IBS ruining me!

[whereishappyat]

I would be grateful for any advice people can offer. I have suffered with IBS for as long as I can remember, but not like this. The past 12months have been embarrassing and I need help. I'm at a point where I can't eat unless I'm at home, next to my own toilet. It doesn't seem to matter what I eat it just causes severe stomach cramps and then an very long toilet visit. I have loperamide from the doc but I try to avoid taking it as when it does work it leaves me so bunged up for days that when I do go to the toilet 3/4 days later it's worse than ever. I can't even go for meals out now, or to a cafe or even fast food place because I need immediate access to a toilet and it's getting me so down. I used to enjoy these things! Doctors have tested my blood for Chrone's disease and it's come back negative so that's that they are happy with it but I'm not!! I can be stuck on the toilet for 45mins a time and sorry for the tmi but majority of the time it's a noisy explosion hence why I don't dare use public toilets. I just want a nice meal with my family. Does anybody else suffer?

Oh happy that must be so tough for you, you poor soul - you have my every sympathy. It's so far away from "normal" & is obviously seriously affecting your quality of life.

Please go back to your GP for referral to a Gastroenterologist, as soon as you can.
There are all sorts of potential causes for IBS & none of them will self-resolve, you need expert intervention.

As well as the QoL aspect there is also the effect that this will be having on your nutritional health; if transit time is rapid & digestion is brief then you won't be getting the essential nutrients that you need & in turn that will make you ill.

Are you properly hydrated?
I'd suggest you take rehydration fluids & soluble multivitamins daily until this is resolved. A quality probiotic would also help, as your microbiome is probably very unbalanced.

Finally, is your life particularly stressful in other ways? The more you can remove / improve your handling of stressors the better for your gut.

Best wishes 💐

Thankyou so much for your reply! To be honest no I don't think I do drink enough fluids, I rarely get through more than a litre a day. I have just put up with it and put up with it now Christmas is coming and I don't want to join in the family meals because I sit there not eating whilst everybody else enjoys their food. I just don't want to waste the GP's time when I know people have much more serious issues than me and they have already ran the blood tests. I will have to make another appointment though I suppose it just makes me feel awful about taking up valuable time x

That’s terrible OP. You poor poor thing. Time to insist on a hospital referral.

Crohns and Colitis cannot be ruled out with a blood test although I have to say your very immediate reaction doesn’t quite tally with IBD in my experience.

You need an endoscopy/colonoscopy (camera investigation) to rule out/diagnose some possible causes of this.

As well as making your life a misery you are likely deficient in key nutrients if your body is not processing food well.

Go to the GP again and do not leave without a referral being made.

Keep a diary for a week prior to your GP appointment. Write down every bowel movement. Look at what you are passing and write down if you see mucus or blood.

I have found that GPs respond well to written records as it carries more weight than (for example) ‘I can’t eat without having to go to the toilet immediately’.

I can completely relate. Very similar to you, IBS has ruled my life for 11 years. Before having my first DD 3 years ago, I decided to pretty much stop eating because if it. When I would eat, I would make sure I was at home with no company for the next few hours and no plans the next day.

I managed to hide it really well, Everyone just assumed I had an eating disorder and I was ok with that.

When I fell pregnant I started eating because I couldn't bare to think I could damage my baby. (I put on 6 stone)

And to be honest my DC were the answer for me. I still have it, but decided I don't care where I go to the loo and since letting go of the worry, it has definitely eased the problem.

I really do feel for you, I hope knowing you aren't alone can help!

I agree with @Webby01 about letting go of the worry of using toilets out and about.

When my colitis was at its worst I was going to the loo 20-30 times a day. A stark choice between staying at home, losing my job, losing my social life and ‘becoming’ my medical condition or developing coping mechanisms so that I could still go out. My colitis was so bad that I was just delighted if I found a toilet; I didn’t give a flying fuck where it was! I knew every public toilet on my route to work and sussed out the least used toilet in my office block.

I always left toilets clean after I used them but if I had to go, I had to go!

As for this:
I just don't want to waste the GP's time when I know people have much more serious issues than me

In the nicest way possible, please get a grip and advocate for yourself. You may well have an undiagnosed serious medical condition. You need proper investigation to rule out anything sinister. Don’t concern yourself about taking up a GP appointment; just do it.

I totally understand how you feel. IBS -D has ruled my life for 20 years to the point where I wouldn't go on days out or my kids school trips. I eventually went to the gp who explored other possibilities first, I previously went to the dr when I was at uni and got told 'sound like IBS go and google' and was really dismissive. This time my dr was great and did loads of test and then properly diagnosed me with IBS and referred me to a dietician. Under the dietician I started the FODMAP diet and things are so so much better. It's complicated and hard work to follow but the results are definitely worth it

You need to make sure it is just IBS and not something like Bile Acid Malabsorption: gutscharity.org.uk/advice-and-information/conditions/bile-acid-malabsorption/

We went to the beach a couple of months back and I dared to delve into the picnic, this resulted in me needing the toilet...urgently! I got to the public toilets where there was a que of about 12 people, I started dripping with sweat partly because the cramps were so severe and partly because I was so worked up with anxiety and embarrassment that I was about to soil myself. It was awful, I started taking off any clothes I could without becoming indecent to try and cool myself down. I know it's not a disability as such but do any of you know whether I would be entitled to a disabled toilet key to make outings less scary if I know I can access a toilet quicker? I have previously on car journeys had to put one of the babies nappies on - much to the amusement of my husband! All in jest though he is quite understanding about it all though really.

Yep. You can send off for a Radar key for disabled toilets. I have one which I carry when my colitis is flaring.

Just Google and you should find their website.

In the absence of there being an accessible toilet I honestly would ask a queue of women whether they would let me queue jump if the alternative is an accident.

I think you can get a disabled toilet key,it's something I looked into a few years ago.

I have tried the FODMAP diet and I did notice a change, so maybe worth a try.

I had all the tests done, blood tests, camera inside, saw a dietician , done food diarys. Nothing unusual showed up.

Definitely go back to the GP and explore all avenues. It absolutely has to be ruled out that there is nothing else going on.

Just remember- Everybody poops- no matter how much they try to hide it

Amazon sell Radar keys - although I have one, for genuine reasons, I've never tried it, mostly cos I don't go out much.

You poor thing. You should definitely go back to the GP. I have it very mildly but I've found it's loads better since I started drinking a Yakult every day.

I don't have any advice really...just solidarity. I could have written your post. I'm sick of hearing that it's "just IBS". No. It makes absolutely everything so difficult.

I'm so thankful people have responded to this because it makes me feel a bit more 'normal' and less ashamed I suppose. I know it's not something I can control but it makes me feel much better that other people understand and less embarrassed. So, thank you all very much! And to those who are suffering like me I wish you all the best and hope that we can all one day find some relief xx

Have you tried Low Fodmap? Also worth researching SIBO- it’s present in 60% of IBS cases. There is a US based researcher/gastroenterologist called Dr Mark Pimental who is a good starting point for looking into that.

Fellow sufferer here. At times I have got it under control. Some years ago I went completely gluten free and everything became normal for a very long time. It didn't last though, came back with a vengeance and what I ate seemed to have no bearing.

I do have long periods of time when all is OK and make the most of them. Like you, I'm nervous about eating and not being near the toilet, much prefer being at home.

Being calm and contented helps.

Sympathy with all you fellow sufferers. It's so demoralising when nobody takes IBS seriously. It can be debilitating, but as it isn't degenerative or life-threatening most people consider it completely insignificant.

My whole adult life has been blighted by it. I have missed family events because I couldn't leave the bathroom. I've been late for work so often its affected my professional life and career progression. I've missed school events like sports day and Christmas services. It's affected my mental health, my family life and my social life. It's put strain on my marriage and friendships, and inconveniences the people around me. But it's "only IBS" so the implication is that I should just somehow ignore it.

I'm not sure that my coping strategy would help you as your reaction to food is immediate whereas my symptoms are always the following morning. But I have discovered that taking - of all things - Fybogel, makes it more manageable. I don't take it according to the instructions (twice a day, with food) because that makes things worse. Instead I take one sachet every evening after my dinner has gone down, and crucially DO NOT EAT anything after that, but drink plenty of water.

I still have to run for the toilet first thing the next day, but one trip usually clears me out so that there's nothing left for my bowel to react to. Any residual cramps and spasms generally respond to a dose of ibuprofen lysine, and any further necessity to use the loo is not as urgent.

I'm not cured by any means, but I've been doing this for about 4 months and I'd say that symptoms have improved by about 60%, and I'm no longer scared to leave the house in the mornings. I still need to know in advance where the toilets are, but I don't feel like my life is controlled by it any more.

I hope this information can be of use to someone, when the usual dietary advice has failed.