I have been diagnosed with ibs for around 10 years now. I’m some ways I try to manage it best that I can. Just wanted to say on how it makes me feel and the things I struggle with to see if I’m not alone.
So my ibs is usually me needing the loo several times a day. I can’t remember the last time I had a firm passing of stools. Everyday I’m petrified to leave the house. I hate using the toilet in public places, and even my 5 minute car journey to work makes me panic beforehand. I avoid anything and everything, won’t go shopping, definitely no long car journeys, any sort of appointment I won’t attend if I can help it. Just basically normal everyday things I can’t do. I can be sat in the car panicking feeling like I need the toilet all the time, scared that I’m going to be incontinent. Socialising outside my own home is a big no, and I just can’t talk to anyone as I’m so embarrassed, and on the rare occasion I’ve mentioned it to anyone other than my doctor I’m told it’s all in my head or I’m being stupid.
Does anyone else suffer in this way? Has anyone managed to help things get better? The medication I take helps but very minimally. It’s like living in a nightmare.
Hope someone understands
Written by
Merlin1993
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Have you ever had an incident where you have lost control of your bowels?The fear of incontinence isn't the same as actually losing control of it. Personally I often have no choice but to use public facilities as I'd rather do that than lose it in my underwear. The fear of crapping yourself soon replaces the fear of public rest rooms. Sadly I still work everyday and go out when I can, usually to places I know have a public bathroom. I too wouldn't leave my house if there wasn't any available. I have at times had to pull onto the the hard shoulder on the motorway as there was no way I could make the next convenience. Thankfully I carry things for just such emergency situations. Spare clothes, loo roll and wipes.
It's now my new normal and sadly when flaring is a necessity. I say don't let IBS define you, you must learn to define the syndrome. Take care and good luck.
I don’t know myself what would be worse. The the fear of it just completely takes over. I can see that life would go on and definitely wouldn’t be the end of the world. But I guess I can’t seem to get past the fear and anxiety.
So good to hear of your experience and that I’m not alone in feeling this way.
Thankyou for your reply.Wow. It’s just amazing to hear that I’m not the only person that this happens too. Sometimes I’ve found myself looking around me wondering if anyone else could be feeling the exact same as me.
I’ve never actually had an occasion where I’ve been incontinent. I have had countless “close calls” where I have been incredibly close and just managed to get to a toilet in time. But I put that down to me sticking close to home, and luckily having a job close to home. But as I say a 5 minute car journey can be awful with the amount of stress and panic that I feel. I think the fear of having to be in a situation where you have to explain to someone that you have soiled yourself is just as hard as having to manage this illness.
It’s definitely something that can take control of your life, but Thankyou for those helpful tips. Have you managed to at least feel free to go about “normal daily things?” Or even how do you manage a situation where you might want to go out and socialise with friends?
Welcome Merlin1993, I think this affects many of the people on this forum. Being prepared for if the 'worst' happens is helpful in easing your mind. So, keep an emergency kit in your car just in case. I do worry about going out sometimes and find it helpful to prepare. Taking a loperamide the day before, and getting up in plenty of time to use the toilet multiple times before I set off. Sometimes, even though I don't think I feel nervous, my guts know otherwise and this can delay setting off. However, once I have left the house, my mind is on something else and my guts usually settle down. Your are by no means alone.
I feel your pain, I get a nervous feeling sometimes when I get visitors to my home and have to use the bathroom. I have climbed walls, into fields to use the outdoor facilities, yeah I have laughed about it, but it's horrible existence at times. I also struggle going to new places, or places does not have facilities, or enough facilities, I have done days in my pat job I worked 5 days not eating till I got home at night, cause the facilities was a 10 min car journey, as I was on a building site. I find my kids are held back, as I cannot do what I want to do, but these need to try harder. In Scotland we have beautiful landscape, things to see, so would like to travel more of my homeland with the kids, sometimes I think the hardest thing is getting use to do something, The more you do it easier it becomes.... IBS is not for the faint hearted. Has an accident once, was over 23 years ago, in fact was the birth of my IBS.
I wish you good health, no point giving yourself a hard time over your condition, it's not your fault, please remember that.
Just wanted to say that your children are not being held back by your IBS, it will make them more understanding adults. My son, now 29, has so much empathy for others after growing up with me trying to balance my IBS with what needed doing. My son has ADHD (Attention Deficit Hyperactivity Disorder) which usually means they don't have very much empathy for others.
Hi Merlin, We all have the same 'panic' worrying about the possibility of having an accident somewhere. Perhaps you need to start small (baby steps) and just try going to your local shops but before you do, make sure you know where the toilets are and maybe take an Imodium a coupe of hours before you go. A lot of people have multiple toilet trips mornings and less so afternoon or evening. If this is you, then use that window (however small it may be) to do something that so far you are getting too anxious about. Yes, do ensure you have a 'kit' of some sort in your car etc.. but if you take baby steps you will be able to have some sort of life and not allow IBS to totally rule you. If it is any help, you could ask for a GP referral for anxiety (or you can self-refer) online. A few sessions with a trained counsellor may help with the anxiety and I promise you that they will have heard everything you tell them all before with other people.
I am always worse in the mornings so always wait until the afternoon to go out. I always have a emergency kit if going in the car, I also take lopermide to go on a longer journey. And I use the Bach Flower non alcohol rescue remedy to calm my anxiety. I think we all worry about needing the loo. And don't forget to praise yourself for every baby step you achieve. Managing IBS is hard but try things when you are at home to see how your IBS reacts to it. All the best x
I was diagnosed with IBS nearly 40 years ago while in college. It does seem to rule your existence at times. I remember finding out that a work friend of my husbands (and mine since we worked at the same company) had issues. We commiserated quite a lot, but the one thing I learned was to really analyze what’s going on when a flare happens. So being very aware of food, stress, etc. He hypothesized about sugar and roughage, since we almost always got distressed when eating at a steak restaurant (salad as first course with a beer or some sweet tea), sometimes not even making it through the entire meal. That actually was the first time that I looked at IBS as a result, and not necessarily a cause. True, it’s not always, but it didn’t hurt to research.
I did try medications a long time ago and they did help. About 7 years ago, after a horrible weekend literally spent on the toilet, I decided to go gluten free cold turkey. That seemed to help quite a bit. Then went dairy free for the most part - I can tolerate butter and some cheese. Also ended up just cleaning up my diet entirely with no HFCS or artificial anything. Now a days, my bouts are typically self induced because I have strayed and drank some lovely chocolate milk or a slice of birthday cake. My family jokes if they catch me dabbling with the trigger foods - “ Mom No! you’re going to be in the bathroom the rest of the day” - except they are much more graphic. Haha. Oh and if I have a Chai Tea Latte from Starbucks, there better be a bathroom close by, even if I subbed for coconut milk!
Don’t want to be preaching if it’s a message you’ve already heard. But I had to come to terms with either being totally ruled by the IBS, or trying to tame it, if not get rid of it. It is so very stressful - the unknowing. But the majority of the time, it’s just your body saying that your gut isn’t right and you need to take notice.
Regardless, you definitely are not alone. We feel your pain and heartache. You will find a very accepting and encouraging group on this forum.
I too am suffering with bouts of incontinence. I am working full time and this can be a worry. I have suffered with IBs since I was 26 years old. I have managed to live a relatively normal life however since I reached menopause my symptoms have got much worse. I am now struggling to get on with my life. I am constantly worrying about losing control and I am scared to eat in case it makes things worse. I am not embarrassed to talk about it but it is affecting my quality of life. I feel a lot my problems are related to stress (the fight or flight response) which up to recently I have been able to control. It is like having a disability but it is not recognised as such. I think there should be more time and money spent on researching the causes and trying to identify genetic links. my mother and one of my sons suffers with the same condition and for my son it has been very difficult, He suffers badly with anxiety due to the stress of having IBS and what that means in his day to day life. He had to give up a job as there was no access to toilets when he needed to go. It is an horrendous problem for so many people. I have not let it define me but it certainly affects me on a daily basis. Employers maybe need to be educated about this condition and to make allowances for people who are capable of working if there is an understanding of their needs so they are not punished or even worse sacked.
You are the only person going through this. Everyone at some point has felt exactly the same. From my own experience my ibs gets worse with stress. Then I stress more when i am having a flare. It feels like going back to square one every time a flare happens.
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