OK, so this entry is annoying me before I've even written it, but I think I have to write it anyway. And it's not going to be a rant about some moron IBS product or some idiot IBS doctor, just for a change. It's actually going to be a lovely, positive, fluffy bunnies dancing in the bright clean morning light happy entry. (You can see why it's gonna be annoying.)
The topic is this: I think that we should all keep IBS in perspective. It's not the worst thing in the world that could happen to us. We should all try to remember this fact.
Now, even as I am typing this, several of my brasher brain cells are firing up their little lungs and screaming at me. "Are you completely off your rocker," they are exclaiming, "you seriously want me to have a sense of perspective about something that has had me in agony for years and ruined my social life and messed up my diet and basically been unbelievably pants?"
Well, yes, in fact, I do. Because I think it helps, and because I think that most of us fall into a trap of self-pity sometimes that we can't get out of, and sometimes that's fine for a while, but othertimes it's just plan daft and stops us from enjoying as much of our lives as we can. I personally have something called my "IBS pit of despair" which I leap into whenever I have a particularly bad time with the bowels, and one route out of the IBS pit of despair is through a sense of perspective.
So hear it is.
Firstly, IBS is not fatal. It isn't going to kill me today, it isn't going to kill me tomorrow. I'm already doing better than someone who's just had a heart attack, or a stroke, or got hit by a truck, or got stuck under something heavy when the fire alarm went off and oh no, it wasn't a drill.
IBS is not progressive. I'm not going to have to go through a humiliating and depressing slow loss of all my faculties. I'm not going to watch myself die. I'm not going to gradually fade away like someone with ALS, I'm not going to choke to death like someone with cystic fibrosis. IBS does absolutely no damage to my body - whatever I feed it, however bad the symptoms are, my intestines are still perfectly intact.
IBS does not rob my of my independence. I don't need a wheelchair, or a carer, or someone to wipe my nose. I don't need benefits or money from the government, I don't need anyone else but me.
IBS waxes and wanes. I have terrible times with it, but I also have good times, and I actually have times when I feel perfectly, absolutely well in every way. There are people with chronic pain who would give anything for a few seconds break from their agony, people with tinnitus who would give anything for a few blissful seconds of silence. Whereas I can pretend that I'm healthy for days and sometimes weeks and weeks on end.
IBS is gaining more and more acceptance as a genuine medical disorder, and the sufferers are gaining more respect. Any doctor who still tells you that IBS is not real or is just a bit of stress is about as credible as Milli Vanilli. And we do get treated poorly by our doctors from time to time, but I'd rather have IBS and get told that it's caused by stress than have clinical depression and get told to get off my lazy backside, or have schizophrenia and get treated like a psychopath.
I'm not thankful that I have IBS, but I do take a mental note every time I see a show with someone with another health disorder, and more often than not I wouldn't swap it. IBS is very painful, very depressing, and can be very difficult to deal with, but the fact remains that I'm better off than a lot of other people, and it might do me good to remember that now and then when I'm sat at home eating my gluten-free cake and feeling sorry for myself.
So, what do you think? Do you think we should all keep a sense of perspective, or would you rather have any other health problem than IBS?
(Just to say, in case there are any non-sufferers reading this, it's probably not a bright idea to run off and tell your friend or loved one that there are worse things in life than IBS. A non-sufferer said that to me once and my spleen immediately ate itself.)
Ok can the aliens please give Sophie back and go back to your own planet?
Just kidding!
Actually Sophie I liked this article, it's uplifting and brings out some valid points about comparisons with other worse illnesses, without invalidating the suffering we do have.
Do you think you wrote this now because you've having a better time of it recently, and that perhaps some of the things you're trying might be working to an extent?
Either way, I'm pleased that you've brought in this perspective, and I hope others can take heart from it.
Pinks
It is so good to read your latest Blog - and to know that you are having a 'good time' - Sophie. How right you are that we have 'good and bad' times - I recently spent 6 weeks in New Zealand and the whole time I was in control - I watched what I ate very carefully and apart from a taste of champers at a wedding, drank no alcohol. Mind you, I had the usual couple of Immodium in my pocket - just in case - but the situation did not present itself ! Since being home, i have had a couple of bad days - jet lag is ocver so they were not to do with that. At home, I rush around doing voluntary work - and very often to for folks younger than myself !! I am at last (after 77 years!) learning to say 'NO'!! You mentioned 'tinnitus' - yes!! that is my other bug bear and there is nothing that can be done about it - at least I can control IBS - I long for silence as you say Sophie, but it never happens. Like IBS one learns to live with it - I keep the radio on all day, and go to sleep with it on - at a volume that cancells out the everlasting hiss and whistle that is taking place in my cranium! Could be worse - as Sophie lists so many other far worse and debilitating conditions. keep it up, our scribe - the current blog has done many of us much good.
Yep - I think about this frequently. I don't like it, but heck yeah I'd rather have this (GERD, too) than a fatal disease or something that's going to gradually eat away my brain. Compared to what some people deal with, this is doable.
I think about this too.. a family member of mine has Chrones and yet he lives a full and active life - so if he can why cant I? and he has something far worse than me!!! But telling myself that there are people worse than me makes me feel guilty and humble for a while - but as soon as the pain starts again thats all out the window lol... I think the worst part is knowing that we all suffer from this for no reason at all... Sometimes I wish it was something else, then at least I would know why I suffer and maybe there would be a cure... Oh I am feeling sorry for myself today lol xxx
i think that is a very enlighting article and i can agree with it whole heartedly. my cousin has recently developed alapecia and has to shave off her locks of chestnut hair. at least my condition to a certian degree is invisable.
im just glad that with diet and medication my ibs is slowly and gradually becoming easier for me.
This morning I got up feeling somewhat better after a week of being exceedingly uncomfortable with bloating and constipation,,, to look for some help on the internet, and I found you.
I am a 64 year old woman, in a new relationship with a lovely, sexy man, who no doubt can't understand when I retreat into myself and..into the bathroom. That's the worst, that I can't talk to him about all this.
I lived in London in 1986 and saw a digestive specialist on Harley Street who treated me with contempt, and disbelief when I told him of my long-time constipation problem, which I thought stemmed from food poisoning I had contracted while living in Africa. He treated me with Sennokot, which I discontinued a year or so later. In the last 20 years I've pretty much tried everything that you have described,plus, plus,.. without much effect; well except that yellow sawdust they call fiber is helpful if disgusting,,, I guess.
I still have the problem. Thank you for reassuring me it's not life-threatening, sometimes it feels like it is. This morning I read your whole experience, and I want to thank you for sharing this embarrassing, private hellish condition. I could go on, but, I just want to thank you again for making me feel less alone
I AGREE. it is rough at times, but it could be way worse. thanks for the perspective!
P.S. i LOVED your last podcast about the top 10 things said to IBS sufferers. i was laughing so hard. i've had most of those said to me!
Hi
Just stumbled across this site - I was techincally aware that IBS (n my case D) was quite common, and that, as such, there must have been a lot of literature and online community stuff about it, but I'd never in truth really looked.
I'm 24, and I've had this as a major issue for the last 10 years or so, but, like many others, in retrospect it seems to have always been there. I have felt it's affected my life adversely, very much so. It's ruined several things such as one relationship I valued a great deal and it also led me to be not in a good state to finish my degree the first time I tried the final year.
It has also led to me generally being very inhibited - compared to how I should be. I live in Southampton, and I still go out but only to pubs etc that are within a comfort-zone away from my house (5 minutes or so at most, with a loo roll secreted about my person just in case..). Anywhere else and I have to drive, and even then I have times of total panic as a result.. having to nip off into woods, even industrial estates to find somewhere, countless times.
So it has in essence ruined a lot of social stuff. My partners have usually known about it and been OK, but it's clearly a strain. I won't use public transport, I worry about flying anywhere, and my current gf is keen on travelling (as am I). She's very understanding but it bothers her. I managed to drive to the South of France a couple of years ago, but only with some mates who at least knew enough about it. Even then, it restricted me, and us, as I as the only driver and I wasn't able to go into cities I didn't know and so on.
It has also impacted upon my jobs, it has made me varyingly depressed at times and so on. I have gone through what I assume are the normal feelings about it all - guilt, frustration, anger, self pity - all of which I know are stupid as well, as at the end of the day it's clearly not my fault. But the way it's treated, people tend to assume if I just give things a go, perhaps it will be OK. Well - as you probably know, it's not ok for me to risk things like this.
So anyway - it's nice to know I'm not alone, even though I never thought I was. But it is quite isolating as a rule, because it's one of those "there's nothing much I can do but live with it" things to a degree.
And above all, let me just say - I totally agree with this post. It's bloody awful, IBS, sometimes, and what bothers us is always subjective. So other people have no real right to say "stop moaning" to us, because in our world, it's a huge factor, and the longevity of it cannot be easily ignored as a factor. The continual stress and anxiety about mundane activites etc.
BUT - it's not the end of the world. I know many people who have had much more difficult situations, at least on paper. My current gf had lost both her parents by the age of 15, had various relatives die of AIDS, had her best friend killed in a car crash 6 months after her mother died. I also have a couple of other (less invasive but nonetheless non-curable) medical issues, but even then, anyone suffering with IBS should still take a great deal of positives from that old chestnut - "It could always be worse".
I think I must have been around 16 years old. I’d been out the night before and had a ‘few’ beers with friends and ended up, as usual, at a local club. After we left in the early hours of the morning we had our traditional pie n’ peas from the well dodgy pie n’ pea van.
The next morning, I remember it vividly, I had my first bout of Irritable Bowl Syndrome (IBS). I was on the bog for about 20 minutes. A record. It left me weak and shaky. Strange how clear that memory is. Anyway, later that day I felt somewhat better and swore I’d never get any food from that f***ing van again. Ever…
… alas! Years later (I’m 30 as I write this) I’m still ‘suffering’ from the ‘condition.’ So what triggered my IBS? Was it that dodgy takeaway? The upset stomach I suffered that day might have been the trigger that initiated my IBS. Factors such as a genetic disposition (my mother has Crones Disease ) or teenage stress – A-levels / relationships / career uncertainty etc… all maybe contributing factors. Maybe. Who knows? I have two brothers and both need to wear glasses where as my eye sight is perfect. Luck of the draw eh?
So, in those early days it consumed my life at a stage where it was The Last Thing I Needed – being a young lad n’ all – a gawky teenager with raging hormones. I had numerous visits to the doctor, a camera up my arse (frankly the most hideous experience of my life. The first and last time that will happen). The night before I had this procedure I had to drink a set amount of foul tasting liquid to ‘flush’ my bowls out. Naturally, I thought screw that after managing to keep down less than a pint of the stuff.
During the colonoscopy there appeared on the monitor (which the unfortunately attractive nurse was trying to draw my attention to. However in the misery, shame and down right embarrassment of the moment I wasn’t really paying attention) appeared bits of shit. Whoops! Got a bollocking by the doctor in charge for not drinking all that stuff the night before. Hey, ho. Thankfully, the camera didn’t detect anything Sinister in there.
The message was basically, you’ve got a Condition. Soz. Hard luck. Live With It. Which I have. Went to College, did really well in my A-levels, went to University, did OK (enjoyed myself a bit too much) and now have a good job in the public sector.
And some days are better than others. As I’ve got older and as pressures / stresses / responsibilities inside and outside of work have increased, so too has my IBS. However, it doesn’t debilitate me. My IBS is probably at the lower end of the spectrum in terms of intensity. It manifests itself as Sudden Need To Use Bog Syndrome, plus usual stuff like bloating, fantastic bouts of farting and very occasionally nausea. (Good day = 2 dumps. Bad day = 4 or 5 dumps).
Only occasionally do I have the runs – or Gastric Explosions as I term it. It’s been close on a few occasions where I’ve been ‘touching cloth’ heh-heh… however I’m proud to say that in all this time I’ve never shit myself, sorry – ‘had an accident’. I can’t recall ever suffering from constipation.
I sometimes worry, at 4am, whether my body is absorbing all those essential nutrients and vitamins as a result of a rather speedy metabolism. Ah, what the hell! I’m fit and healthy! So far so good.
I like to think that I control my IBS. I’m stuck with it, which is a drag, but I’m sure as hell not going to let it take over and dominate my life. I’m athletic. I run in half marathons (gearing up for a full marathon!) visit the gym regularly, swim, mountain bike. My IBS doesn’t stop me from doing these things but I do have to factor it in when I’m planning. For example if I go out for a run I try to do so in the morning, but only after two visits to the loo. Otherwise it’s a bit risky. Also, I always carry Imodium in my pocket or wallet.
I ‘don’t do’ long distance car journeys (which sometimes adds an extra dimension of complication to everyday life). Why’s that? It’s to do with Loss of Control. In a car I’m trapped, with no means to access a toilet. That stresses me out. Stress equals Bad Guts. Any other form of transportation – fine! No problem.
Stressful situations, lack of control – and of course junk food, spicy food, green leafy veg and GAHHHH – alcohol – don’t help matters either (red wine = very, very bad). But… my philosophy is f**k it. I’m going to go out, have a lovely hot curry and drink a probably frowned upon amount of booze… and enjoy myself in the process. I’ll no doubt have a stinking hangover combined with Bad Guts the next day.
But so what? Am I going to slink away under the duvet, become house bound and have that “can’t be away from the toilet” phobia? No. Gonna live my life, adapt and overcome. I’ll Prevail over this Condition. And who knows? A year from now there might be a scientific breakthrough and IBS might then be consigned to dusty medical history books.
Chris
Hi to Alise, Rob and Chris, and any other new visitors - thanks so much for your comments, it's great to hear from other people who know just what you're talking about.
Hey Rob, I'm from Southampton too!! Small world.
It's interesting to see that most people agree that we should keep our IBS in perspective, I was a bit worried about pissing people off by saying this. But I guess there's a difference between belittling IBS and saying that we should just ignore it or stop it by some vague process which is not explained to us, and saying that IBS is difficult and painful, but not as bad as some other stuff.
Thanks for the reply. Small world indeed! Perhaps we will meet, with much embarassment, in a bush or other inappropriate place some time..!
Sometimes I can agree with the attitudes posed in this blog. But, you see it's a bit more difficult for me. I have severe IBS, Tinnitus, chronic migraine and back pain. I am always sick and always in pain and I have IBS on top of it all. I think people think I'm a hypochondriac or in need of attention or something. I have given up on doctors because all their prescriptions and recommendations just hurt me more. The meds for IBS irritate it...they don't help. Nothing does. A death sentence sometimes seems like it would be merciful instead of all these horrible conditions that nobody has any answers for. All food bothers me. If it doesn't aggrivate IBS it triggers migraine or irritates the tmj.
I teach a wellness class but I can't practice the eating habits I teach because I have problems with nuts (migraine), veggies, artificial sweetners, citrus (migraine), and all the IBS foods. I also have severe TMJ issues. I've lost 40 lbs. Life just doesn't get any better does it? On top of it all I am a single mother with two children to support.
I'm rarely ever diagnosed with anything treatable and I often wonder what silence sounds like.
Katie, as a wellness instructor, do you have a "desperation" plan for your clients. I've read that homemade vegetable soup, with nothing but water and vegetables (I wouldn't even use tap water) or a broth made with bones where the marrow is drawn out, is a diet of last resort? Then after a week or two building up to other nutritious foods - fish, lamb. It sounds like you've lost alot of weight? Don't give up. I bet there's at least three foods that won't provoke symptoms. Find them, whatever they are - parsley, blueberries, celery, sushi, flax, other seeds, carrots, artichokes? There's a bread called "manna" that's made with sprouted grains and one called Ezekiel that is also from sprouted grains - thus more like sprout bread than grain bread.
Much luck. I know exactly how you feel. Sharon
hi all. i just stumbled upon this site and i must say i was looking for something along this. people i can relate to who suffer from IBS like me. i would like to talk to ye and see how ye deal with IBS everyday. I would like to chat with sufferers so please get in touch if you are interested in helping one another through the difficult times.
p.s. i liked the article sophie there is alot of truth in it and its difficult to put it in perspective sometimes but its important in order to carry on with life.
Brian
Hi, My name is Sophie too...anyway, not only do I find your blog entertaining, but I also find myself feeling a little better when I read it. I know I'm not alone in this! I'm also glad to see that someone else is trying to focus more on the positive than just the negative. I have IBS too, and I'm in my early 20s...it always got in the way of my "life" in college, but, as time goes by, I'm better able to see how much more of a thankful person it's made me! Sometimes I have to stay home in bed because of this nasty illness, but at least I can pick up a book and read, or even write (two of my favorite things to do). I'm never more thankful for things like my vision, or even my ability to walk to the restroom :), when I'm having a bad IBS day. This was a good post!
Worst when you have IBS and GERD together. I used to think it was bad having Colitis alone... Haha now I'm like wow, I miss those days. Stay up, don't let it get to you.