Monthly Archives: October 2007

The IBS Network is the only charity in the UK dedicated solely to IBS sufferers, and it does a great job – I often refer people to its helpline, staffed by specialist IBS nurses, and it produces a range of newsletters, leaflets and other publications about IBS. Self-help groups are co-ordinated through the Network, and the people who work there are lovely and always very helpful.

However, they have recently done something which I consider to be a Very Strange Thing. They have changed their name from the “IBS Network” to “The Gut Trust”.

Now, to me, the “IBS Network” sounds just fine. It tells you that they’re for IBS sufferers, and the network part sounds helpful and connected. It’s straightforward and to the point.

But “The Gut Trust” doesn’t give you the faintest clue what it’s for. I suppose it does sound like an organisation for people with gut problems, but there are hundreds of gut problems, and I want one just for IBS and not for Crohn’s or coeliac or colon cancer or anything else.

Plus, when you say it out loud it sounds like “Gut rust”. Which may well be a nice description of the way my intestines feel sometimes, but it’s not particularly helpful.

This is how the IBS Network have explained the name change:

“The bad news is that very few people know about us. Even if they do hear our name, they don’t know what we do (is the IBS Network a bank? Is it a computer software company?). They don’t like talking about bowel functions.

The first problem is the name. As anyone who tries to sell anything will tell you, a name that ‘does what it says on the tin’ is vital. But it must also be a name that is immediately recognisable to the wider world, which ‘The IBS Network’ is not. So the first decision we have had to make is the most difficult. After months of research, and months of work, we have decided to change our name. The new name is clear, utterly unambiguous, and uses words the rest of the world understands.

Changing the name, though, simply means that it is easier for people to understand who we are and what we do. After ten years, our look and feel had become confused. If we are to get more members, and be seen in the wider world, we must have a consistent look and feel so that we are immediately recognisable.”

I have to say, I couldn’t really disagree with that more. The Gut Trust is not clear, and is certainly not “utterly unambigious” – in fact, it is the exact opposite. It makes it harder for people to understand, not easier, just like it would make it harder for people to understand the purpose of my website if I changed the name to Gut Tales. It’s called IBS Tales ’cause I have IBS. That’s all.

Maybe the IBS Network wasn’t a name recognised by the wider world, but I really don’t understand why the Gut Trust will be more recognisable. Surely the only way to raise awareness of the name is through more publicity; the name itself can’t do that alone.

What does anyone else think – am I being too harsh on the old Network, who I really do have a lot of respect for?

Just a warning that some people over at the IBS Self-help group forums are talking about the fact that they all ordered Zelnorm from an overseas pharmacy and have now been hit with credit card fraud, eg: orders showing up on their card statements that they haven’t made.

I do think we all need to think very carefully before ordering meds from overseas or international pharmacies, especially when we know full well that the drugs we are ordering should not be available without a prescription. Quite apart from the fact that you could end up with pills made of sugar (if you are lucky), you could also find that you are offering your credit card number to some very unscrupulous people. Buyer beware, as ever.

I had to flag this up – a new reader of this blog left a comment (thanks to all commenters by the way, it’s great to get feedback) and told me about a conversation that took place during his last doctor’s visit. I hope he won’t mind me quoting it here, but I wanted to mention it because it’s one of the worst examples of patient care I’ve ever seen in my life:

Doctor: “We’ve tested for Crohn’s, colitis, celiac, etc…and everything looks OK. It would seem you have Irritable Bowel Syndrome.”

Me: “OK…What’s that?”

Doctor: “It’s hard to define. It would be better if you looked it up on the internet.”

Me (slightly stunned by the previous answer): “Is there a treatment?”

Doctor: “Diet management. You have to learn to live with it. Try eating things that don’t bother you.”

Wow. Just…wow. A disorder that’s so hard to define you need to look it up on the internet, but the doctor hasn’t bothered to look it up on the internet himself? What’s that all about – surely the whole point of the doc is that he’s the medical expert who helps explain hard-to-define stuff to plebs like you and me.

And surely (quite rightly) there are lots of doctors who actually hate it when their patients look stuff up on the net, because they fill their heads with all kind of nonsense from all kinds of unreliable sites? I mean, I’ve read stacks of IBS information on the internet, and if I believed half of it I would now think that IBS was caused by fizzy drinks, anger at the family, and unresolved emotional tension, and the treatment was to undergo a three-month colon cleanse and take coffee enemas once a fortnight.

That’s just scary.