living with ibs site logo
Please donate to our cause

New write up on My latest thoughts on IBS - August 2019


I havn't written about my IBS in a while but that’s not to say it’s not been at the forefront of my mind, any fellow sufferer will know that it’s always there and will never go away I’m sure.
From the decisions we make daily it’s in our faces ... first thoughts when we wake up is usually , what can I actually eat for breakfast ? Then the relentless worrying if today’s the day it will disagree with me and bring me right back down again into that spiral of hopelessness of an attack.
Then throughout our day it creeps up wherever we wander, eating out is our worst nightmare as usual ... not knowing what’s in the food being prepared for us by some random stranger ... can we trust them to potentially throw in something we can’t digest ?
Can we trust them to simply stick to what they cook on a daily basis without taking any notice of the special requirements we have asked the staff to include in our order ?
And if not, can we really trust that , that added onion you see on your plate will just be taken off the plate when u send it back, and brought right back to you ? ... from my experience with the latter... no, we can’t. Time and time again I ask for no onion on my chicken breast burger and have to send it back to the kitchen, then minutes later the same plate of food is in front of me again..minus the onion ... never mind that the food on it is now contaminated with something that could quite possibly cause an attack. And the thought that the server may have just stood there and picked out the onion with her bare contaminated hands while handling the food served back to me. Stressful but often necessary as we need to eat out on the odd occasion .. it’s good for our sanity but terrible for our OCD cautiousness around what we eat.

Then there’s the shopping .. omg we have now turned into THAT person that has to read each and every list of ingredients and nutrients etc etc on everything we pick up , before choosing to pop it in our shopping baskets , even though more often than not we buy the same things week in week out because we know they can be potentially safe from past experience, but just in case ... we read the labels like it’s something we haven’t seen before.
Fodmap is pretty straight forward to understand and simplistic enough in its entirety but yet we are easily displaced by it and constantly questioning that we have remembered correctly what we have read up on religiously due to our inability to not question ourselves and rely on the information we have digested into our brains ... it somehow manages to drift out of our brains when we are faced with it in a supermarket .. and don’t even try and consider going to a market stall to buy fresh fruit and veg ... that’s a whole other minefield for me these days ... running the risk that with no WiFi connection or weak signal that I can’t check online if the delicious looking passion fruit or new variety of cumquat will be somehow allowed to go home with us and safely be consumed without incident.
Then there’s travel ... we have to travel no matter how hard we try not to .. a simple trip anywhere is fraught with decisions and back up plans should the worst happen.
By car we have the most control of the situation until we get stuck in a traffic jam ... then the shit can really hit the proverbial fan. Stuck on a motorway has to be the worst thing ever for fellow sufferers .. the not knowing how long it will take to clear the road ahead and how long we may have to sit there hoping the turtle doesn’t pop his head out at any given moment. And what if he does? .. sometimes it’s not even possible to get out of the car and utilise the trees and bushes ... sometimes there aren’t any trees and bushes at the sides of British motorways at least.
At least a journey by car you can have your choice of foods ... as long as you take your own that is .. service stations don’t really cater for special diets and dietary’s all fast food and preprocessed crap on sale at every turn. If you can cope with a coffee and pastry you’re almost likely to be catered for, as long as you’re prepared to pay dearly for it.

It’s almost the same with train travel except there’s toilets on board that we can utilise at any given point .. as long as the trains aren’t packed solid with punters due to delays along the lines and assuming the toilets aren’t all out of order. I wouldn’t try and use my just can’t wait card though.

Flying ... omg this has to be our worst nightmare as an IBS sufferer .. no amount of contacting customer services will get you a decent meal on board .. one that you can safely say won’t set off some kind of reaction. The special meals selections are pretty screwed up as far as fodmap go .. forget it and take something with you if you need to stay safe on a plane trip foodwise.
As well as the other obvious stress factors with flying, there’s the toilet’s not great and there’s always a queue on most flights.. you cant really hope to jump the line just by asking nicely and again... I don’t think your just can’t wait card will pull any punches onboard, but by every means give it a try.. I once used mine as we were heading for the runway when passengers were told to stay seated.
I just couldn’t wait !

I guess basically as an IBS sufferer we need to be self sufficient most days ... as yet we don’t demand enough attention as we are quite a niche section of society.. possibly hindered by the fact that a hell of a lot of sufferers won’t throw their hands up in the air publicly and show they have IBS ... the stigma is maybe too much for sufferers to admit out loud ? I know recently I tried to do something to push forward IBS awareness and it failed dismally due to the problem of embarrassment rising from the IBS population. ... they will talk about it freely in Facebook closed groups, amongst themselves behind closed doors , but that’s as far as it goes .. no one will put their faces to get the message out there in great numbers.. the odd one or two will gladly stand up and be counted but sadly the rest won’t. Unless the masses come out and join the awareness possibilities IBS will always be one of those unspoken conditions that don’t get enough recognition and research into. The NHS are too stretched to really do much about it and we are sent away and told to live with it.. research the internet to find out more and source everything yourself. If you’re lucky they’ll refer you to see a dietitian and they will help somewhat, but most of it is down to ourselves.
We know there is no one fix solution to our condition, and we also know this condition is different in every one of us that has been diagnosed with it so far. We know there’s no dignity in IBS ... it can drop on us from a great height when least expected and can ruin plans instantly, but we have to get on with it as best we can on a daily basis.
Own your IBS and don’t let it own you ... talk about it ... research it ... and try everything possible to get it under control ... you can live with it if you can control it.
Good luck to every fellow IBS sufferer out there.