbladder goes? If anyone here has experienced that, Alissa would like to hear from you (just leave a reply in the comments section). She says:

“I’ve noticed that quite a few sufferers experienced the onset of IBS after removal of their gallbladder.  I’ve been dealing with IBS since I was 14, and I was diagnosed at 16.  I guess I’m a ‘C’ type – I deal with (thankfully) very mild constipation, that now with a careful diet erupts into an all-day bathroom session with progressive diarrhea (you must really love this work to deal with all this TMI! )

Anyway, I am now faced with gallbladder surgery.  The surgery bothers me not one wit – it’s a simple procedure and it will be what it will be – but I am very concerned that my now blessedly-easy-to-deal-with IBS will turn into a nightmare situation.  Even knowing I have IBS, my current doctor actually said to me, ‘You’ll try different foods – if something gives you diarrhea, you know not to eat it.’ (!)

Has anyone experienced having gallbladder removal while already having IBS? I know we all are different and have different symptoms and triggers, but I would appreciate hearing other people’s experiences.”

Thought I’d write a brief guide to the different types of IBS, as this can be a confusing subject when you are first diagnosed. It really doesn’t need to be though, so let’s make this as simple as possible.

There are basically three main types of IBS. Firstly, there’s diarrhea-predominant IBS, which, you will be astounded to learn, means that you suffer predominantly from diarrhea. It doesn’t mean though that you won’t have any other symptoms. You may well have pain, discomfort, bloating, or nausea alongside the diarrhea. It does mean though that you will have more diarrhea than constipation. It is often referred to as IBS-D.

Then there is constipation-predominant IBS, which is just the opposite of IBS-D, ie: more constipation than diarrhea. This is called IBS-C.

The third group is sometimes called alternating IBS and sometimes called mixed IBS, and means that you suffer from alternating diarrhea and constipation. This is sometimes referred to as IBS-A.

I occasionally see people refer to IBS-P on messageboards, with the P standing for pain, because they feel that pain is their predominant symptom, but this term isn’t really used beyond the web as far as I’m aware.

There are more IBS-D sufferers than IBS-C or IBS-A sufferers, which is probably why IBS is often more famous for its diarrhea than any of the other symptoms. The ratios are sometimes quoted as about two IBS-D sufferers for every one IBS-C or IBS-A sufferer.

And that’s really all there is to it! IBS classifications are not an exact science, and sometimes people can switch between categories over time, but I expect that most of you reading this will know what category you fit into, either because you’ve been told by a doctor or just because it’s pretty obvious.

There is one IBS sub-category that I should probably mention here – sometimes doctors refer to post-infectious IBS, which means IBS that occurred after an infection such as food poisoning. But that tends to be the only subgroup that gets singled out.

Things do get more confused when doctors (or often patients themselves) start labeling sufferers as having mild, moderate or severe IBS, as these labels are completely subjective, and I’ve never seen any criteria at all to suggest what the differences between mild, moderate and severe IBS might be, so I would take these labels with a pinch of salt. But it doesn’t mean to say they can’t be useful.

So – what kind of IBS do you have? My name is Sophie, and I have IBS-C, and it can be mild, moderate or severe, according to my own personal criteria and the kind of day I’m having!

Researchers at the Boston Medical Center would like your help. They are doing an online study to learn whether writing about IBS symptoms and experiences can actually affect the symptoms themselves – an interesting topic for someone who runs a site called IBS Tales!

They are offering $25 for everyone who completes the full study. All you need to do is write for 30 minutes a day for either one day or four consecutive days, and complete three or four sets of questionnaires over a three-month period.

You need to be a US resident between the ages of 18 and 65 to take part, and you must have been diagnosed with IBS by a physician. Your information will be kept confidential and will only be accessible to the staff in the Office of Clinical Research at Boston University Medical Center.

To participate just go to http://www.bmc.org/ibs

I’ve decided to start a new series of frequently asked questions for 2010, looking at some of the things that newbies to the IBS world need to know. This post, and all subsequent posts, comes with my disclaimer which basically says that anyone who relies on internet information without seeking help from a doctor is a bit of a pillock.

So, our first topic of 2010 is an easy one – does IBS cause blood in the stool? Answer: nope. IBS is a functional disorder, which means that something has gone wrong with the actual function of the intestines, but not their physical structure (or, at least, nothing is wrong with the physical structure that is obvious to the eye or colonoscopies etc).

Some gastrointestinal disorders do cause bleeding, so it’s very important that any bleeding is checked out by a doctor. It’s also possible to have bleeding with hemorrhoids that may be the result of IBS, but you won’t know either way unless you get yourself to a doctor.

There’s no way that IBS alone can result in bleeding though, it’s just not that type of condition. Bloodless, if you like.

Perhaps the greatest pleasure that I get from my IBS websites is reading the lovely messages that fellow sufferers send in from time to time to thank me for the sites or say that something they read about has helped reduced their symptoms.

The other day I received this email from a guy called Bill:

“I hope you had a wonderful tricky treaty Halloween and if you English celebrate Thanksgiving may you and your family have a great feast and know that many of us count you as one of the blessings we are thankful for this season of Thanksgiving.”

Isn’t that lovely? Thank you too, Bill!

Please welcome a lovely guest poster, Bryan, who’s writing about how IBS has affected his working life. More guest posts welcome – just let me know what you’d like to write about by leaving a comment on this entry. Thanks!

GUEST POST: I owe, I owe, it’s off to work I go! by Bryan White

I have always been a person who is interested in technology. As a teenager I bought an Atari 400 computer (circa 1979) and had it apart the next day for modifications. This lead me to a college degree in electronics and a fantastic career in the telecommunications industry. I worked on some amazing projects including the first cell phone technology, fibre optics and internet technology. Much of my time was spent on the road working for various customers and until my mid 30’s I enjoyed excellent health.

I can’t explain what happened or the exact causes such as stress or burnout, but things changed for me. I had a series of health problems over a period of eight years that left me with chronic pain, fybromyalgia and IBS. It became impossible to work on the road any more. The management and union which I had seen protect and help other workers with drug and alcohol problems, physical handicaps and other obvious health problems seemed to not understand what I was going through.

There is nothing more demeaning than to sit in a meeting and explain that your absences were the result of being afraid to drive anywhere because of diarrhea and cramps and the availability of washroom facilities. I could not convince them that an inside job with flexible work hours would allow me to continue my very productive career.

I ended up leaving and joining a small firm as an IT Administrator at a much lower salary (40% of previous salary). I don’t hold anything against my former employer or the national union that let me down but can’t understand why disorders such as IBS and fybromyalgia are so misunderstood.

Things improved for me in the new situation. It is a slower-paced environment with less stress and a management that is understanding of health problems. I can tell you that the struggle still continues day to day to manage my rogue intestinal system and aches and pains. The mornings are the worst. The chronic pain in my back is bad enough but throw in a morning of gut-wrenching cramps and diarrhea and it makes for a very unproductive day. I have managed to keep working and sometimes wonder when my welcome will be worn out.

I thought things were going well until one morning last year when a worse than usual night led to intense pains in my chest and a shortness of breath. There was something very wrong and I ended up in emergency with a heart attack. Honestly, I thought it was all over then and there.

After two weeks and a lot of awful food I was sent home 30 pounds lighter with a whole list of useless recommendations for a healthy life. What they don’t prepare you for is the mental battle of getting your life back together .

After a lengthy recovery I actually feel better than I have in over a decade. I still have bouts of IBS that knock me down for hours or days without any warning, and I am frequently late or need to leave early from work because of my groaning guts. It’s interesting how easy it is to explain a heart attack and get some understanding compared to IBS .

I applaud anyone struggling with IBS and trying to hold down a job. Dealing with unsympathetic workplace policies and the ‘people are replaceable’ attitudes present in this recession are too much to handle.

Seems like my spam software for this blog is getting a bit above its station and has blocked a small number of genuine comments from proper IBSers, so apologies for that.

I’ve fiddled with the spam settings and things should be back on track now, but if you have had a comment blocked please let me know via email (click on ‘How to contact me’ above) or you can leave a comment on this entry – I’ve now set things up so that comments will definitely, positively, get through to me, so feel free to comment away!

Apologies for the lack of blog posts recently – my recent good health and contained intestines are good for me, but bad for this blog…for obvious reasons I can’t write about my own IBS when I feel pretty darn healthy (not including one week of extreme nastiness and an hour at 2.00am the other night when I felt like someone was inflating my duodenum).

So – I’m looking for suggestions from you guys as to what you would like to see me write about on this blog. I’m also wondering if anyone would like to write a guest post – a chance to rant and rave about your own symptoms, or raise a topic related to the IBS community, or basically just waffle for a little while and have a chance to get some replies from fellow sufferers.

I’ve asked my lovely newsletter subscribers for some blog ideas too and I’ve had some excellent ones, including the influence of menstrual cycles on IBS, coping with IBS at work, a piece about fiber supplements and probiotics/antibiotics, and more, all of which are worth some blog time.

So is there anything else you would like to hear about – or you would like to write about? If you have a topic suggestion just let me know in the comments section at the end of this entry, and do the same if you would like to write a guest post on a particular topic. Guest posts should probably be an absolute maximum of about 800 words long, but much shorter is fine too. I do of course reserve the right to edit/reject posts if they’re libellous or bonkers or concentrate on how to cure your IBS by positive thinking.

Looking forward to reading your thoughts!

Hmm…there seem to be some strange goings on at the Gut Trust, the UK charity dedicated to IBS sufferers. The trust, formerly called the IBS Network, has just issued their latest edition of their journal Gut Reaction, and it contains a prominent ‘apology and explanation’.

They say that the Gut Trust is “struggling through a period of upheaval”, list several resignations of staff members, and go on to say that their entire board of trustees has also resigned. What particularly caught my eye was the way they phrased the resignation, saying “the trustees who were in charge at the time of rebranding the IBS Network as the Gut Trust [have] resigned”.

The editorial goes on to say that “rebranding drastically depleted our resources without the expected return in terms of new members and corporate sponsorship, so we had no option but to make difficult decisions to reduce expenditure.”

In other words, changing from the IBS Network to the Gut Trust cost a fortune and didn’t do much good, and now they’re struggling, cutting down on their helpline hours, increasing the price for membership, and even asking members if they wouldn’t mind reading Gut Reaction online rather than in print to reduce costs.

Now, I’m kind of torn on this subject. I was a fan of the old IBS Network for many years – it was an organisation set up by fellow IBS sufferers and a huge amount of work had gone into supporting us intestinally-challenged folk.

But I was definitely against the name change and rebranding – my blog post from October 2007 tells you why (basically I thought that the name of an IBS charity should really have the word ‘IBS’ in the title).

And I am afraid to say I feel even more strongly about one aspect of the Gut Trust’s work, and that is the involvement of Dr Nick Read. Dr Read is a gastroenterologist and analytical psychotherapist, and he has a huge influence over the Gut Trust, or at least he has a huge influence over Gut Reaction, which if you are a member of the Gut Trust really amounts to the same thing.

In this latest issue of Gut Reaction Dr Read has no fewer than two full articles and then two further pages of replies to sufferers’ letters. He is presented as the absolute authority on all things IBS, and his views have appeared in Gut Reaction for as long as I can remember.

So what’s my problem with him? Well, have a look at some of the things he says:

In an article about IBS self-help groups and patients’ attitudes: “I used to talk to the group at Sheffield, but was somewhat dismayed and embarrassed when the discussion seemed to turn to how doctors didn’t recognise or care about IBS. It seemed that all the grievances that the members had in their lives were being projected on their overworked GPs.”

GPs are overworked and don’t have the solution to IBS, but they often treat us like trash. Maybe that’s why we moan?

Another quote from the same article: “If you can present your doctor with specific questions about diet, stress, drugs instead of overwhelming him with ‘the pain is dreadful and I just can’t cope anymore’ you are likely to be able to work in a constructive partnership to manage your IBS.”

That may well be true, but when I couldn’t cope with my IBS symptoms I could hardly get up in the morning, let alone research all of the things about IBS that my doctor should know already.

In a reply to a letter from the mother of an eight year-old boy who has many health problems including diarrhea, pain, epilepsy and hayfever: “Do reflect on the emotional connection. I imagine Joshua as a rather sensitive boy. Things upset him, but he would not find it easy to talk about them and deal with them. Any tension would be expressed through his body through the sympathetic nervous system and could bring on the illnesses he suffers from.”

In reply to an IBS sufferer’s letter: “Otherwise unexplained gut symptoms are so frequently related to anxieties and stresses that wrench the gut out of kilter. Do reflect on whether there is any cause for stress or tension that might be keeping things going.”

In reply to another IBS sufferer: “Symptoms of bowel looseness that persist after an attack of gastroenteritis can be associated with persistent anxiety or depression that was around at the time of the original infection.”

In reply to another IBS sufferer who is moving house and quite ill: “Displacement can be quite a major source of stress…such dislocation is often felt in the body.”

In reply to yet another IBS sufferer (this is my favorite quote of all): “Perhaps if you could cease to worry so much, learn to relax, your guts would not be so sensitive.”

Yes, ladies and gentlemen, it’s the good old ‘just calm down and stop being so dreadfully neurotic’ defence! Honestly. Anyway, you probably see my point.

I wouldn’t really mind all of this if the Gut Trust presented opposing points of view – from nutritionists, for example, or other gastro doctors. But on the odd occasion when this happens, Dr Read is often given room to disagree with the article and reiterate his old psychological beliefs.

His influence is so strong that I remember reading Gut Reaction for the first time, many years ago, and being surprised to ‘learn’ that I actually had a mental health/emotional problem rather than a gut problem. It was only when I started researching things myself for my websites that I realised that Dr Read was firmly in the minority with his views, and about 20 years behind many doctors.

I’m lucky enough to receive review copies of most new IBS books that come out, usually written by leading IBS specialists, and I honestly can’t remember a single one that has presented IBS as some kind of physical representation of emotional trauma. And yet that’s exactly what Dr Read does, year after year,  in the only IBS journal there is. Nobody else’s ideas get a look in. That’s just not on.

So I’m sorry that the Gut Trust are struggling, and I’m especially sorry that the people who have put so much hard work into it are now finding life difficult financially. But if it means that we hear a little less from Dr Read then I can’t say I’m going to be crushed.