Needing help.
I suffer with ibs mostly D sometimes C and have recently been put on fybogel. It doesn't seem to have helped and the pain and needing the loo is really impacting on my life to the point I'm scared to leave the house.
Any advice greatfully received thank you !
The only thing to fear is fear itself, because you will end up becoming a prisoner in your own home. First you must decide what your fear is. Is it needing the loo? Is it being in pain? Is it something else? Okay, let's try to break it down. Where do you go when you leave the house? We will assume for the sake of argument that you are going shopping, to a shopping centre. Before you leave, you will go to the toilet. On your journey (assume 30 minutes) you pass McDonalds ( they have toilets, normally very clean), you pass getting shops and a chemist (they,too have toilets, the latter only if you ask and explain you suffer with IBS/IBD), pubs ( yep, they have 'em, you may have to buy a pineapple juice on your way out, a small price given the circumstances), BP petrol stations (most of the others too). Now your at the shopping centre, and your window shopping. All the major stores have toilets for their staff, and if you have a can't wait card (available from Crohn's and Colitis UK) they will ,normally, allow you to use their loos.
You can also take Imodium, before you leave the house ( I believe 30 mins before is recommended) to prevent a catastrophe. Always carry spare underwear in your bag or certainly, in your car. If you're going out in the evening again, the above applies. There is always somewhere. I have been in the position where I had fun out of options, so I saw a light on in a house at about 11 or 1130 in the evening. I knocked on the door, apologised, said where's your toilet? Here's my driving licence, phone the police, I'm desperate to use use your loo. I got there in time, they didn't phone the police, and I sent the biggest bouquet of flowers I could afford, by interflora, the following payday.
Sometimes you have to grab the bull by the horns and just, go for it.
Sorry to hijack the post - everytime I read one of your posts / replies, I smile. You are so positive! Thank you.
Thank you, after 52 years (since diagnosis), I can beat this bast#£$ disease, or at least, stop it from ruining my life. I have always found a novel way to deal with it, in order to remain "in control", after all I was the only person who had two holidays a year when I was a kid, even if one of the hotels I stayed in was a hospital... They still fed me, changed the bed clothes, made the bed, cooked my food, and made me numerous cups of tea every day. The nurses still cheered me up, rather like the reps on holiday used to, and I could stay up late as well, sometimes even until midnight. Nowadays, I wish I could fall asleep by midnight.
I agree - FRreedman is so empathetic and generous - helping everyone find something to hold onto so they can get on top of the fear, which 'holds us prisoners in our own home'. I feel so much better now I know there's a library with a loo very close to my local shops.
Thank you for the reply .
It is the worry of needing the loo and as soon as the pain starts you no you haven't go much time.
Quite a few times now I haven't made it to a loo and I'm so embarrassed.
I also have severe epilepsy which is only made worse by a flare up.
My partner does motorsport and is due to go away soon and at the minute the chance of me going will be 0%.
Thanks for reading.
Sorry to sound like an old record, but have you been referred to a dietitian to be taken through the fodmap diet? When I had IBS-D, that sorted me out.
Thank you for the reply haven't tried the fodmap yet.
When traveling I either need to take loads of Imodium and hope for the best because once the pain starts you need the loo😣.
I also have epilepsy and back problems so on so many medications.
That's a lot to deal with and must be really tough for you. Imodium can be a life saver in the interim. I suppose at least the fodmap diet is just food, so it won't involve taking any more medications and hopefully it will get you off the Imodium. Hope you find something that works for you.
Reduce alcohol, eliminate fizzy soft drinks, avoid peanuts, sweetcorn, Brussel sprouts, baked beans etc. Is a good way to start your getting better diet.
Hi thank you I tend to avoid pretty much all of those especially alcohol as my dose of medication for epilepsy is high.
Hi, just wondering how long you have had this condition?
Hi have suffered for the past 6 years but has been worse the past 2 😣
Have you heard of BAM (Bile Acid Malabsorption), sometimes called BAD (Bile Acid Diarrhoea. It might be worth googling it to see if sounds familiar to you.
Thank you for the reply.
I have just looked it up does sound something like it although I can go some weeks and be fine with no tummy trouble or get diarrhoea or constipation then it's a daily battle to no how your going to be feeling 😣
Okay, I just thought I would mention it, I have read that some people state that a third of people with IBS actually have BAM, so I keep putting it out there, just in case. Keep it in mind though.
Couldn’t agree more with Freedman. I have had this issue for many years now and you have to try and manage it or you do become a prisoner. I use Immodium daily (don’t buy Immodium buy Loperamide tablets. Only 59p in B&M - same thing as in Immodium. It helps to tell friends and family too as it takes the pressure off if people understand your limitations that when you have to go you have to go. Please don’t let it ruin your life. It can be managed.
Thanks for your reply .I try to manage it with the Imodium but the just comes from no where then I need to go. The only trouble with this is when we are travelling away with cars on the lorry (partner does motorsport) it's not so easy to just find a loo. So I find myself having to decide can i do 5 hours up there with 6 hours at the venue with massive ques for the toilets and 5 hours home 😣
Have you tried Colpermin,it's really helps moderate my attacks?
Hi there yes I'm on colpermin and mebeverine thanks for your reply
I definitely second xjrs, I had random diarrhoea attacks for years, I felt hopeless. Turned out I have food intolerances and I was eating them daily! Please ask for a fodmap dietition, it's a life saver 
x
We understand.
Have you tried keeping a wellness diary? Do you also have a Can't wait card and/or RADAR key for when you're out and about? theibsnetwork.org/shop/
Hi I've tried a food diary and can't find any triggers. I don't have a card or a key .
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