IBS is crippling me

[nestertables]

I've had an IBS diagnosis for years I know my triggers and a flare up usually last a day or two before settling down and were very infrequent.

The last 8-10 weeks it's been horrendous. Urgency, 24/7 abdo pain (feels like insides from ribs to belly button are on fire/melting and would be swollen and angry if I could see them!) and loud embarrassing gurgling.

It's now at the stage where I don't eat if I'm having to leave the house as it's so unpredictable.

I don't eat at work as I don't always have immediate access to a toilet and If I have to be somewhere I have to take loperamide and lots of it to ensure there's no embarrassing hunt for toilets.

A recent trip to the gp resulted in her asking "and what do you want me to do about it?" When I described the symptoms and the impact it's having on my daily life.

I was given buscopan and told to take peppermint tablets, neither of which have done anything and I'm at a loss as to what to do next.

Does anyone have any advice?

Have you thought about the FODMAP diet?
Don't try going it alone though, it's complicated and too much potential for getting it wrong then thinking it doesn't work.
You need support from a FODMAP trained dietician. You could ask your GP to refer you, although not all NHS dieticians have done the extra training.
If you google you can find a private dietician in your area.

I've used FODMAP before and I'm trying to do it for the passed 4 weeks.

Milk, tomatoes, bananas, garlic and lentils were my main triggers but now it just seems like everything is a massive trigger, even food that was "safe" previously.

DR advised against using loperamide at all but it's literally the only thing that means I can go to work.

I work shifts and don't always have immediate access to a toilet so can't take the risk of not taking it.

Saccharomyces boulardii (a certain strain of probiotic) has all but cured my IBS and are well worth a try. They improved things immediately to a certain extent then over the next 6 months my symptoms lessened even more so they’re worth sticking with. Expensive though and you have to take 2 or 3 twice a day to get a good result.

I'm willing to try anything!
Previous probiotics (acidophilus) made the pain worse and I couldn't continue taking them.
I'll risk these and hopefully they're the miracle cure I need.

Probiotics can sometimes make ibs worse when you first start taking them, due to "die off" of bad bacteria (herx reaction).
It took a month before I felt better.

Did the GP give you a stool test called fecal calprotectin? There's many examples of people going for years with IBD misdiagnosed as IBS. This stool test will test for inflammation.

Thanks I'll try and stick it out with the probiotic this time round.

@romeoonthebalcony The dr was very unhelpful, literally couldn't have cared less, I'm going to try and go back to the DR this week and ask for the stool sample test. This feels awful and way worse than any previous flare up, it's really getting me down and I feel exhausted being in pain all the time

I had this for decades - I was on the toilet 10 times a day - I could not even get as far as work without having to stop for the loo - or a hedge - whatever.

Eventually I was referred to a consultant in Oxford and he thought I had some problem with malabsorbtion of bile salts and put me on Questran, which not only cured the problem instantly, but effected a long term cure as I was eventually (after several years on it) able to tail it off and now no longer take it.

You do have to persist to get a proper diagnosis - the phrase "it is just IBS" used to drive me wild. It is not "just" anything! - it is a life wrecker! I held down a job and brought up 3 children whilst in this state. The thought that it could have been cured earlier makes my blood boil So much life wasted!

Thanks @Mishappening that's interesting, I've looked at the malabsorption thing (I have spent a lot of time trawling the internet trying to find answers) it's so frustrating I literally have to plan journeys and days out around toilets! I'm a grump and must be awful to live with!

Today was the last straw after going shopping and only making it to three shops solely to use the toilets and having to come home empty handed. I need to fix this.

I would go back and say it needs further investigation! You could have contracted an infection making things worse. Have you ever had a colonoscopy? Been tested for coeliac?

I had what I thought was an awful flare up recently, was really struggling..I tried to find a pattern..finally twigged it was ruddy chewing gum!

@FaithInfinity I had a lot of tests around 6 years ago, helicobacter pylori, endoscopy and colonoscopy along with blood tests for anemia (on the low side) celiacs and something else I can't remembered.

They were inconclusive so diagnosed with IBS, told that 12 years of shift work was probably to blame and given info re FODMAPS and common triggers.

The DR was so dismissive that it put me off going back but I need to suck it up and be a bit more assertive.

I had a dismissive doctor who put me off asking for help. ‘Lose some weight’ was particularly helpful (I was only a stone overweight at the time). Thing is, it could be H. Pylori or helicobacter this time even if it was negative before so it needs to be tested. I find it quite effective to take a stool sample in with me and stick it on the desk if I can!

Have you been tested for SIBO? It's diagnosed by a breath test

@FaithInfinity that does seem to be the go to reply for pretty much every ailment! I'm within the normal BMI range at 10st5 and 5ft7. I was given the antibiotics off the back of the h.plyori test.
I like the sound of your trick I might need to try it out

@up no I haven't. Something to read up on and possibly mention. Some of the symptoms do fit (not only the bowel related ones)

@nestertables the probiotics o mentioned are the only ones that have ever helped me. It does say to expect a bit of a flare in the first few days but then it should settle. I didn’t actually get a flare up at all and they worked quickly and effectively in my case.

@nestertables It's worth getting tested for even just to rule it out, as if you do have it, it won't go away without treatment

This can't go on you poor thing. Change your GP and ask for further tests.

If you can afford it you can do comprehensive stool tests and SIBO breath tests privately. You shouldn't have to but your quality of life is being ruined it sounds like and your GP sounds obstructive. Alternatively you could keep a detailed stool/symptoms diary and take it into the GP so they can see the extent of the problems and see if that helps to make them actually do something. You can get good templates from the IBS network site or others like BUPA.

Sorry not read full thread but have you had any other tests before your ibs diagnosis? As far as I'm aware they should carry out tests and only diagnose with ibs when other conditions have been ruled out. Although I know from experience that it's very easy to fob generalised gut issues off onto ibs. I would really push for more tests as this is no way to live.