Non ibs'ers just dont understand!!

Ive had ibs c (sometimes d) for 10 years. Im a positive happy person, despite the ibs! Ive had all the 'oscopys', scans, x-rays etc. Tried all the diets, everything. I have some very good days, when i have bad ones, i just stay indoors, i dont want to have to explain to people as they dont understand. Ive often been told its just a 'toilet thing'. I wish!! It affects me mentally and physically as im sure most of you know only too well. I get many good days as well and its great! Im 60 now and had to stop working a couple of years ago due to its severity. Im due to attend my nephews wedding abroad in sept and dread getting an attack. My sisters know i have ibs, but to be honest they really dont understand it, despite telling them what its like. My daughters, while seeing me legging it to the throne, still insist, you are fine, mum. I feel guilty if i cant look after my grandkids, and i get the impression they think im just putting it on. Why oh why can this problem not be more understood? The guilt i feel when im having an attack is almost worse than the ibs. Does anyone out there feel this way? Do you find a lack of understanding among those who are lucky enough not to suffer from it? Im not feeling sorry for myself, im just at a loss as to how to get others to see it for what it is, very disabling! If i dont make this wedding? due to an attack i cant imagine what id say! Ok, rant over. Any input/ideas would be greatly appreciated. Thanks. Nanabud

21 Replies

oldestnewest
  • I tell people it's like having the stomach flu. I have to still fake it a lot because I have a 16 year old at home. Actually it's more like I make light of it.

    People who I sense don't get it are cut from my life. I can't handle the stress that comes with that annoyed look I get when I'm running late. I've taken to always driving separately when we go out. It bothers my husband to no end but in some odd way that fact gives me pleasure because he totally does not get IBS.

    Hope that helps some

  • Thanks Sherry, its a relief to know that im not alone in dropping people who dont 'get it'. I too make light of it, but i understand its difficult with a young daughter at home. My youngest left home 3 years ago and i live alone, divorced pre ibs. Have to say it has a lot of positives on my own, no more saying im well when im really not! I love your comment re your hubby, made me smile coz i know what you mean :-)

  • Argh yes, I've had years of hearing the engine running while I'm stuck on the loo.... I too have cut out those who don't understand and want me to do things I can't. If I had a broken leg would they ask me to run a marathon? It's great that we have this site to share our frustrations. :)

  • Know just how you feel, you're dead right, most people don't 'get' IBS and some don't even make any attempt to do so either. The only people who 'get' it are those of us who have it.

    My GP thinks that my woes may be due to problems with my spine (neurogenic bowel) and is now sending me to see a neurosurgeon who may be able to help. In the meantime I've found that by eliminating wheat and (surprisingly) rice, I got a huge improvement. Of course, as rice flour is used in a lot of wheat-free supermarket products, it means they're not an option for me, so am just about to embark on trying rye flour to see whether it's gluten I have prob with or just wheat as a whole.

    Hope this helps.

  • Hi Rosie. Thanks for reply, i hope all goes well with neurosurgeon. Please keep me posted. Nanabud

  • I totally agree with everything you say,I could have wrote your letter myself,have you tried magnesium citrate tablets for the C ?,they help no end with that problem,I also have diverticular disease and have terrible bouts with pain and vomiting that last for hours,when I don't know which end to put over toilet in these bouts I just want to die,some people say oh i have that but dont get those symptoms making it look like im lying, think you are very brave to consider going abroad,at the moment I have said i'm not going on holiday again(we have only ever been on holiday in this country) because its just a nightmare,my husband does not understand, told him he could go on his own but he just thinks im being funny when I say that!i'm 62 and had this approx 18yrs.

  • Thanks Cassie, i will try the magnesium citrate. Im not brave travelling, believe me, i dont want to lose face and im determined this condition wont beat me. I say that now but i could easily have to cancel at the last minute! You make plans but ibs breaks them.

  • I know,it would be lovely to be able to make plans and be able to stick to them, x

  • OMG! People who understand. Ibs is a nastie problem to have. You have the cramps,sweats, diarrhoea, Vomiting is awful and I to have diverticulos, calling in to work saying that you be in late or not coming in at all. I have had ibs for 27 years and diverticulos for 2. My husbands great and never complains if I'm unwell ,but it stop me from enjoying life. I take a apercap, mabeverin, buscopan and anti sick pills . All work great of I can keep them down and not vomit. !!! All the Dr's say is you have to manage it there's no cure. And yes people say oh its botty trouble. But It's more than that.

  • Nanbud I do so understand you .. I am 6 yrs older and have had IBS since I was 60.. of course you would fear going abroad we used to travel abroad all the time but now we don't if we go away it is Devon or some where in the West country.. I am a very reserved sort of person so do not elaborate on the horrors of IBS to others. to say it is hell on earth is an understatement.. I don't have to tell you do I .. but please forget the guilt YOU are the one suffering this not others they are the lucky ones.. you are going to have to learn to be like me.. be kind to yourself I don't look to others now to be kind to me I do it first .. I deserve it so do you Nanabud. gentle hugs and do what is right for YOU without the guilt.. your life, your pain and you know what you are capable of you don't need others to comply.. good luck xx

  • Pat, thank you SO much for your inspiring reply. You are right in what you said about the guilt, i do need to let it go and be kind to me. I know i will battling for the next two months with the thought of travelling and the possible outcome. I do try to beat this and carry on like normal, but ibs is far from 'normal' and i need to care for me instead of trying to comply with others who truly do not care. I have no doubt others on here will get as much from your reply as i have. Many, many thanks Pat. Hugs back to you too.

  • your welcome Nanabud trust me I spent YEARS worrying about others, and what others wanted, thought, etc.. and drove myself nuts.. then it hit me I am the one suffering these things, not THEM.. the wedding is not even a daughter/son etc so don't worry.. as I said there comes a time in life we have to nurture and care for ourselves and show love and care to ourselves.. now is your time.. will post a photo next just for you :) Love Pat xx

  • Hi Pat, Thank you for the photo, I love it!! Louise's books are brilliant also. I need to re-read them again i think!! I agree re it being my nephews wedding and not any of my daughters, so yes I will nurture and care for for myself, beginning today. Like you said, now is my time. I believe I lost myself worrying about others reactions and trying to please them, so I will take myself off this guilt trip and start to live again as best I can with my ibs in tow!! Many thanks Pat. Love Nanabud xx

  • Hi Nanabud

    I'm writing this as i am suffering ibs today. I can sympathise. I go abroad for holidays but take. Imodium with me as well as Mybentol and Mebeverine and paracetml, zydol pain killers.. im always better on holiday. less tea, sugar, more walking and rest and wine! walking good but you need to feel well before i find.

    Ii take mebeverine before meals and also AMYTRYPLINE. They can help a lot.Today im in /.out the toilet with groin ache n feel urge to go again. rest is what i need but busy with work.

    have you tried amytrplyne? iv been taking PROBIOTIC called CUTURELLE. Its not Cheap but iv been better for it. also vit d as low vit d can cause upset.

    Normally have IBS 11days in every month now around 6-8 and not always painful.

    sleep and a hot water bottle is what in need. have to wait until after work.

    hope you find away ahead.dont give up i know people who had ibs years and then it

    went completely. iv had it for 20 years. stress makes it worse. im on alow fibre diet and take normacol as substitute for veg.fibre

    regards

    G.

    g.

  • Sorry to hear you are having a bad day grahamg! Mine was yesterday, so not nice. I take very little meds etc now as I find most of them only work for a few weeks, instead I have devised my own eating plan, which is all from trial and error over the years and I still can get it wrong at times. Everyone is different in the way they they deal with their ibs, but I always take on board whatever is suggested to me, so thank you for your input, very much appreciated. I do hope you manage to get that sleep and feel better very soon. Regards Nanabud

  • Hi Nanabud. I totally understand how you feel. I am 55 and have suffered since 1986. I've had to work (commuting to London on the trains) until I took early retirement 2 months ago. I gave the excuse of needing to look after my elderly mum, but to be honest, I simply couldn't cope with the IBS and working any longer as I was getting into work later and later.

    As far as the wedding goes, I would need to travel later in the day (IBS being worse in the mornings) , get up on day of wedding much earlier than necessary to allow toilet time, then take some Imodium which hopefully would do the trick for the rest of the day, being careful of course not to eat or drink too much, or the wrong things! Great isn't it? People have no idea. I have lost friends because they want to do things I cannot do and so yes, it can be very isolating. Because you appear well on the outside they think you are fine.

    I hope you can find a way to go to the wedding... if not, then you could say you are ill. You cannot worry about what people think - look after yourself and sending you best wishes and a big hug.

  • Hi Bevvy, hope your 'early retirement' goes well for you, what a shame we have to go to those lenghts, but its a case of jump before you are fired and thats a fact!! Unfortunately I had to tell people my contract ended, how sad that we have to hide our condition due to the reactions and lack of understanding of other people. Isolation seems to be a fall-out of ibs, but id rather be alone than deal with the 'you look perfectly fine to me' attitude. My flight is in the afternoon and so is the wedding, that takes care of the morning bouts, but sometimes it can carry on through the day for me. I will decide closer to the event but this time I will make myself a priority, not others. I have finally gained a bit of backbone thanks to you lovely ,caring people on here. Best wishes and hugs.

  • So - I have suffered from this lovely three letter word for over 20 years, varying degrees of it over that time - currently in a great deal of pain and issues.

    Humans in general quickly get used to things - as in massive earthquake in a county kills millions, weeks later nobody even remembers it.

    IBS symptoms are the same, when you have any chronic issues those around you get used to them unless they get in their way. It is just the sad state of human nature.

    That said I have my usual spiel that I will tell people..

    "Hey how are you doing?"

    Me: As in work etc or my fantastic medical stuff I deal with all the time?

    Then I let them know what they are comfortable knowing, most I have told of my symptoms become quickly uncomfortable.

    To those that do want to hear it - it goes something like this..

    Just think of this everyday for possibly the rest of your life.

    Wake up at a decent hour, but that is not always how it goes as sometimes you cannot get to sleep or sometimes you wake up in complete emergency mode with symptoms. But lets go to back a normalish day. Get up at 530am, get out of bed and you might feel half decent, and then you think you might be able to leave for work on time today, so you get ready and just as you think you are leaving the symptoms hit and its off to the bathroom. Based on the outcome of that journey, I then might be able to leave and go to work or there are two to three more bouts of painful, bloating, gassy, possibly constipated or diarrhea, to the point in some cases it will finally pass and you can move on or its time to medicate up and hope for the best. The best is then trying to get to work while driving 45min and not having to stop 15 times on the way. Or possibly having to take so many meds that by the end of the day the side effects from the meds are so bad you want to just curl up and die.

    Then it is how it can affect your job, self, social life and everything in between, because you rather just not go places as symptoms can happen at any time and there is nothing like running screaming from a date with a beautiful new person you have just met that you rather not hit with (OH I have IBS and at any moment I might disappear for an unknown amount of time - tends to scare people off)

    But then there are the really bad days, the days that death might be a great solution and or you land in the ER for any kind of relief. Days that crawling from bed would be great if you could or spending the might curled up on the bathroom floor next to the toilet which has just now become your best friend but also your nemesis and now you feel you have spent so much time with it that you are actually married and feel you are not getting enough out of the relationship. Days where you gut has burning hot pokers being pushed through it and cramping that hurts so bad you cannot stand up.

    But all of this at least for me is part of day to day life, so when someone hears this they usually do not know what to say.

    While I work daily toward a cure or at least some consistency, it is not easy. Even a small food change can hurt me for weeks. Then take even more time to get back to where I might have been at.

    Long ago I thought up (mainly because Dr's sometimes just do not get it) the idea of making a medical device that would connect two people and allow them to share symptoms. This would allow Dr's to truly know what a person is going through to motivate them to find solutions.

    I still want to make this device, it is is only to allow for those that suffer with Chronic gut issues to fast track some real solutions.

    That said gut issues are VERY complex - it is the meeting grounds for everything int he body and gut health has been found to truly be at the core of health. So when something that complex and intertwined with other systems is out of whack, it takes a lot of brainpower to try to resolve it.

    I truly believe that my issues stem from how I treated my gut in my younger years, eating junk, drinking tons of soda. But I also think that many are prone to these types of issues and with proper testing can find some relief.

    I am waiting for that day but do not wait for answers, you need to go find them and keep at it till you do.

  • Hi Nanabud.

    I can relate to your situation, i am a 42 male newly diagnosed with ibs and work in a prison where you can imagine a lot of people work, some know i have ibs and some even understand, but alas those who dont have nicknamed me *sicknote*, those i dont listen or talk to, stress aggrivates my ibs, so in my mind they are not worth bothering about, as they are the ones that make my condition worse.

    Management try and understand, but i know they are just putting on a front.

    My wife understands and even goes out of her way when doing the daily/weekly shop to find foods that wont aggrevate my Ibs,, so in short cherrish the ones you love and understand or in the very least try to, and forget those who dont even try to

  • Stephen, So glad your lovely wife is so supportive, it really makes all the difference. How horrible for you to be insulted by such dreadful name calling in your place of work, i understand what you mean re management, i had the same experience. To be honest we are treated disgracefully and it angers me so much! You are correct to say to cherish those who accept us as we are, the others are just not worth getting ourselves upset and getting even more ill. Keep strong. Regards, Nanabud

You may also like...