Life With IBS – 10 Observations
As best I recall, my Irritable Bowel Syndrome started in about October/November 2015. Its advent wasn’t a binary on-off thing; rather it ramped itself up over a few weeks. At first it was just ‘every now and then’, which broadened to ‘I’m having a few bad days’, which in turn broadened to ‘why oh why do I feel awful all the time?’.
So, I reckon I’ve had it for about 18 months now, which is probably long enough to share a few observations.
(Also, one note – this post deals specifically with IBS-D. I can’t talk about IBS-C because that’s not the version I have.)
1. “But you don’t look sick.”
This is, unfortunately, a thing.
Interestingly, I’m finding I get this treatment a lot more from family than from other acquaintances. There is also a temptation to reply with something to effect of, “If you just saw what I did in the bathroom 10 minutes ago, you might revise that view.”
More seriously, I am beginning to understand why people with chronic illnesses find “but you don’t look sick” so frustrating. It seems our culture is only willing to accept an illness as “real” if it gives you the shakes and a morbid pallour.
(Insert obligatory social studies thesis about the interaction between Protestant ideology, the rise of capitalism and the culture of “presentee-ism” in the modern corporate workplace here.)
2. IBS makes you remarkably-blase and unsqueamish about some things.
I have been surprised by the extent to which IBS has altered what I consider normal and acceptable conversation.
“Yeah, I just had 10 hours of uncontrolled diarrhea. And I see that Yank idiot is in the news again – just when will that guy shut up?!” To some extent, you have to get like this just to be able to cope. Your body will do gross things, in large volumes, whether you wish it to or not. Continual shuddering in disgust will just make matters worse.
Other people, however, may be disconcerted by your new-found casualness about biological functions.
3. Folk remedies, old wives’ tales, and what That Guy I know From Down The Pub said last Sunday
“I heard about this amazing herbal cure from a friend-of-a-friend at my colleague’s gym club, and I’m going to rhapsodize at you about it for the next 2 hours and 45 minutes, because obviously I know far more about your illness than you do, and you need my wisdom…”
There are some people out there who just seem to need to proselytise. Chronic illnesses both attract them and set them off. These people seem to fixate on weird diets and obscure folk remedies. Bizarrely, the more obscure and less plausible the thing, the more enthused they will be. (While popularity may not equal value, the converse isn’t true either. Sometimes things are obscure for good reason.)
In general, asking these people to shut up is pointless. They won’t. Instead they’ll get angry at you and turn up the volume. The closest thing I’ve yet discovered to a winning strategy is just to be terribly, terribly English about it – “Oh I’m sorry, is that the time? I’ve got to go, I’m running late for my appointment!”, etc etc.
4. The Points 1-to-3 Two-Step
Point 3, above, often seems to pair itself to “But you don’t look sick!”. Once you’ve dealt with #1 on the list, the critic often moves into advice-dispenser mode, and segues effortlessly into #3. This is pretty irritating.
Sometimes you can short-circuit an over-enthusiastic advice-giver using Point 2. (You: “Oh wow, that’s amazing! Would it help me on the days when my stools are loose, watery and ochre-yellow?” Them: “Ugh, uh, eww – uh, gotta go, bye!”)
5. Food-based socialisation becomes a major problem
A lot of human social interaction, it turns out, revolves around food. This is probably a side-effect of being lumbered with an energy-hungry endothermic metabolism that forces us to eat at least three times a day just to stay alive. Unfortunately, when you have IBS, food becomes rather awkward. After all, the colon’s activity-level doubles after meals, and it’s particularly-excitable early in the morning. And there are some foods that will reliably-trigger IBS outbursts – and of course, the triggers include staple-foods of the Western diet like bread and onions.
People, of course, will not show even a moment’s understanding or empathy about this. So, that brunch invitation an acquaintance just sent you? Either risk wrecking your day by offending them with a “No”, or risk wrecking your day with a bowel meltdown. Either way, you lose.
Avoiding IBS triggers is possible when you’re cooking, but difficult when dealing with set menus. Gluten-free is sometimes a thing – not always, but sometimes! But onion-free, garlic-free, low-to-moderate fat, lactose-free, the correct fructose-to-glucose ratio in fruits … yeah, that gets tricky fast. Also gluten-freeness rules out beer, which is a major bummer.
If I’m eating out now, I basically have to assume that I’ll be using anti-spasmodic medications the next day. Talking of which…
6. Loperamide, peppermint tea and mebeverine take over your life
The good news: the above three actually do work, and can put an IBS-D attack back in the bag. The bad news: you find yourself popping pills like a junkie.
Also, they work best ahead of an attack and sadly, it’s unusual for IBS to file for advance notice.
7. The diarrhea isn’t necessarily the worst symptom
For me, the most life-destroying aspect of IBS was actually the brain fog. Here’s a small case in point.
One day, during the summer in 2016, I couldn’t find my kettle. I genuinely had no idea what I’d done with it. As well as a bad IBS day, I couldn’t even have a cup of tea! When the brain fog finally lifted at about 10 PM that night, I found the missing kitchen appliance.
It was in the bathroom. Sat upright, in the middle of the bath. Just neatly there, all by itself, and utterly out of place.
I must have somehow carried it in there, but I have no memory of doing this, and no idea as to why I did this. Also, I’d been back and forward from the bathroom throughout the day. I must have walked past the kettle dozens of times, and somehow not seen it. It’s an amusing anecdote, but the thing is, the brain fog was pretty destructive. It removes both your ability to think straight, and also to cope with surprises. IBS delivers a lot of surprises, and managing it needs a lot of pre-planning.
Brain fog can also cause a lot of problems at work; last year, I went through a difficult employment situation. If I’d been able to think my way out of a biscuit tin most days, I’d probably have coped with it a lot better.
8. For chronic illness, the Internet is a pit of fail
My experience was that Google was not my friend here. If you want to find fad diets, emotional despair, homeopathy and scientifically-dubious alternative therapies, go to Google! If you want to find useful advice, I actually had much better luck talking to other people with chronic illnesses. Score one for old media!
But, there’s one place that you would think could supply useful advice, which sometimes doesn’t. Yup, I’m coming onto the vexed topic of … doctors.
9. Doctors are a mixed bag
I don’t want to say that they’re no help. But, the stomach is complex and it presents a lot of non-specific symptoms. (Headaches, brain fog, persistent tiredness, diarrhoea and bowel pains can be symptoms of all sorts of things.) And stomach behaviour varies from person to person, and also the stomach and the bowels can unilaterally-change their behaviour too. So, in fairness, stomach problems probably are difficult to correctly-identify.
Still, it took me over a year to get a diagnosis. It was an anxious year – I knew something was wrong, but I couldn’t seem to get anyone to believe me. Also, if you have an active imagination, this can get pretty distressing – after all, what if the problem is something really major?
The medical advice on IBS is better than it was, thank goodness, but it’s still not great. But, there is a growing body of research into the physiology and development of all of this. This leads me onto…
10. Lastly, here’s something that actually helps
At the risk of falling into the trap in Point #3, allow me to pass on a small recommendation: the low-FODMAP diet. Unlike a lot of the folk remedies, it’s based on actual science. It’s also effective – going onto that was the key thing that let me get my IBS back in control.
In particular, just getting rid of onions, apples, garlic and gluten from my diet made an enormous difference. (The gluten in particular seems to be linked to the brain fog problem – since I cut gluten out, I haven’t had any episodes of brain fog. The causative mechanism isn’t understood, but I note a lot of people have reported similar experiences. It does seem to be more than anecdotal.)
Irritatingly, refined foods are full of gluten, onion powder and other IBS nasties. The nasties also turn up in places where you really don’t expect them. (As one example, supermarket chilli powder, despite its name, sometimes contains garlic. And I find I don’t need more than a whiff of garlic to set me off.)
Finally, there is one small mercy: grapes aren’t an IBS trigger. So, miraculously, wine is still on the drinks menu. That’s good because believe me, if you’re living with this particular nuisance, the odd glass of wine is going to be needed!