I have been suffering IBS intermittently for years with not much of a problem the past 18 months have been hell .I don't know if its related but about 2 years ago I had a really bad allergic reaction to cashew nuts ..only once before had a bad reaction but didn't know what it was ...it was a 'health bar' ..60% cashews ..the reaction was awful ..the usual rash breathing but the need to go to the toilet ..since then it has spiralled I take all the medication thats available..that sometimes helps but I do think stress sparks it off ..not helped by people saying ' is your stomach better now , maybe its something you ate ' ...its not an upset stomach ...a bit more understanding would help also the horror of going out ...Its awful the thought that I won't make it to the loo terrifies me .
I know Im not alone , I really wish more research would be done into this life crippling condition .
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jalecale
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I agree jalecale, I wish somebody could help us. It has ruined my life. I try not to let it get me down but it rules my life everyday, well what is left of it!
I can only dream of that .I do get annoyed at the lack of understanding but I think its one of those things that unless you suffer from it you don't understand .
Hope you find some help if you do let us all know , because I think like everyone you just feel like there is no hope
Probiotics, exercise and avoiding lactose really has made a difference....
You are right, people who don't have ibs just don't understand how bad it can be, if I get a flare up it can last for days and it's agony, but people don't get it at all.
Maureen I know I do wonder if I will ever get my life back ..even just slightly .My heart goes out to anyone suffering from this not only is it painfully but extremely embarrassing ...its the thing even though we all do it no one talks about ....the fear of having an accident is a real worry .
It has ruined my life too, when I say that to people they just do not understand and think I am being a drama queen but I really am not, it has taken away my quality of life.
Yes, same here, I have had IBS 35 years, daily for the past 29 years, it just gets worse and worse! I think we should have a Dignitas in the UK, and anyone should be able to go and end their life there if the medical profession can't help them! It may sound a bit extreme but it would give me peace of mind that if it all gets too much for me I could opt out!
Yes, and if you say to some people that your life is not worth living, they answer with something like ' oh don't say that' or ' you don't mean that' . They haven't got a clue.
I meant to ask you how do you manage to sleep at night through the pain, do you take anything? x
Funnily enough I sometimes find that it calms down after about 10pm and starts up again about 4am. I have never needed much sleep, went for years on 5 hours a night. Also as we are retired, we can sleep during the day if needed. My husband is a night person but I am an early bird, so he often doesn't go to sleep till about 2am where I am up by 6.15 to start my toilet run. But, if I am tired, I will usually just fall asleep on the sofa. I'm of the opinion that it doesn't matter when or where you sleep as long as you get what you need! Sorry, that probably doesn't help you! Have you tried sleeping pills?!
Yes my doctor has prescribed some but I'm worried about getting addicted. They're the only things that give me any respite I have constant pain. We're also retired so don't have to worry about work etc but I would like some kind of life but pain prevents it. I sometimes try and doze during the day but life seems to just be passing by, same each day. Totally fed up ! x
I know what you mean, I can't figure out what day of the week it is anymore, unless of course I am going completely doolally! Do you drink alcohol, what about a "little" tipple before bed, just a small one, it might relax you maybe!
I agree Maureen. I am always asking my husband what the implications would be in getting to Switzerland. Life is not worth living with this constant pain and all that goes with it.
They are thinking, I believe, of opening one in Southern Ireland, that would be easier to get to, I have heard talk that those in Northern Ireland would be able to cross the border to it quite easily. So that might be an option in the future and a lot easier than getting to Switzerland.
Like you, I have suffered for many years....anyone I mentioned IBS to over the years has dismissed it as nothing more than a bit of stomach flu!! People seriously have no idea how bad the 'flares' are and moreover, how it can make that individual feel. For some people, it will all get far too much and so it is food for thought as to whether someone will feel it easier to not be around than be so in constant pain. There are so many disorders (chronic ones) whereby people constantly suffer.. perhaps if people in the medical profession had these disorders themselves they would be better placed to understand how we all feel!
I don't really have any friends anymore. Still send loads of bloody christmas cards though but they just don't get it, and if they can't believe me when I say how bad it is, I can't be bothered with them either. I have my lovely husband and my understanding son and his fiancee, that's all I need. Oh and my brother at the end of the phone who is a carer for his wife who has dementia.
Friends do seem to come and go but at least you have family who understand and that is what matters most! My family are quite good too, although as I now have IBD (colitis) too diagnosed only in October, I think they are even more sympathetic to my issues.
Hi Maureen (and others who may want to read this....)
I had what I thought was a bit of a flare for IBS in August time; my usual symptoms were D (a few times a day), abdominal pain, wind pain, not always feeling I had emptied my bowels properly and sometimes parts of my colon felt 'sore' as in slightly inflamed... I did not have any blood with my BM but sometimes did have a bit of mucous. I did phone the GP who said I should do a FIT stool test; this came back negative (I now know that a FIT only tests for blood in stools) so the GP refused to write to gastroenterology.
The first week of September I got a UTI and was given antibiotics to treat the water infection. The exact same time my gut problem seemed to get worse - I was feeling unwell and my BM worsened, 6 plus times a day. I was still eating though and did not feel sick at all. Over 3 weeks I noticed that I was losing weight -10 pounds in 3 weeks! Now, normally it would take me 4 months to lose the same amount ( I know this as being at least 2 stone overweight anyway I dieted from Jan to June 2021 and lost exactly 1 stone). So even though my stools were not showing I had blood in them I started to worry.
My GP was not too concerned saying it was the IBS so I took matters in my own hands and paid to see a gastroenterologist. The minute I explained my weight loss ( and all the symptoms) he said I would need a colonoscopy which because it was rapid weight loss could be done on the NHS. I fact, the colonoscopy was done one week after seeing the consultant (mid October). The report written right away said possible colitis...biopsies were taken to confirm diagnosis though.... people can have colitis (UC, or other forms) without bleeding; my images showed ulcers but maybe they just have not bled.
My official NHS 'follow up' appointment is not until the end of April! So, I had no choice but to continue seeing the gastroenterologist privately as I needed to start meds of some sort. According to what I now know about any form of IBD it is trial and error as to which meds work; what works for some will not work for others. I still have some abdominal pain, wind and some days BM fine but not others. I do believe I have both IBS as well as IBD but it is all too easy for medical professionals to use IBS as an umbrella term for so many gut disorders. And, ironically, my bladder issues never righted itself either so I am off to see urology in Feb...
My advice to anyone out there is that you all know your own body. Don't get fobbed off if you really feel you do have an issue.
Just as well you didn't give up. I was thinking perhaps it might be a good idea to write this as a new post, so that everyone can see it! Well done you for persevering!
I will write it as a new post; I do not want people though to automatically assume they are all being misdiagnosed!! By and large that is not the case, but perhaps there a small minority out there who do have similar symptoms that need further investigation...
I've not been stuck but its a real panic at the thought of going out .I have an elderly mother who I should visit more often but its a 2 and 1/2 hour journey there and the same back ..if going by train ...it is a complete nightmare
Even going to the dentist of hairdresser can be a nightmare, but I find that a loperamide tablet (Imodium) or 2 an hour before going out usually gives me enough confidence to do so. I guess that compared with some I am fortunate.
Isn’t that just so annoying like that film Alomg Came Polly, they make it out to be such a comical thing which it is far from. Doesn’t help our cause when they make it to be such a jokey thing!
I've found tremendous relief since learning about FODMAPS - the sugars in foods that cause fermenting in the gut and cause pain (e.g. lactose). Good NHS doctors who are trained in this (NHS Dietitians are, if you can get a referral to one at your local hospital, or there are FODMAP-trained private dietitians) should be able to help you. Meanwhile, read this and explore the relief that can be achieved through elimination of trigger foods that contain FODMAPS (e.g. lactose): monashfodmap.com
Yes I definitely find a Low Fodmap diet helps although it makes it very difficult to eat out. I also take Alflorex probiotic and Mebeverine which are both available without prescription in UK. I find these reduce but don't prevent flare ups
I was prescribed Alflorex by my GP as he said this is far more effective than other probiotics available on the NHS, 'But you will have to buy it on the internet from Precision Biotics UK as it is not funded by the NHS . However it is well worth it............' I have signed up for a repeat monthly order which discounted. I have been taking this for many months and it definately helps. I also take Senocalm on my GP's recommendation that it is most effective of the various options out there. Again, it works well for me.
I absolutely feel your pain. I have have suffered for 24 years and some years were ok, some not so much, although it was always manageable but the last 5/6 years have been consistently bad with only 2 or 3 ‘good’ days per month, it has absolutely drained the life out of me. I no longer have fun and feel like I am one of those people who continually drone on about their condition but the truth is that it is all consuming when your digestive system plays up all the time, you just never know where you are with it. My tummy and I are no longer friends 🙁
Mine is definately stress related. Although if I forget a dose of my anti-spasmodics I know about it. The only people I find who truely understand are fellow sufferers and my GP who I tend to contact if it flares up.
My guess is GPs see it all the time. You're lucky you've got a good one. Lots of them out there who think IBS = functional illness = it's all in your head. Grrr
I would say so. Even food poisoning can cause terrible IBS-D. I’ve suffered from it for years but it got really bad when I caught Pylori H - I’ve tried everything. I do take allergy tablets specifically for food (and the rest) and also Buscopen , which helps eases my pain. Unfortunately not so much for the bloating. It’s the pain I couldn’t tolerate - awful. I also take probiotics in powder form. Not too bad I must say but still need to be careful of what I eat. I can eat more vegetables than I used too. I don’t eat any dairy and frequently cut out gluten products.
Maybe give these suggestions a go? Nothing from my GP helped. I’m also taking Citopram - does nothing for my depression either, still get mood swings.
I'm so sorry that you're suffering, I feel sorry for anyone with this awful condition which nobody understands unless they have it. The symptoms are so varied - over Xmas I felt quite good but now have nausea morning and evening and griping pains. Do hope you soon feel better, we can all sympathise.
I understand I have the same problem , especially when We were in complete lockdown ! No public toilets to be found !! Had many a time where had to hold it in so to speak , it’s easier now but when out for a walk it’s scary ! I try not to walk too far !!
It should be called forever in pain not irritable as it’s constant . I don’t suffer from diarea mine is constipation .and constant pain. Yes it ruins lives mine included . Since lockdown it’s got worse as as my husband got Covid and although he’s tired we are in lockdown again . But travelling is a nightmare and but i tr6 a visit my grandchildren 5 hours away in the car . But it’s hard going. But what hurts is people saying it’s only ibs only . Then we had to cancel a visit as husband was positive I actually thought at least it’s not me this time .😩but when I heard my daughter saying makes @ change it’s dad as your always not well . Made me cry inside but had to hide the hurt . I would give anything for a few normal days . Where your stomach and bum are normal . Just go to the toilet and not think about . 😍if only . Rant over but I feel for everyone who has this illness .💕
My heart goes out to you as if it wasn't bad enough the lack of understanding on people especially family really hurts .As if anyone would make this horrible condition up . I know all that suffer would give anything to be normal. I too have had remarks , they seem to think its a bit of an upset stomach and you will be over it in a couple of days no matter how hard I try to explain. On the bad days having no control over your bowels is no laughing matter.I have lost my temper sometimes when being told 'I can do this or family want to meet up ' I just had to be completely vulgar( please excuse me ) and say I can't be far from a loo because I might s**t myself ...it then goes silent
This is definitely a life crippling condition. I am a 48 year sufferer of this insidious disease. I know IBS is not classified as a disease but it should be and then maybe people would be more understanding. Over the years I have lost friends over not being able to attend certain functions, I cannot plan anything and basically live minute by minute to see what kind of day I am able to have. Usually it is just full on in the loo. My anxiety is to the moon and getting a good nights sleep is far and in between. Isolation from Covid is just another add on to my daily limitations.
I work hard on relaxation techniques, gratitude and injecting humour into my situation but, the older I get the worse this ever changing IBS monster becomes. It is an emotionally and physically debilitating disease that ruins people's lives. My IBS body holds me hostage and after years of being told that "It is just IBS", even by medical professionals, is a real gut punch to my well being. I salute all you for being so brave in the on going battle with your IBS in all of it's debilitating forms.
Thank Gawd for sites such as HealthUnlocked that lets you know you are not alone and how wonderful it is to be able to share and give support to those of us that have little hope that there will be a cure for IBS in our life time. Love and pawsitive thoughts to you all.
I’ve been dealing with this condition for years, and honestly, it’s ruined my life. Fortunately for me, I’m retired now, and don’t leave the house unless I have to, which is only for either grocery shopping or Dr appointments. My work around is to wear paper pants, (depends) with a paper towel lining inside. These pants are really meant for bladder incontinence, but they have saved me on many occasions. In addition to wearing that, I also carry what I call my “stay alive” kit, which comprises 2 additional paper pants, paper towels, toilet paper, garbage bags, and a pair of black sweatpants. That way, if I do have a blow out, and have to clean up, I’m guaranteed to have what I need to do that. Also, I don’t eat anything on a day when I have to go out, only take a couple of Imodium caplets in the morning. It rarely happens anymore, but I always follow this procedure, because it makes me feel more secure. This condition is embarrassing and humiliating, and I hate that I’m cursed with it. I don’t know if this is at all helpful to you, but thought I’d share anyways. All the best to you!
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