Living with IBS: Hi, just thought I would share... - IBS Network

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Living with IBS

Maureen1958
Maureen1958
•39 Replies

Hi, just thought I would share something that happened yesterday which seems to happen to me a lot when I try to interact with anyone.

My husband and I keep in touch with his mother's best friend from childhood. She is in her mid 80's. My husbands mother died about 3 years ago. We chatted for a while and then she did what she always does, asks if we can go for a visit. She lives about an hour and a half away by car. We always say, it is really difficult for me to get that far and over an hour is pushing it. We try to explain that I never know what I am going to feel like from one minute to another and it's just impossible to make arrangements with anyone. When we go anywhere as a couple, it is always spur of the moment and we never know if we will make it or have to turn back again and go home. I am unable to go to the toilet away from home as I can be stuck in there for hours at a time and just could not do that in a friends or public toilet. If I feel like I need to go when out, it is easier (for me, the way I feel) to hold it till I get home, if that is possible, or just continue with our outing and hope it gets a bit better with time (sometimes I does, sometimes it doesn't).

Also people say they understand and it doesn't matter if you can't make it, until that happens and then they get ratty about it, or want you to make arrangements for another day, when you have put all your effort into trying to do it that day. Or, if you do use their toilet (as has happened to me in the past when I stayed with a friend many years ago), as soon as you get in there they start knocking on the door asking how much longer you will be.

The other problem with this lady is she always wants to feed you, and when I go out I often go all day without eating anything because I am too scared but people will just not leave you alone to let you do what you know is the best thing for you.

Does everyone else experience this too?

Is it no wonder that we do not have any friends

Maureen.

39 Replies
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Linley
Linley

Believe me Maureen I do understand but if you say its easier to go home to your own bathroom(which all of us appreciate) then the IBS has won. I am an active lady in her 60's who has taken back control of her life. I still get attacks but I feel more confident to move on and start afresh the next day. I am no clinician but your anxiety levels appear to be higher than mine. I suggest you tackle your anxiety 1st, CBT may be one way. Contact the IBS Network they are always helpful. When you get the anxiety under control then all your friends on this wonderful site can help you with any other problems. Good Luck!

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Maureen1958
Maureen1958
in reply to Linley

Hi, I don't consider myself an anxiety sufferer. I have IBS that makes me feel anxious when it's really bad.

I don't have flare-ups, it's everyday and has been for 26 years since my ADHD (Attention Deficit Hyperactivity Disorder) son was born, before that it was every other day usually.

When I say I come home again to go to the toilet, it would be because I feel too awful to feel like continuing with our trip out. What would be the point of that. I only come back home as a last resort. Just the fact that I have gone out in the first place means I have won.

I guess it depends on your perspective which way you would look at it.

The post was supposed to be about how other people react to your IBS and how difficult it can be to get them to understand. Not about whether or not I come home to use the toilet and whether or not I have let the IBS win.

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Eliana5
Eliana5
in reply to Maureen1958

I understood and can relate Maureen..it is sad that people think "it's all in our heads" or we have depression and anxiety when we don't. This is supposed to be a support forum..it's too bad when we can't get "support" "understanding" and empathy for our situation and our labeled instead by armchair "psychologists" the pain is **real*** . I had a horrible time yesterday, and this morning feel just awful..no I am not anxious to anybody who wants to label me, I have a real illness with physical causes. Chron's disease. I live this nightmare every day.

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Maureen1958
Maureen1958
in reply to Eliana5

Thank you Eliana for your support. Sorry you had a rough day yesterday, hope tomorrow will be better for you.

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Eliana5
Eliana5
in reply to Linley

Seriously?? C'mon..you don't live in our bodies. It is **not all in our heads** surely you can practice empathy??

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Linley
Linley
in reply to Eliana5

Hi! Eliana

I never mentioned depression and will not comment on it-as I said I am no clinician but from what Maureen said(and I understand her pain) she has very similar IBS problems to what I have had, not Chrons disease as in your case which I know can be debilitating . So my suggestion was based on how I came to improve my IBS life, that's all. Its only a suggestion and no one has to take it on board. It saddens me to think that my post was misunderstood.

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Eliana5
Eliana5
in reply to Linley

It was my bad, and I apologize. I hope we all feel better.

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Maureen1958
Maureen1958
in reply to Linley

Hi Linley, sorry if we got off on the wrong footing yesterday. It's just that people who don't really know me are always telling me I am anxious and I really don't think I am anymore anxious than anyone else.

Anyway that said, I would be interested to hear about your CBT experience. It obviously helped you. Did you get it through the NHS or did you have to go private. If so how much does it cost? I am genuinely interested in what other people have tried.

Many thanks.

Maureen

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Linley
Linley
in reply to Maureen1958

All forgotten about Maureen-I will try and be brief and give you the facts. My GP referred me to a specialist NHS hospital that deals with gut problems for some CBT therapy, he said he has had positive feedback with CBT and IBS. That said my appointment at the hospital resulted in a colonoscopy and no CBT!! Private sessions were too expensive, £40 a session.

A counsellor friend helped me out along with a couple of books-IBS sufferers have "hyper vigilance " where we check our bodies all the time for symptoms CBT tries to get people to change thoughts and break down the vicious circle of negatives. In my case "I can't go to the shops this afternoon because I will need the loo".

I now say" I can go to the shops this afternoon as there are 3 loos in the dept store" One small step eh?

Along with my IBS bible "Take Control of your IBS" by Professor Peter Whorwell. I am better mentally prepared than I was but the physical symptoms still flare up at times. Hope I have not gone on too much.

Wish you all the best in the future!

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Maureen1958
Maureen1958
in reply to Linley

Thanks for replying, it's a shame you didn't get the CBT sessions you thought you were going to get on the NHS. I would rather have CBT sessions than a colonoscopy. £40 a session is pretty steep. I guess you would need quite a few, so would work out quite a lot. Guess that's why I haven't gone down that route myself.

I have wondered about buying Peter Whorwell's book also but I have so many IBS books and none of them have contained any eureka moments.

Wishing you all the best too. No doubt out paths will cross again on this site. Maureen.

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Maureen1958
Maureen1958
in reply to Linley

Hi Linley, me again. I was looking through your profile and noticed you seemed to have had problems with over salivation and mucus in throat. I have similar problems with this myself, keep wanting to spit out what feels like excess saliva in my mouth and having problems with catarrh. I have always had a lot of catarrh but just recently I am noticing a connection with my IBS. Would you have any thoughts on this, and did you get your own problems sorted. Many thanks. Maureen.

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Maureen1958
Maureen1958
in reply to Linley

PS It might be anxiety of course, if that's what you think it is, don't worry about saying so. I promise I won't fly of the handle. (That is a strange expression isn't it, I must look up it's origin).

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Linley
Linley
in reply to Maureen1958

Ha! Ha! yes with me it's probably the "a" word. Think it started about 3 years ago as over swallowing, then later the dreaded phlegm in throat and excess saliva. I took on board the advice fellow sufferers posted. As over swallowing causes gas(and I've got enough of that already) by eating every 3hrs even if it's just a biscuit helped a little. Its very strange Maureen but it eased for a few months then came back again-and this is how its been since for no rhyme or reason. Sorry I cannot help as I know how uncomfortable this problem can be.

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Maureen1958
Maureen1958
in reply to Linley

Hi Linley, okay thanks for that, I guess I'll just continue trying to ignore it as much as I can.

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Squidge44
Squidge44

Hi Maureen I so sympathise with you. I too am going to loo frequently and feel that it is ruling my life. I don’t like going to other toilets either and people just don’t seem to understand. We go to a quiz each Tuesday and when I cannot go because of ibs, everyone says, oh not again, and this just makes me feel worse. Doctor gives me loperamide, and tells me to take it every day, but I refuse, as surely this cannot be right. I take it when the diarrhoea is excessive, but other times I just grin and bear it. How do you cope. I’m wanting to get other people’s comments to see if they can help in any way. I get very morbid and feel that I’m dying, when I know full well that I’m not, it’s just so depressing all of the time.

I trust you are feeling a little better by now

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Kilgh
Kilgh
in reply to Squidge44

You should take the drug every day. It won't hurt you. The off and on dosing is problematic as it prevents your gut from regulating. That is why the drug is prescribed every day. Listen to your doc on this one.

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Maureen1958
Maureen1958
in reply to Squidge44

Hi, thanks for your thoughtful reply. What people don't seem to understand is that you don't feel well enough to go out sometimes. They wouldn't go out if the had a tummy bug would they.

The only way I would say I have coped over the years is by holding it for a while, maybe a few hours before rushing back all the time. That way you have a reasonable amount to get out each time but that wouldn't necessarily work for you or indeed anyone else as we are all so different.

It's funny lots of people say they feel like they are dying. I don't really get that and I don't think I have got cancer either. But I do say to myself when trying to get out of the toilet that I just want to die. And when my son was young I remember laying in bed at night thinking to myself if I'm lucky I might die in the night.

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Eliana5
Eliana5
in reply to Squidge44

Hi, I'm in states, not sure where you are, but I keep seeing posts that "Welchol" and "Cholestal" stops it on it's tracks.

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Blueberry5
Blueberry5
in reply to Eliana5

I live in the States as well and take colestipol. It certainly is a great help. When going out I do take Imodium about an hour before leaving just in case. I also eat small meals to avoid discomfort from acid and gas.

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Eastbourne11
Eastbourne11

Hi Maureen1958 I feel you must be brutally blunt with people and tell them you have a severe form of IBS and find it impossible to travel. She does not have to know that you can go out at times. I find other people have no idea what IBS is or the anxiety it causes. Myself, I have IBS D which has responded well with the low FODMAP diet (one must read the book though). Good luck

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Maureen1958
Maureen1958
in reply to Eastbourne11

Hi, thanks for replying. Yes, I do tell people how bad it is but they just don't listen. But I find people don't really listen to anything you say about anything else either, not just IBS. My problem is that I am too honest and so if someone says don't you go out at all, I tell the truth and say what I can do, given the right circumstances.

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Kilgh
Kilgh

It is definitely one of those disorders you have to experience to fully understand I think. Some people think it's just a minor dodgy tummy and have no idea how much of the Central Nervous System the Vagal Nerve affects. If it was just the once in a while dodgy stomach it wouldn't be a disorder.

I have had several years of minimal symptoms where it takes the first year just to get my confidence back. And then can make social plans like a normal person again. But it always lies in the back of my mind like a form of PTSD.

When I was younger I didn't want anyone to know why I was so anti-social and it did make me feel isolated. Especially in my teens.

I just tell the truth now and educate those around me. I was surprised how many fellow sufferers popped out of the woodwork!

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Maureen1958
Maureen1958
in reply to Kilgh

Hi Kilgh, I definitely think there is a big link with the vegas nerve. I said to my husband years ago that I thought there maybe a link and more recently I have been able to find several articles on the web.

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Kilgh
Kilgh
in reply to Maureen1958

I joked with my Gastro that I'm beginning to have a pathological dislike of my Vagal Nerve.

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Eliana5
Eliana5
in reply to Kilgh

I keep hearing about this Vagus nerve. Does it have anything to do with constipation? I will have to research..unsure..I don't know why Gastros and Doctor's don't mention this..😕

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Kilgh
Kilgh
in reply to Eliana5

Everything. The Vagal Nerve is the communication hub from the brain to the gut. It controls gut motility, blood pressure, heart rate, digestion, emergency response to food poisoning etc, initiates fight of flight response, also linked with Migraine. Basically this is why anxiety and IBS are so closely linked. Also why getting kicked or punched in the liver is so devastating. This compresses the Vagal Nerve and causes blood pressure to plummet causing the body to drop to the ground to keep blood going to the brain. Takes your legs right out from under you. You have no control in it. It's an amazingly complex nerve but it sure can mess you up when it is over stimulated.

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Maureen1958
Maureen1958
in reply to Kilgh

So glad you replied to Eliana about this, because although I understand the concept, I wouldn't have been able to put it into words, certainly not as eloquently as you did.

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Kilgh
Kilgh
in reply to Maureen1958

You are welcome! The MMA fighting reference is not the normal way to explain, but, hey, I have my interests. lol.

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Kilgh
Kilgh
in reply to Eliana5

Also it communicates using Serotonin which is linked with the pain and nausea circuit.

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Hidden
Hidden

Hello Maureen,

I certainly relate to the " I never know what I am going to feel like from one minute to another and it's just impossible to make arrangements with anyone." There were so many family outings I had to cancel last-minute, or send my husband and the children. I felt like i was missing out a lot on fun. So I do sympathise.

We can only do our best. And if other people can't understand that, then that has to be left as their frustration. It does mean they care and would love to see us - even if they have no clue what we have to contend with.

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Maureen1958
Maureen1958
in reply to Hidden

Yes, I totally agree with that (your second paragraph). And that is how I run my life. I wasn't particularly upset by the incident because it happens all the time. I was just wondering if everyone else encountered the same thing. I was guessing they did and thought it would be a good topic for a post from the discussion point of view. I wasn't looking for sympathy advice.

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martart
martart

I totally get it Maureen . When I used to have to work, I would sometimes have to pull out of the driveway , then back in , maybe 3 or 4 times to run in the house to go to bathroom , before I felt comfortable getting on the freeway for the 20 minute drive to work. I am not employed anymore for various different ills. One of them being IBS. But I still have the issues like yours with people just not "getting it". It is definitely not in our heads, and it is such an embarrassing issue to deal with day in and day out , and things happen at such inopportune times. I am very lucky that I am married to a wonderfully understanding husband , and the older I get , the easier it has been to speak up to the other people in my life , also weed out the toxic ones that just are not listening to us , and insist on making it about themselves. You are right when you say , just the fact that you are going out , makes you a "winner " ! Its true , and I like the way you think ! For myself I have learned to be kinder to myself and do what I have to , to live with this syndrome , and if that means not socializing with certain people , I try to do it without the guilt . Keep workin at it , you are doin good !

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Maureen1958
Maureen1958
in reply to martart

Thank you for your lovely reply. I think we are both singing from the same song sheet (as one of my old bosses would have said). It's nice to know there are other people out there that think like me.

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martart
martart
in reply to Maureen1958

sending good wishes for you Maureen , and keep writing here , as I think it helps us cope with this condition and know we are not alone . I check in here most days and it makes a difference ! I play guitar so I thought that was cute when you said, "singing from the same song sheet " ! I am gonna use that one !

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Lulububs
Lulububs

Yes i can totally relate!

I never knew on a daily basis if i was gona b ibs c or d that day and believe me neither are nice with c u get tremendous bowel pain with d u dont know when that urge if gona take u!!!

I have had this since i was 6 and now im 44!!!

It has ruined my friends weddings as i couldnt go, holidays, trips out, family meals.... but everyone understands.

Two years ago i got quite ill and ended up in hosp after a bout of flu and the antibiotics basically poisoned me.... it ruined my stomach.... i lost 2 stone in 6-8 weeks and couldnt keep anything in. The hosp had no idea why.

I paid private to see a gastro and a naturopath who did loads of test and it turned out i was cowsmilk and gluten intolerant and had terrible sibo/ candida from the antibiotics.

I was told no gluten, no milk, no sugar, no processed food and no yeast for 4-6 weeks....

Also take strong probiotics, peppermint cap, digestive enzymes all this time to...

I was dubious this is something id out up with all my life nearly 40 years.

I did it and within 2 weeks i felt so different, i was not bloated, i put on weight, i had no pain in stomach, i kept food in but at same pooped normally... it was abs amazing.

I went back and had re test the sibo/ candida had gone i had put back on half a stone and i was so different. My skin was amazing, hair ,nails, i could go out and not worry about accidents or pain.

2 years down line i still more or less eat this diet and i have had prob 2-3 flare ups and that was coz someone who claimed something was gluten free wasnt....

Idiots👏🏼👏🏼👏🏼.

So i hope u find a way to help urs but dont let it beat u or it ruining ur life....

I have been to partys. Weddings!bbqs everything now i just dont eat anything out aless i know it gluten free

2 likes
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Eliana5
Eliana5
in reply to Lulububs

Please let us know what you take..Probiotics, digestive enzymes that have worked for you..and if I can get them in the States. I don't know if they would work for someone like me with weak pelvic floor..but I am willing to try.

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Anstonlass
Anstonlass

I can relate to your feelings too. I sometimes think I have an obsession with the toilet as I need to know where they are when out in a town or shopping centre. Visiting people can be a pain as if you go to the toilet more than once it is often assumed you have a problem which is contagious!

I have relatively mild ibs but 15months ago finished a course of pelvic radiotherapy (non related) which can aggravate the bowel. I can go for a week feeling quite normal then like today have to rush to the loo often.

Not good when out visiting which is why we tend to stay home, not good either!

Take care.

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Maureen1958
Maureen1958
in reply to Anstonlass

I guess the good thing for me, because I don't go to the loo outside, I don't have to make sure in advance where they are!

You take care too. Thanks for your reply. Maureen.

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Kilgh
Kilgh
in reply to Anstonlass

That's exactly like me! Except my trigger into the normal for days then horrible day cycle seems to have been triggered by a PPI drug. So frustrating as I was doing good for years before this speed bump.

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