I have just come back from a night away that included a theatre trip and spent the entire time away from the hotel scared to death that it was going to happen, particularly at the theatre. Control is getting worse, urgency is getting worse. Even at home sometimes its touch and go whether I reach the toilet in time and that’s just a few yards. I wear adult nappies when away from a toilet but that’s not going to stop it happening and I have no belief that they will contain it anyway.
I have a couple of weekends away and a 2 week cruise booked over the next few months and am now considering cancelling the whole lot because I don’t think I can face the constant worry and the humiliation if it did happen. I have always told myself that I can deal with it, that I willl not alow this to dictate to me, but now I don’t think I can deal with it.
I’m sorry you feeling so frightend about this. Faecal incontinence has not happened to me too often and luckily I’ve been at home. You need to go and see your gp and get a referral to a incontinence nurse, perhaps you can self refer, I’m not sure to be honest.
There is something that can be done to help you though, so please seek help.
i totally get what u r saying. please dont cancel anything.
i too suffer from faecal incontinence-happened yest infact. i had planned to go to edinburgh on train for first time on train. firstly my carer didnt show! as regulars of the board will know i had only done one very short journey(with carer) about 3wks ago.
however, have not been for 2 yrs and was determined to meet my friend for lunch-she was going to help as neccesary-she had already checked out the lift situation at waverley for me
the ramp/train was all good. however whilst waiting to board the train for home i began to feel ‘yukky’ and i recognised the signs! i got onto train and sh*t self. on my own in train loo-did what i could (always have pads etc and polly bag on back of powerchair!)
i try to get my head round it by saying to myself that its not my fault. its beyond my control-literally! now thats easy to say but is bloody hard to do-i know! but most ms things are outwith ur control however how you view and cope with them are completely with ur control (even tho it doesnt seem like it sometimes!)
take care, u r stronger than u think! (mentally even tho the carcass is falling to bits!)
setting it up as a battle or win/lose situation isnt going to help.
i understand all about fighting this as long as u can etc (dont agree with the terminology) but i prefer accepting and dealing with (which i know others dont like that terminology!) we all cope differently cos we are all unique!
i really hope u do find your way through this cruel malarkey and am sure u will. sort the head so it doesnt matter what challenge the body throws at you
This was happening to me until I got Peristeen system which is available on prescription only…it is available through your gp or continence nurse but takes a little while to get used to and terrified me until I actually used it
So worth a look, maybe read up on it on Coloplast website .
Hope you feel able to go ahead with your holidays.
Thank you all for your replies. I managed to get a doctors appointment today to discuss all this. He suggests upping my dose of laxido, drinking a warm drink in the morning ( I don’t drink tea or coffee so never have a hot drink) so I’ll probably just drink warm water and sitting on the loo in the morning and trying to go. He also mentioned Peristeen to try perhaps if the above doesn’t work for me.Though from what you lovely people say Peristeen seems to me the way forward if only for backup when travelling etc.
