to say IBS is ruining my life

[lucylouis]

I'm in constant pain. I always always have a hot water bottle on me as it's the only thing that helps, I now have these marks across my stomach from using it so much for so many years. I've been sent home from work as I physically can't stand and I just feel so so horrific. I've finally been referred to see a specialist but it's not till September. I'm on a million laxatives and different painkillers but nothing absolutely nothing helps. I'm at the end of my tether! Does anyone else have this if so what helps you?

I'm so sorry, I know how you must feel, I have IBS. Do you have IBS-D or IBS-C? Or mixed?
How long have you had it? Have you been tested for other possibilities such as diverticulosis?
A low FODMAP diet, peppermint oil, and Enterosgel (latter for IBS-D) has helped me.

@noctu thank you for those tips- I have IBS-C. Once went almost a month without going to the toilet- ended up on a morphine drip in hospital it was horrific. I've had it now for 10 years, I've just moved doctors and they've given me a coeliac test which was negative and now a referral. I haven't tried the Fodmap I did speak to my doctor and she said that she wouldn't recommend it for me as I've cut a lot of things out and nothing seems to make a difference. Have you done it? Just so frustrating 😭😭

Have you had a colonoscopy? Faecal calprotectin test?

I have IBD ( Crohn's) and was fobbed off by my GP for years, told it was IBS, anxiety etc. Blood tests all normal but a colonoscopy showed that not one part of my colon was healthy.

@Alsoplayspiccolo no tests or investigations! I'll push for a colonoscopy! Thank you

Please do!
Honestly, two GPs at our surgery tried to tell me it was all in my head - one even told me that "blood tests don't lie", when clearly they do!
When I eventually saw a gastroenterologist, he was furious and told me I must have been in horrendous pain, after the GP had told me I wasn't I'll enough because the last patient she'd diagnosed had had to be taken to hospital by ambulance.
I cried with relief when I finally got the diagnosis; by that time, I'd been shoved on antidepressants and had had a nervous breakdown because no-one would believe me and I couldn't leave the bathroom.

That was 10 years ago and I'm now in remission but still get pain and fatigue, so please ask for investigations. A faecal calprotectin test is simply a stool sample test which detects inflammation ( by the presence of calprotectin). From a positive result, you would be referred for colonoscopy. If you want to push things quicker, say you have blood in your stools.

Were you eating gluten normally when you were tested for coeliacs? If you have reduced gluten in your diet, the test maybe incorrect.
I suffered for years with what I thought was ibs but at 37 I was finally diagnosed with coeliacs, my symptoms disappeared within days and I felt human again!

If you once went a month without going to the toilet you definitely absolutely need a colonoscopy.

Thank you all I will deff push for further tests. I was 17 when it started and I'm 28 now so Its very much a part of my life it's horrific. I was eating gluten but maybe not enough but tbh gluten dosent really make a difference to my symptoms. I'll be asking for those tests next time. Thank you!

What is your diet like now? What have you cut out/what are you eating still?

Yanbu.
Mine is much improved (colonoscopy, endoscopy and gluten free) but I still have to plan things around it.

if IBS one of the odd side effects is that for constipation high roughage diet constipates me more. the bloat is dire - even now when I keep to Fodmap diet I boat within 15 minutes after eating main meals - But with a fodmap diet (I asked to be referred to nutritionist from GP) which you have to follow strictly for 2 weeks keeping a food diary & go lactofree as well - my -ahem- bowels are better than they have ever been - I do use/have prescribed peppermint oil capsules - I personally take 2 half an hour before breakfast & a little while later all is right with the world. You do need to be checked by specialist first but don't stop eating gluten before blood test as others have said. But don't give up - check with gp/pharmacist about medication you are using & ask if you could drink peppermint tea it can help for some people. The thing to note is that not all medications work on everybody & you may need to try different ones (as advised by doctor!!!!) for many of us we have slow transit or the peristalsis (waves of movement in bowel) don't work that well - peppermint works by strengthening these waves to aid transit (simply put, from what I gather) you may have a completely different issue altogether - which is why you need to write down symptoms & talk to doctor/specialist first.

Thanks to everyone for their advice. I've just seen the doctor, she's sending me for urgent bloods plus a urine and poo test so I'm glad they're looking into this more. I just had a complete breakdown in the doctors room so I'm so glad they're doing something!