Just can not get a grip on my IBS symptoms

[Silverumbrella]

And it’s making me so very low and depressed.

I have had IBS for decades.
Its been and down to over the years, some years I’ve managed to keep it at a manageable level, other times it’s been quite bad but I’ve always found a way managed to find a way to settle it or it’s just naturally settled itself.

However, around 5 years ago the symptoms started to become more and more frequent and has now reached a point where I have symptoms daily, on/off all day and even wakes me through the night. I have IBS-mixed but more prone to IBS-d and a constant bubbling, gurgling, growling gut which leaves me feeling very nauseous and with a feeling like I need the loo, on/off all day.

I know it’s a condition which never fully goes away and it’s something to manage rather than cure yourself of but I can’t even get to a place where I can manage it anymore and feel so trapped by this condition. I hardly go out anymore, have the most plain, boring (low fodmap) diet, only drink water and hardly any treats. I am afraid to travel anywhere, go out for meals, theatre trips, the cinema etc. My life has become very small and confined. It affects my relationship with DH and DC as we do very little as a family now.

I appreciate there is also a huge mental health aspect attached to the physical but it’s seems a chicken and egg thing and I can’t break the merry-go-round.

I feel that I haven’t left any stone unturned when it comes to finding relief. I have had many gastroenterology appointments which are always fruitless as my gastroenterologist seems uninterested tbh.
I have had a colonoscopy, gastroscope, pill camera endoscopy, a ct scan, various ultrasound scans and lots of different stool tests.
I exercise, avoid all known triggers, I’ve had lots and lots of CBT and therapy, I listen to gut directed hynoptherapy every day. I have tried all kinds of meds and antidepressants (these make the gut issues worse!).
I have trialled probiotics, tried kefir, live yougurt etc…….with no relief.

No one fully gets its, most people tell me it’s all in my head and I just need to get in with life (Well yeah! That’s what I’m trying to do but effing well difficult when your digestive system constantly reminds you that’s it’s there!).

Is there anything else I could do or try, I am at the point of desperation?

I am hoping someone on here may have been through this and can give me some advice or tips on something that worked for them as I’m getting more and more despondent and feel my life is over.

Do you know how much she takes @Silverumbrella ?

I find mebeverine to be very useful, particularly at 3x day.

My husband cured his ibs by going vegan and gluten free, sometimes he still gets triggered and now knows that he can't drink red wine as that's a huge trigger for him. He's no longer low fodmap either

I have it and at the moment (praise be) it's pretty under control. I'm completely caffeine free (inc from chocolate), which has helped. When this first started, (alongside newly diagnosed Barretts Oesophagus - 2 x twice a day of omeprazole), I went totally gluten and dairy free and on really bad upper GI days, was water only too. 18 months later, and suddenly I've been able to include a little of both back into my diet, although generally in the evening only, but being low carb in general has really helped, as has eating cabbage or other low FODMAP, low carb veg with evening meals. No other carbs with the evening meal....it does seem to have helped. Good luck - it's so depressing, esp on those days when you just keep needing to be 5 metres from a loo. x

Did you persevere with the antidepressant meds for 28 days ? Stomach upset is very common at the start but usually does settle after a week or two

I’m so sorry you’re going through this, I can completely empathise - I went through a really bad phase after having a panic attack on the tube as I was desperate for the loo and thought I was going to crap myself. After that I became a bit of a recluse and had to have CBT to get back onto public transport, I still have a thing about needing to know where the toilets are!!

I did low FODMAP and it settled for a bit but I still have occasions where it flares up, usually at the worst time (wedding day being one!) I always carry immodium instants with me and if I know I need to go out and I’m worried about it I’ll just take some in the morning as my gp told me this was okay. The other thing I found really helped was actually taking fybogel every day, it’s a bulk forming laxative so it regulates either way (doesn’t make you go!) another thing that seemed quite effective was taking caltrate (can get on Amazon) which some people on IBS forums swear by.

The real thing that seems to work for me though is making sure I’m getting enough protein in my diet. I only found this out when I got my personal trainer but eating 1g of protein per lb of body weight almost made me go the other way and when I was in Italy for my wedding and naturally eating a lot of pasta and pizza and little protein I really noticed the difference.

hope you can find something that works for you! It will get better 💗

Loads of green leafy vegetables, protein and lots of fat. Basically!

And yes, you can lose weight on it so that's important to watch. Do you know why you're underweight. It's not coeliac, is it?

I don't know if this will help as we're all different but I cured my IBS by taking probiotics everyday and eating a no processed, wholefood, vegetarian diet.
Its tedious because I can't eat anything ready made but it worked 100% for me.

9 years in and counting for me @Silverumbrella . A few things to consider, although we all know that what works for one person's IBS may not work for another's:
-Don't bother with the Zoe app, the app itself states that it is unsuitable for IBS suffers.
-Have you tried PREbiotics? My triggers are basically all the prebiotic foods (fermented foods, leafy greens. legumes etc), but I've been taking a pre and probiotic supplement called Good Guts by Phizz for a few months that has given me a noticeable improvement.
-CBD is one of those things that is life-changing for some people and makes no difference for others, but I got significant results with a high dose, although that's best done under medical supervision and it takes 6-8 weeks to kick in.
-There's an app called Nerva that uses hypnotherapy to help break the mind-body link that IBS supercharges. It did nothing at all for me, but my friend with IBD got good results.

So much interesting information here. Bottom line is that what works for one may make things worse for another. A big salad would cause me no end of painful cramps but a plate of chips would be fine. Trial and error and a food diary! Also someone mentioned focusing on things other than your stomach, hard when you're in pain but I understand the principle, I could spend all day researching IBS, deciding to try this that and the other and checking my stomach for bloating but this is probably not helping. It's such a horrible misunderstood condition, I'm sure my family get bored listening to my latest tactic. Anyway off to Hyde Park to see Take That, will try and sneak some food in as I went to see Guns N' Roses there last night, and had a vegan burger which has caused me no end of problems! Hope everyone has a peaceful stomach day!

Laska2Meryls she has started on a couple per day from a standard 500mg box (she’s using Lloyds chemist ones).
HoppingPavlova Mebeverine we’re working so we’ll for me at the end of last year and I’d finally thought I’d found a ‘cure’ but they suddenly stopped being effective for some reason. I’ve just requested some Alverine Citrate from the GP so hoping they may help 🤞
apric0t during my colonoscopy (for which I was awake) the gastroenterologist was chatting to me throughout the procedure and told me to go vegan, he said it was the best diet for gut health. It’s something I’d like to do as I hate eating meat but worry so much the extra fibre will exacerbate things. I suppose I should start gently adding things in. I hate the low fodmap diet, it’s so boring and restrictive.
KnackeredBack so many are suggesting low carb, I really need to consider this.
mrsbyers I have tried each one for at least 6 months, one for a year. I was miserable the whole time.
Thank you YorkshireLondonMiss I totally understand the public transport fear, that’s happened to me. I had to cancel my wedding, I just couldn’t go through with it, my digestive system went crazy. We end up having a tiny wedding, which still saddens me all these years later. I will take a look at the Fybogel and Caltrate, thanks.
MrsTerryPratchett no coeliac disease, had lots of tests and a stomach lining biopsy. I have been slim all my life but more so since being low fodmap and following such a restricted and boring diet!
Gettingbysomehow which probiotics do you take, was it trial and error or did you find the perfect one straight away?

Thanks Nowtworthlookingat it really wears you down when it goes on for years doesn’t it, I first succumbed to this in 1998! I did see on the Zoe app that it’s not suitable for IBS sufferers although they are working on something apparently. I’ve always been wary of prebiotics as they are high fodmap but maybe I should try them alongside probiotics as I know they are the food for probiotics so should go hand in hand with each other. I would like to try CBD oil, I keep looking on many of the websites but again it’s a minefield. I’ve tried the Nerva app, the Zemedy one and the IBS audio 100, sadly not been too helpful which is a shame.
itstimeforme it’s true, it’s such a case of trial and error for us all, I can’t begin to tell you how much money I’ve spent over the last 25 years on food, supplements, items etc to help ‘cure’ myself. I really should be spending it on fun stuff like concerts. Sounds fab, have fun.

You have my sympathy

I don't have anything like the severity you do and you have clearly tried loads of different things but one that has helped me is taking peppermint oil capsules. I usually have 1 every night before I go to sleep and it has really helped, I hardly wake in the night with symptoms any more.

I also take 1 if I've eaten something that has set me off. Because they are high strength capsules they break down in the gut and loosen the muscles which aids digestion. Someone on here recommended them on a thread one time and I'm eternally grateful to them!

I get these ones, they are good quality and if you have 1 a day it's enough for 6 months: www.naturesbest.co.uk/herbs-spices/peppermint/peppermint-oil-100mg/

They also help stop bad breath! 😁

Mine has slowly got worse so I did a private intolerance test and since cutting out / limiting these foods it’s made a massive difference! I would 100% recommended it to anyone

I empathise greatly as I also live with this awful condition. It affects my sleep, my work, my mood, just everything really. I have spent months tracking my IBS symptoms against my period/whole monthly cycle and see regular patterns of worsening at certain points. Might be worth looking at how your hormones are impacting it. Not that there’s much to be done about it, but in my case I can plan my life around it and know what to expect.

Thanks MargotMoon I used the Colpermin tablets for a long time but didn’t have much luck with them, I will try those ones though, I already use this company and have a lot of faith in their products.
Tinkietot Can I ask which test you used?
FrequentFlyer96 it really does affect every aspect of my life. Hormones have always played a big part, a week before my period and mid cycle were always times when it would flare but since I entered perimenopause it has reached a point where my symptoms are virtually all day, every day with the delightful addition of upper issues so I also have almost daily nausea and gnawing acid to throw into the mix. I definitely believe my hormones are playing a huge part.

I think perimenopause has a big impact on symptoms. My IBS was under control until peri hit. I am now on HRT and that has helped a little. I feel for you and cannot offer any advice but hope you find someone on here who can offer something to help. x

OP have endoscoped (not a real word!) your upper GI for Barretts signs too? I'm not sure if the upper issues go with the lower too, but they were certainly there for me and I only had recurrent indigestion with the Barretts, not nausea at the time. I was definitely not expecting a diagnosis of anything even vaguely significant. Since then, I get occasional nausea, sometimes dreadful and then vomiting, usually about 2 hours after going to bed. Fun times, but it does wax and wane over the months.

Thanks MrsPod I’ve got a prescription for hrt patches, I really need to try them.
KnackeredBack I had a gastroscope with biopsies in 2019 and a pill camera endoscopy last year, nothing was picked up even from the biopsies, I was expecting at least some gastritis with the kind of symptoms I get but nothing showed up. Do you take medication for it?

The SIBO thing is interesting. I have recurring heartburn, belching and IBS-D like symptoms. I might look into it.

Op ive not read the full thread but have you tried the anti inflammatory diet? It helped both dd1 and I to get our ins to a manageable state I now don't follow as fixed as to begin with but if I go to far off the path I return to strict for a month as it sorts it for me.

It's so bloody awful isn't it? My symptoms have nearly all gone for now and here's what's done it.
I had cellulitis and was prescribed antibiotics. And literally overnight my horrific tummy issues stopped.
So I asked my gp if I could remain on a low dose and that's what I'm doing. It's literally changed my life.

I don't understand how OP could do Zoe, whole-grain, vegan, anti-inflammatory diet, green leafy veg or keto if OP has to eat low fibre. I have yet to hear of a person on Zoe programme being told to eat lots white rice & few veg.

Sorry I don't have answers, but if OP is sure that high fibre is a disaster, then those options are out, too.

Enko I haven’t, thank you, I’m off to Google it now.
Thats interesting Ipadannie, was it a particular antibiotic? I find the standard ones make me worse.

Thank you lljkk I have trialled high fibre in the past and tbh would love for that to be the diet I follow as I love high fibre foods and maybe if I were more IBC-c it would work but as I’m mainly IBS-d I find the fibre, even if I introduce it gradually, really exacerbates things. It’s beyond frustrating and right now if I could just take a pill which would give me all my daily nutrients that’s what I would do because food holds no pleasure for me at all these days and I’m really sad that I’ve reached that stage.