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.
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!
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.
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.
Thank you Eliana for your support. Sorry you had a rough day yesterday, hope tomorrow will be better for you.
Seriously?? C'mon..you don't live in our bodies. It is **not all in our heads** surely you can practice empathy??
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.
It was my bad, and I apologize. I hope we all feel better.
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
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!
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.
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.
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).
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.
Hi Linley, okay thanks for that, I guess I'll just continue trying to ignore it as much as I can.