IBS sufferers

[Skooblies1]

Dear all. Still fairly new to posting and apologies if this comes up too often. I suffer from chronic ibs on a ridiculous level (over 20 years). It has affected my life in all different ways over the years and I wanted to see if I could get a discussion going to see what works for others and maybe vice versa.

Anyone out there??

Warning! This is not a subject for anyone who is not comfortable talking about poo!

[MajesticSeaFlapFlap]

Me.
I've had a bad few months as well due to stress causing flare ups, I had nausea and diarrhoea for 4 week and am now having a bad day every week no matter how careful I am with my diet.

I've had 10 days clear now on a very boring diet of bland soup and porridge with a smidge of golden syrup.

I had my first normal poo yesterday and was ridiculously happy

[Skooblies1]

Poor you majestic. My ibs is completely diarrhoea based all the time. I can't say I'm used to it but it's normal life for me. So I know if you don't normally have it how distressing it can be. Have you tried the FODMAP diet. It cuts out foods where the sugars cause problems. It's worth looking at as you might spot a food on there that you didn't know was a trigger. I hope you feel better soon. Were you taking any medication for it?

[lordsteatime]

I have had ibs for about 10 yrs have had a really bad year for it, and just did about 6 weeks on fodmapp and then adding things back in.
I can 'go' up to 6 times day i and have now got to the stage when the skin on my bottom is wearing out. The Fodmapp does work but takes a long while to give the gut time to heal and then reintroduction needs to be very gradual. I think I need to follow this diet more or less all the time to get any real change in pain level.
I got my ibs from severe food poisoning, I nearly died from it, so I do feel lucky, but its given me permanent bowel damage. My first referral doctor told me that I would just have to put up with it as there was nothing he could do.
So, have been living on boscopan daily on high doses for first few months until my gp said it was making an impact on my liver, which was recovering from the food poisoning. So I only had them when pain got to a peak during the day. I have tried other meds and occasionally a GP will give me an anti acid for the reflux, but had never given them to me on repeat prescription, they only give me enough for one month and then I have to go back. Before my last FODMAP diet I was drinking a large bottle of gaviscon a week. i have also tried the mild dose of antidepressents which did wonders but after the ibs improved that short course stopped.
have asked for more help recently as things are going rapidly down hill.
I have had another colonoscopy as a new doctor wants to confirm its ibs and not anything sinister as recently they suspected internal bleeding.
i had that colonoscopy and the incredible pain after wards from the bowel cleanser and the actual operation with no pain relief , only to find that my follow up appointment after the july op isnt until 28th december!

I am now resistant to all pain meds, and if my ibs swings to constipation nothing over the counter works either.

i getting fed up of dealing with this on my own with no real medical support.

[ILoveMyMonkey]

Ibsd sufferer, was taking immodium almost daily. Gave up gluten last year and seen a massive improvement and have got my life back. Had been tested for celiacs but it was negative so maybe I'm just intolerant, not sure but wont ever go back to eating gluten again.

[Skooblies1]

You have had a real rough ride lordsteatime, and I feel for you with the damage done by the food poisoning. I too will go 6 times a day and sometimes with just a minute warning so I have to run fast. I pretty much live in Imodium just to get me through any normal social situations.

However, I had a massive breakthrough recently as I read about other sufferers taking codeine phosphate 15mg. It is a an anti diarheal at that dose. It works amazingly! Pain gone and no worrying about running to the loo. Unfortunately your body does become tolerant to it so if you use every day it is less effective. I came off it a couple of weeks ago, to reset my tolerance as I'm going on holiday tomorrow and the thought of a nine hour flight with constant pain and diarrhoea is horrible. I know I have that to take tomorrow and through out the holiday and then I will give myself a break when I get back. I would urge you to see your go about it. It's only 15 mg so not a dose you should worry about but it can work so well

[Skooblies1]

Hi ilovemymonkey I have also been told I should try gluten free but it seems so difficult and add in FODMAP and it's really restrictive right?

[ILoveMyMonkey]

hi skooblies, I haven't done FODMAP just no gluten and tbh I've just replaced all my usual food for gf options i.e normal cornflakes for Nestle GF ones, normal bread for genius GF seeded bread or warburtons GF artisan loaf, normal pasta for GF pasta etc so I haven't found it restrictive at all although took a while getting used to checking labels and it's amazing what random products have wheat / gluten grains in them.

[Skooblies1]

Sounds good. I just love food so I've found I've had to really think about some of my choices so that I don't trigger a (worse than normal) attack

[ILoveMyMonkey]

It's rubbish isn't it trying to find the trigger but worth it not to br 💩💩💩 all day long .

[MiaowJario]

I do gluten free and low FODMAP Skooblies and it's not really any more restrictive than low FODMAP on it's own. A lot of processed gluten free products have fodmap trigger foods in them though, so it's not like this whole world of GF stuff opens up to you.

My IBS is post infectious too Lords and one thing I have found really useful is a probiotic called Jarrow Ideal Bowel Support. I took a long course of them and they really helped. The capsules they come in contain potato starch not FOS so no FODMAP triggers, and also it means that even when you have stopped taking the probiotics, eating potatoes really helps rebalance your tummy. I also took a long course of Prescription Asist probiotics. I got both from Amazon.

Combining the probiotics with the Low FODMAPS diet I have gone from alternating between IBS-D and IBS-C to going once day (no problems with consistency), unless I slip up with diet our have a stress trigger.

I think the passage of time also helps- I read a study that said over 50% of post infectious IBS suffered recover after 6 years. I am about 4 years post infectious now and do see improvements, so fingers crossed.

[KittyKrap]

Like Skooblies, I've had it for over 20 years. The weird thing is that I only had sugar in tea and coffee and cut it out last year (wedding!!!) and it made a HUGE difference. Pasta and bread do me in though.

Big pooey hugs

[AnnieOnnieMouse]

I was sent for the camera where the sun don't shine jobbie quite a few years ago. I'd been going to my then gp complaining, and he sent me, I think to get me to STFU. Consultant advised me to cut ALL cows milk products out of my diet, very strictly, and it was like magic!
I think we all have our specific triggers - mine cows milk and kiwi fruit and strawberries. Something else, too, minor, but not identified yet.
I now take a shedload of supplements, inc probiotics, and feel very close to normal, compared with at my worst, unwilling to leave the house at all, just in case.

[Simmi1]

I developed IBS suddenly after the birth of my second child nearly one year ago. I tried low fodmap, gluten free and dairy free (2 weeks at a time) but no improvement. I was having predominantly diarrehea. I still have it but it's not as bad as it was. I think the only things that helped me was a low dose of amitriptyline and an acia fibre supplement. About 8 weeks ago I then started experiencing bladder symptoms - UTI symptoms but no infection. It's like my health just fell off a cliff for no explicable reason

[Skooblies1]

I know that much of mine is stress based. I've had cameras up and down, biopsies, etc and they all come back with spastic colon which is ibs. The doctor told me. I know for sure medically that I'm lactose intolerant so that is quite easy to cut out. Doctor told me if I can 'cut' the connection between my brain and my bowels that will make a huge difference. How can you do that when life is so stressful anyway. I have worked myself up into a tizzy the past couple of days. I'm normally a confident flyer but when you are on a journey to Europe things can be 'plugged' for the duration. However here I am in a hotel at Heathrow and I'll be getting on a long haul flight to Florida and really worrying about how I will cope with that duration and the times either side of the flight. Sorry for the rant, but this can be so shit (no pun intended) sometimes.

[MiaowJario]

I know mine is exacerbated by stress too Skooblies. It got a lot worse when we moved to a city, to a flat right in the centre. The general hustle and bustle was fine, but we witnessed a serious assault after a couple of months (were witnesses in court later) and it really unsettled me. Couple that with running into an old "friend" there who sexually assaulted me over a decade previously. He had moved there unbeknownst to me a few years earlier, set up a business in his own name. Seeing the name of the business on signs around town was really, really nerve wracking.

We moved back to somewhere more rural and how much better my IBS is is unbelievable. DH was offered a transfer and we jumped at it. I had gotten to an alright place but had to be so disciplined with my diet- one little slip and I could be bad for days.

Some foods that used to trigger me even in small quantities (e.g. Gluten free oats, melon, pineapple, anything with gelatin) are fine now.It sounds like a little thing, but the ability to have Parma ham with melon, or porridge or gluten free hob nobs makes a big difference. I am just generally less nervous and stressed. It took a while to work out what was really the root of my stress, but when I did we realised it was a thing that was reasonable to be stressed about, and there was no point in forcing myself to put up with it.

When we have to travel, I take a course of probiotics (the Ideal Bowel Support) before and during. During flights/travel days I have enough potato based snacks (plain pop chips are good) to keep me going for a day or so in case of delays etc, so I am not left to try to find food that won't trigger me in a packed airport. It's quite reassuring.