I am a 61 year old female. Not working now because my IBS was a problem and I would need to dash to loo. Diagnosed with IBS about 1-2 years old. my problem is I get a onset of diarrhoea so quickly. I get stomach cramps and then panic sets in. To be honest panic sets in when I know I have to go out in the car as I am paranoid about where toilets are in towns or even more when on a motorway. I drive to the nearest supermarket, can’t park outside so run and 2 out if 3 times I make it to the loo but I’ve had embarrassing accidents. My husband doesn’t understand and thinks I should be able to give him more than 1 min notice but I can’t. I’m not as active, walking is about it. I have a stock of Loperamides to take when I know I have to be away home home. To me this is a hidden disability. It’s so depressing
I assume I have IBS D ? : I am a 61 year old... - IBS Network
I assume I have IBS D ?
You should consider applying for a blue badge to enable you to park closer to the toilets
thank you. Do you think I could get one. I never thought about it. It would help immensely.
The application process is straightforward and done online. Confirmation of your issues from your doctor or hospital would be extremely helpful (if not essential).
I think I better make a appointment with my new GP in the new year to discuss so they are aware I’ll be applying. Thank you.
I am 69 and this could have been written by me,although I have never had an accident but more so many near misses.
I am afraid to travel and always take Imodium even for short shopping trips.
I have recently self referred myself for online help through the NHS,and I am hoping that CBT can help.
I have never thought of getting CBT though I don’t know much about it. Isn’t it horrible that every time you want to go out you need to prepare for any issues. I’ve recently moved and feel worse for going out as I’m only getting used to where the supermarkets and shops are. Before I knew every place that had a toilet. If I travel to a friend or family in one direction I know I have services on the motorway. I now have a new doctor which I’ve not met yet so hopefully I’ll get a chance for a consultation. Good luck, let us know how you get on
Hi I really sympathise with you - I had a couple of accidents with spontaneous diarrhoea- no warning and surrounded by people - it made me feel disgusting and dirty. When I did go in a coach trip I was so stressed about not being near a toilet I had a panic attack!! I was very depressed and unable to leave the house. My doctor not exactly empathetic gave me antidepressants and I signed up for private CBT. It has helped enough for me to go shopping - I know where the toilets are! And I take immodium if going out for longer periods - my diet is extremely bland as I’m afraid to eat. I still get panicked before going anywhere. I’ve got a holiday booked abroad and have booked aisle seats incase I need the loo and will buy Tenor pants to give me a bit more confidence. IBS is horrible it has ruined my life. I hope you get a solution to at least enable you to get out
Hi. Thanks for message. You were brave to go on a coach trip. I wouldn’t go unless it had a toilet onboard. I can’t even consider an aircraft now. I panic when on a motorway if cars stop due to an accident etc. I scan the side of the road to work out a place to run too. This isn’t a nice time in my life. I’m so upset with it all. I just keep popping Imodium and hope for the best. Good luck.
I do exactly the same - it’s like PTSD once you’ve had an ‘accident’ the horror never leaves you. The panic attack was awful it was just the fear of not being near a toilet - I didn’t even need to go!!! It’s a vicious circle - the worry makes IBS worse.
it’s such a trauma to plan anything isn’t it. I wish my husband would understand more, I can’t talk about “medical” issues. He doesn’t like discussing those sorts of things. As soon as I go to the ladies in a supermarket he says didn’t you go before we left home. I do a little bit in my own now though a trip to the hairdressers I worry I’m going to have to get up and go during the process. I should be relaxed and enjoying the treatment but I don’t. I get my Loperamide from the doctors now so that helps cost.
luckily my husband is great and very supportive although it does affect his enjoyment of things - we had to cancel a weekend away due to my anxiety over loos. The hairdressers is also a trial for me including the drive to get there. You sound like you have exactly the same thoughts as me 😞
my husband finds it hard to discuss this sort of medical things as he thinks it’s too private. I’m off out tomorrow night and dosing on tabs today to ensure no issues. We’re also away for 2 weeks over Christmas and New Year on a cruise , first get away since Feb 2019 and this has been cancelled from its original date Dec 2020. Take care.
enjoy your night out - and your cruise I’m sure Imodium will save the day - I think just taking it gives you confidence
Have a good Christmas x
We hadn't been away on holiday for 10 years due to my fears,but we did a cruise in September,the journey to Southampton was done with plenty of Imodium.The ship was lovely and clean and plenty of toilets,but if I'm honest we didn't make the most of the ports due to my toilet fears,and didn't book any excursions.
I hope you have a wonderful time.
Please read my comments I hope this can help you too. It depressing it rules your life and stops all enjoyment .x
Have you tried anything to help your IBS symptoms such as Alflorex probiotic, which has been scientifically studied for IBS, failing that the FODMAP elimination & reintroduction diet via a trained dietitian or the Nerva gut directed hypnotherapy app? If you hit on something that works for you, it might help you to get out of the situation that you are in and be able to lead a fuller life.
I could have wrote this my self I'm exactly the same I'm 68 now and it just getting worse. I take Mebeverine before meals and Loperamide when I'm going out. Buscopan is very good for cramps and wind. I am waiting to see a specialist now as I told my Gp that my sister is exactly the same as me and she has had a treatment that has helped her. It is PERCUTANEOUS TIBIAL NERVE STIMULATION. She has also been given a Bowel Wash Catheter to use after every bowel movement at home. She has been loads better with no accidents. The treatment is once per week for 12 weeks then once per week for 6 weeks . It is little needles in your ankles with electrodes it helps the nerves around the bladder leading to the brain. I will try anything to get some relief . Hope this information helps you. Xx
thank you for your response. The cramps I get indicate I need to get to the loo. Once I’ve been , I have to wait, go again and then it’s safe to leave the haven of the loo. The cramps go at the same time, never get pre warning. I hope to meet my new Gp soon. I’ve moved home so never been there yet. Maybe he/she will have time to listen to me. Good luck.
Im so sorry you are going through this, I can relate. It's a really complicated thing the bowel and lots of stuff can contribute to issues. Have you tried looking at diet? Reducing the amount of lactose (animal dairy)? Although it has not completely stopped symptoms for me they have greatly reduced which does help. I have also found that getting worked up about the situation actually makes the symptoms worse so have tried to always have a plan when I go out.
Thanks AnnaBeee. It’s very hit and miss with my flare ups and I think too much about issues before I even leave home. I’m thinking of getting one of those listening/hypnotic tapes on CBT or similar to help me. Take care.
If you're interested in CBT your local NHS should be able to offer you CBT sessions under their IAPT service, here is a link Adult Improving Access to Psychological Therapies programme if you're interested, take care and good luck
So sorry to hear that this is going on in yr life- can i suggest you get hold of Imodium tablets ,always have some on you,in case of the diarrhoea. i hope this helps,also Kaolin from chemists/drug stores etc- eggs might help to bind the food in yr stomach. i know its very difficult. Have had IBS for years now,but its getting better slowly. stay away from sugar as it will be poison to your delicate tummy. take care chris
Hi Chris. I pop Imodium like smarties. Just bought some instance ones in case too. I am more careful about what I eat so I don’t get a flare up. Particularly difficult as I now have Diverticular disease but with no additional issues like an infection so again I need to be careful what I eat. Thank you for responding.
I think I have experienced everything that everyone has said. Have had ibs-d for years but the last year and a half or more has been just awful. I wasn’t a panicky type person but I am now. I’ve followed a Fodmap diet for nearly a year but I haven’t found that it’s been helpful. But I’m too afraid to reintroduce the foods I’ve cut out incase it makes things even worse. Last year my doctor prescribed Amitriptyline 10mg which for the first month was fantastic, I was so happy to be ‘normal’ again as it had been so long. It didn’t work so well the second month and by the third month I was back to how I was before. I then tried Chinese medicine. Acupuncture and herbal tablets, absolutely no difference at all. The only one who gained from the money I’d paid out was the Chinese practitioner. Next my doctor prescribed Mebeverine but they made the cramps worse. I had them all the time so stopped taking them after five days. By this time which was late summer I was feeling pretty low and had a spell where I didn’t go out at all as I felt so bad and was too frightened to stray far from the toilet. I had adjusted my diet, given up alcohol and haven’t had caffeine for at least ten years, I drink peppermint tea. When I spoke to my doctor he refused to give me a stronger dose of Amitriptyline which has been the only thing to have worked albeit briefly. So I asked to speak to another doctor and luckily he was more sympathetic. Now I have been taking Amitriptyline 25mg for about four months. For quite a while it was fantastic, I honestly felt that I’d been given my life back. The effects have faded a bit and I do get cramps most days but am still going to the toilet once a day. I am hoping that it will stay that way as I can’t face going back to how I was. I have ordered some probiotics I read good things about and am hoping that will bolster the Amitriptyline and help it to continue working. Hope my ramblings can help you in some way.
oh my goodness February Girl you do seem to have it much worse. I only suffer from a stomach cramp as a warning that I need to find a loo quick. I’m left with a pain for about 30 mins afterwards but I do seem to get through it without any other medication than Loperamide. I went out last night and it was a successful trip as was in the car 45 mins each way and all I did was take 2 Loperamides at lunchtime and ate plain food and not a lot either. All I do now is reduce meat intake and eat mostly chicken and nothing spicy. I do feel my anxiety is due to how much I think about the journey ahead. I image how it’ll be if I need a loo when on a motorway and think of where we could stop if we had too. As soon as traffic slows down I panic inside. Not sure if I can ever get over this way of thinking.
JayceeJC, anxiety can’t help matters but like you I’m always checking out where the toilets are the minute I get anywhere and I have eyed up the planting at the side of motorways just incase. I did pay and send for a key to a certain type of disabled toilet but there’s not many of those around. I read once that not all disabilities are visible so that’s made me feel better about using them. I too don’t think I will ever have a different mindset now. I’m never fully relaxed when outside the home. It’s a curse that won’t go away.
this sounds exactly the same as my diverticula disease. I was diagnosed with IBS initially but I didn’t accept it so eventually after several years I was correctly diagnosed with DD.
have you got a card so you can use toilets a friend of mine has ibs D she got a card online to say she needs to use a toilet as she has a health issue so needs to use bathroom if you haven’t got a card it might be a good idea to get one because some places refuse people to use their toilets unless your a paying customer
I have had IBS a few years now, but earlier this year I started having explosions, as I call it. No warning what so ever! I didn't want to go out, just like you. I used to wear a pad, but when it explodes it was useless. I am now wearing, what I call 'nappy pants' when I go out. They kind of take the stress away, and take Imodium if I am going out socially, or where I don't know where the nearest toilets are. I do feel for you, maybe these things might help a little.😀
Same here. Uncontrollable diarrhoea, no warning.....until I spoke to my GP and he prescribed Mebeverine (Colofac) for me. I take 1 about 20 mins before I eat, max of 3 a day and my life has been transformed! There are still some foods that sneak through, I have to peel tomatoes, and some things that should be ok are just a no-no. I do check the FODMAP recommendations and I still take Loperamide and codeine if necessary. But no more onions, garlic, lettuce, apples, apricots.....the list goes on. I do hope you find something that works because I know exactly how you feel....take care....😘
I now wear incontinence pants when I go out which gives you a bit more time to get to the toilet without embarrassing yourself. I carry another in my handbag. It also gives you a bit more confidence so you don't worry as much. They are quite comfortable as long as they're not the really thick ones. Good luck
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