Living with IBS and Incontinence for years

[J-68]

Hi , everyone my name is Jackie and living with ibs and Incontinence as well as being disabled and walking with 2 crutches has changed my life. I have unpredictable ibs with D it comes on instantly once I’ve eaten the pain is awful and I often can’t get to the toilet quick enough , and so frequently have soiled myself. This makes going out and socialising very stressful and difficult and I have to avoid food for fear of having D . I’ve lived with this for 16 years following a failed back surgery. I’ve always felt alone with my situation so I’m very pleased to join this community

[Colin_B]

My IBS varies between C and D, what worked for me is an Imodium pill every other night as prescribed by my doctor, I have been taking these for nearly 40 years now and if I stop my symptoms become much worse. Worth checking with your doctor.

[J-68 in reply to Colin_B]

Hi Colin yes tried this and it didn’t help unfortunately but thanks for your reply

[Luisa22]

I am so sorry you are going through this, Jackie. It must be a nightmare for you !

Pants might help? I don't know enough about what are available, but there are, I know, some really strong leak proof ones around. Part of IBS is anxiety, and even that horrible anxiety about soiling ones self could bring on a bad attack!

The trick would be -to be 100% prepared. Carry a little bag with a couple of spare pairs of the special pants, a change of underwear if you feel you might need that too, or any other item of clothing you might wish to change, some scented wipes, a little deodorant spray, a pair of throwaway surgical gloves, and an empty strong plastic bag without holes.

I think there might even be small portable "bidet" options around somewhere...I am sure I have heard of something like that.

So even having that "battle kit" with you can ease anxiety because you don't have to be so scared of not making it to the bathroom. You are then prepared for that.

Use any disabled or baby-changing option in the bathrooms if available. It will give you more space and be easier.

Yes, you might be in there for 20 minutes, so anyone you are with will have to understand "you are a bit slow in the bathroom", so they won't wonder where you have gone!

Choose the safest possible options to eat if you go out, The blandest, plainest food if possible. No matter what other people think.

I imagine you have tried something like Imodium? I know that isn't always a perfect solution.

I am sorry if I make this all sound too easy, when I know it's not easy, especially with your disability, and I admit I haven't thankfully had the same issues as you are going through, so how do I know? but some of the above might be worth thinking about and might help a little bit perhaps.

[J-68 in reply to Luisa22]

Hi Luisa thanks for your advice I already do everything you discussed and have used Imodium without it helping . I really appreciate your advice put very nicely thank you take care

[Trenholm]

Welcome, sorry to hear of your problems. It’s good to know others understand our difficulties. What help have you had from your doctor.

[J-68 in reply to Trenholm]

I’ve had help from a Bowel Consutant who has tried everything but nothing seems to help my unpredictable ibs unfortunately.thanks for your response

[Dollymae06]

I am exactly the same it is so stressful and disabilitating the accidents are soul destroying I take Mebeverine before meals and half a Imodium tablet daily prescribed by GP. I have started taking Alflorex chewable tablets one a day it is helping so much Consultants recommend it for IBS diarrhoea I thought this is the last thing I'm buying as I've wasted a lot of money on probiotics etc: Give it a try it may help you also Buscapan is very good for abdominal pain I buy that too. You are not alone we are here to support each other .x

[J-68 in reply to Dollymae06]

Hi I’ve tried mebeverine and Imodium and buscopan with out it helping but I haven’t tried the Alflorex I’ll give that a try thank you and thank you for understanding

[Choughwatcher]

I understand your feelings and situation completely. Exactly the same for myself, though I've not been eating properly since at school . Cannot have food before I go out, and generally take things day to day at best. GP diagnosed IBS about 30 years ago and nothing given except some relax/mindfulness exercise. I have lots of aching joints atm, no one clear diagnosis, why. Feel there's lots of muscle loss, walking with 2 sticks helps though this causes pain.

Very grateful for repeated back injections 3 months ago, which massively improved my pain though last 2 weeks seems to be starting up again.

Guess we have to stay as strong as possible and I'm very grateful for this community.

Take care

[J-68 in reply to Choughwatcher]

Hi , yes your situation sounds quite similar to mine I was diagnosed with disc degenerative disease in my 30s I now have scoliosis arthritis spinal canal stenosis I could go on with my spinal problems and other medical conditions but the thing which upsets me most is soiling myself and pain and I’m only 54but have felt the age age of a 70 -80 year old since my late 20s .I’m so pleased that you understand it means so much thank you

[Jackie1612]

very sorry to hear what you are going through J – 68.

When things were very bad for me, I found Loperamide (Imodium) helped, but the tablets were too strong for me and my GP prescribed loperamide in liquid form. This can be taken in 2.5 ml or 5 ml variations of that.

It is difficult to get the dose right and liquid might help.

[J-68 in reply to Jackie1612]

Thank you for your response I haven’t tried the liquid before I had the tablets which didn’t help but I’ll try anything again

[Dolly38]

Hello Jackie I read your post and just like to say how sorry I am to hear all of your troubles.

I have had a difficult time with constipation etc etc. I now take laxatives and it's one extreme to another. If I want to go out socially I make sure I don't take laxatives and that I don't eat! I try to go out as much as poss and when I do I wear lots of pads which at least this means it is not too difficult. It helps me a lot.

Take care of yourself

Lally

[J-68 in reply to Dolly38]

Thanks lally I wear big pads anyway because I’m incontinent even diarrhoea can seep through into clothes I’ve found but I may get try doubling the pads but they are already huge like a nappy so it might not work well but thanks for the advice

[Laxmi_kook]

hi Jackie. I am so sorry to hear your experience. I don’t have much advice but just wanted you to know this community is always here for you. Please reach out if you ever feel like talking. No one knows how it feels to walk in someone’s shoes. I am glad you are sharing your story here.

[J-68 in reply to Laxmi_kook]

Thank you so much I’m already feeling the love of this community thanks again