Please read- IBS ruining my life!

[Washingupliquid]

Posting after yet another night of hell.

my life revolves around my IBS. I’m fucking sick of my life being ruled by where the nearest toilet is, or feeling fine then suddenly being hit by cramps and diarrhoea. I’m sick of cancelling things because of being unwell. I’m sick of crying in public toilets because everytime I come out the cubicle I have to rush back in with yet more diarrhoea. I’m sick of not being able to wear certain clothes because of the risk of a sudden attack.

im sick of it

im not stressed or anxious. I have a healthy diet and do a healthy amount of exercise. My life is perfect apart from my irritable fucking bowels and I’m exhausted- why can’t they just be normal? Just last week I had diarrhoea 23 times in one day.

ive tried food eliminations, probiotics, buscopan, dairy free, gluten free, wheat free, mebeverine, loperamide, FODMAP. I avoid caffeine, alcohol, and smoking. I have a good sleep pattern and a good lifestyle.

i know some people have it much worse, like IBD etc, so I feel guilty for complaining about IBS which is minor in the grand scheme of things, but I’m exhausted with it all.

I have a really supportive GP but we’ve exhausted all options. I’ve been seen multiple times by the gut doctors who basically told me to go away because it’s just IBS as my bloods, fecal and calprotectin were all normal (well they didn’t say go away, they just made it clear they were annoyed at me for wasting their time with IBS). I tried to explain to them that I believe them when they say it’s IBS and I’m not denying they are correct, but I need their help to control the symptoms. They just said stop being anxious but I’m not. I’ve even tried antianxieties in the past which didn’t help either.

I insisted on getting a full set of tests done as the symptoms were getting worse, and the gut doctor (reluctantly) put me on the waiting list for a colonoscopy and ultrasound last year as I hadn’t had either. I’ve had both last year and they were clear which was a relief for me, and they basically said there’s nothing else they can do for me because I have to manage it myself and it’s just IBS. They won’t help anymore. But it’s also beyond my GP as they said everything they’ve tried hasn’t helped it.

another question for anyone who knows this stuff more than me- I was always told a colonoscopy is used to decide if it’s IBS or not. I was told I was getting a colonoscopy but only found out afterwards by accident that it was a sigmoidoscopy I had not a colonoscopy- is that just the same thing? Does a sigmoidoscopy diagnose IBS too?

Thanks for reading if you got this far- I just needed to get everything off my chest.

I’m another suggesting a SehCat scan.

Also get tested for deficiencies too if that hasn’t been done. I do have mild anxiety IBS but when I was unknowingly anaemic it was awful and just as you describe.

How long did you try low FODMAP and did you stick to it religiously? I ask because even small amounts can trigger a bout and this can lead you to think the diet doesn't work when actually you're still consuming things that set you off.

It's been life changing for me, but it's a huge lifestyle change. Worth it as far as I'm concerned but it is a massive faff.

I had terrible IBS for a few years, it was utterly miserable and I lived off imodium so I am so sorry you’re going through this. I worked out what was causing it for me and I’ve not had it since.. and it was the contraceptive pill. Not in the slightest what I would have thought. I tried at least 4 types and I had it with all of them, I noticed because on breaks it eased off a bit. I got the coil and I’ve not had it since.

Have you heard of a drink called symprove? Its a live and active bacteria for your gut. The reviews on it are amazing. Might be worth a try.

Silicolgel can help settle your tummy but isn't as strong as immodium.
I agree it's miserable. As someone else said hormones and hormonal contraception can cause IBS too. I had a bad time on the implant, progesterone doesn't seem to agree with me.
In answer to your question about a sigmoidoscopy, it's basically half a colonoscopy. It will rule out problems with your sigmoid colon but not anything further round. A colonoscopy check all the way round.

I had IBS for years. My GP never investigated, I didn’t know until recently they should have.

Follow the advice above and push for specific referrals for a colonoscopy and the SehCat scan. Don’t feel guilted or pushed around by their behaviours. You can’t live like this and it is reasonable to expect to be investigated.

Things that helped me day-to-day: Optibac everyday (or similar prebiotic), Imodium comfort (preemptively), and Imodium instant melts as a top-up (can take without water so when you get the urgent feeling and you’re stuck somewhere, it’s easy to discreetly take and buys some time).

If I couldn’t get hold of Imodium comfort, then I’d take any loperamide with Windeze to help with the cramps.

I'm the same as you op and it is a fucking nightmare.

I take daily loperamide and omeprazole, and try and avoid triggers but sometimes everything is a fucking trigger there is no rhyme or reason to it

A friend of mine suffers with this and was found to have Ehlers-Danlos Syndrome. Took her years and years to get diagnosed.

Ahhh @Washingupliquid that sounds so awful, I really do sympathise...

I, like you, used to suffer IBS terribly, every day and it was exhausting, if anything it gave me anxiety which made it worse! I also was back and fourth from the doctors for over 20years, was told to try cutting things out, keep a food diary, FODMAP, drink more water, exercise more... I even had a Colonoscopy at the hospital (SO painful and literally a horrific experience) but everything came back normal, bloods were fine etc.

Unrelated to my IBS I became vegetarian after seeing an awful film about the meat industry. I stopped eating meat and my IBS literally vanished over a few days. It is still gone. I sometimes have flair ups when I eat certain foods (processed foods, and alcohol) and I cannot eat Quorn 😂

I am so amazed at the change in my digestion / toilet habits, it is life changing! I just cant believe that in 10 years of seeing various doctors and nutritionists not once did they recommend cutting out meat to see if it helped, even though I was told to cut out all kinds of things to see if there was a change...

Obviously your case might be different, but it could be worth a try? If you're anything like I was then I assume you're willing to try anything... I just wish I'd known this earlier, could've saved myself 20 years of hell!!!

How much caffeine do you drink OP? Going decaf helped slow my bowel down.