To ask if you are an IBS sufferer

[RhodaCamel]

What helps with your symptoms?
I’m at the end of my rope with this.
I’ve had IBS on and off for the last 20 years and it’s completely controlled my life. I am now almost 47 and it has become much worse the last few years, I don’t know why that is, maybe my age and approaching perimenopause?
I’ve had endless tests:-
Calprotectin stool test which was negative
Bowel cancer FIT stool test which was clear
A clear gastroscope and biopsies
A clear colonoscopy
Scan on upper digestive system which was fine
Scans in pelvic area (ovaries fine but have uterine polyps but doctor doesn’t think this and IBS have any connection).

The gastroenterologist wasn’t helpful and just said that as the colonoscopy was clear he couldn’t help me anymore.

If I’m lucky I’ll get a week per month when my digestive system is calm (I have no idea why this is as I do nothing any different to normal when I have the calm days) but other than that it’s a constant up and down with symptoms of constipation or much looser, trapped wind, lots of gas and wind, grumbling, growlings and gurgling (these even wake me up at night) trapped wind type pain, massive bloating especially at night and just a general upset and angry gut.
Ive tried the low fodmap diet twice under a hospital dietician and that doesn’t really help even though I know it’s works so well for a lot of people, I’ve tried hypnotherapy, reflexology, I eat well, exercise, don’t drink or smoke. Tried all the IBS meds (the only one which really helped was buscopan but that gave me numb fingers so am scared to take again).
I just do not know what else to do or try!
How do you cope with your day to day symptoms and what works for you?

Have you been tested for celiac disease? A friend was diagnosed with IBS for 10 years before discovering it was actually celiac.

Yes, sorry forgot to add that I’ve had the blood test for coeliac and biopsies taken during the gastroscope and I had been eating gluten at the time which was recommended and they came back clear for coeliac.

I struggled a fair bit with it after having my gallbladder removed, it did eventually calm down and I find now that I eat keto its even better because all the bloating is gone too. With that said, when you're first starting keto and detoxing the whole poop situation definitely gets worse before it gets better, lol.

I kept a diary of my symptoms (I'm 46 and have been worse in last 3 years) and in my case it's definitely worse with hormonal changes, so loose at ovulation then more trapped wind and gas in last two weeks of the month. It's much better when I don't eat any evening meal, or have very light dinner. Also inevitably, stress makes it worse and causes cramps etc (not much I can do about that). I think knowing when to expect the symptoms has helped me deal better with them.

The biggest thing I've found that's helped is cutting out wheat from my diet. I did that 8 years ago on the advice of my GP and it's helped massively. I also eat very lightly in the evenings, nothing spicy, and don't eat any dessert, fruit or sugary treats. I too have days/weeks when I'm absolutely fine for no apparent reason and others when I'm not, but dietary changes and managing stress really help. I've also just gone on HRT and the initial signs are good that it's helping.

Stress is my trigger which took a really long time to work it out. I had all sorts of tests and camera's inserted in places I'd rather not have again and all were clear.
My biggest symptom is bloating and nausea, it can be agony as I'll go from a relatively slim belly to one that looks 7/8 months pregnant.
Colpamin is great, as is drinking peppermint tea. My periods tend to disappear as well now so I try to do things to help de stress. Pamper myself on a Sunday night (hair, face mask, IPL treatment, Epsom salt bath etc). Appreciate each person is different, but just my experience.

Could well be hormones. I've had IBS since a teenager although I've now been diagnosed with some other conditions.
I notice a definite pattern with my cycle. Worth keeping a diary of that as well as foods.
Try peppermint capsules or tea if you haven't already.
I also find a product called Silicolgel really helpful, you can get it off the shelf in Boots and Superdrug, it's a natural silicon liquid, so no known side effects, that absorbs toxins and wind. I find it really does calm things down.
Probiotics can help too. The best I know of is called Symprove which is very expensive but has good results.
Slippery Elm supplements have also had good results too though I've not tried it personally.
I'm also gluten free which has made a big difference, even though my celiac test was clear gluten definitely doesn't agree with me.

Have you tried FODMAP? It is an elimination programme which in my opinion is brilliant - really made me understand my key food triggers and how they work over a period of time. You can download an app or buy a book, I did both.

I would also recommend regular exercise and keeping on top of stress. I now have my IBS under control for 80% of the time. I do still have attacks and have no idea why but it is so much better. I also take Audmonal Forte capsules as soon as I feel an attack coming on and they seem to work for me.

IBS is so debilitating and as everyone is different it is almost impossible getting proper medical help. Good luck.

Forgot to add I also take probiotics in tablet format daily.

How old are you? My IBS became dreadful. I managed to control my symptoms with a very plain, clean diet and by going caffeine and sugar free but it wasn't much fun!

What eventually made the difference for me was going onto HRT. I hadn't linked my IBS to my hormones as I have a mirena coil so get no periods. I'd gone onto HRT for other symptoms but I haven't had any bloating, wind or diarrhoea since!!

You may find this article interesting OP: www.webmd.com/ibs/guide/hormones-ibs#1

I have always had issues, a few years ago I started experimenting with fermented food, making my own sauerkraut etc that did seem to help somewhat

Oh gosh I do sympathise. I had all the tests and shrugs too.

Mine has improved over time. I don't eat too much fibre, only have certain veg, and don't have too much dairy. I used to have porridge for breakfast, but realised that was making it worse - even though I kept being told oats are good for IBS

I don't eat spicy food and try to eat at similar times every day. I can't eat my main meal later than 7.30pm on a normal day, as it's just too late for my insides. I also try not to eat too fast or too much in one sitting.

I'm not currently taking any meds for it, as I didn't feel any benefit. I did take anti anxiety medication for nearly 2 years and had talking therapy for anxiety, which has also helped my IBS.

I'm thinking about trying a probiotic this year. Symprove is popular I think.

If you have Instagram there is a dietician on there called The IBS Dietician. Her page has useful tips and lots of comments from sufferers. You can pay for her "programme", but I haven't.

Btw I also found Peppermint in all forms was awdlful for me, even though it is always recommended.

Massively reducing dairy helped me.

Very low fibre diet helps here.

Same as you, had all the tests and nothing to show. Consultant suggested low fibre and it has really helped. Still have times when it is bad but they are definitely further between.

Google nhs low fibre diet for some guidance.

Good luck!

Thank you everyone for your experiences, mine are so very similar to most of yours. I’ve kept a food and cycle diary for several years and things are definitely exacerbated during mid cycle and a week or so before period and at almost 47 that’s getting worse so I do think hormones are playing a big part, I should enquire about HRT as I have other peri symptoms. I just can’t understand other times I can be fine one day the not the next (makes planning a life really difficult!). I really can’t see what foods make it’s worse although I have been dairy free for over 10 years as I’m sure that’s an issue and I’m now going gluten/wheat free for the umpteenth time just to see if there can be a difference, although that’s been hit and miss in the past. And high fibre is a definitely no-no for me as well as oats, they bloat me something terrible although I love porridge.
I haven’t tried probiotics tbh as the reviews seem so hit and miss with some people getting worse symptoms and that puts me off as I can only just about function in a day to day basic with the symptoms I have! Symprove reviews are all mainly great but it’s hugely expensive, I just wish it were a little cheaper and I could afford it.

CurbSideProphet could I ask which anti-anxiety meds you took? I read on the NICE guidelines that old style trycyclic meds were the best for IBS but my gp isn’t keen to prescribe them to me!

OP you could have literally described my past year. I had all the tests done too, my consultant was more sympathetic though and said he's really sorry but it's a common thing. He said you could line up 100 women and almost 25 of them would have the same symptoms with no direct cause at all. It's a nightmare isn't it!
The only thing that has helped me is Buscopan. And I think I've narrowed down one of the main causes for me to be stress.
Sorry I can't suggest anything more helpful, I just wanted to let you know that you're definitely not alone!

Avoiding my trigger foods. I don't take neds generally unless I have an attack.

My trigger foods are garlic, salad, quorn, sometimes I can't tolerate mushrooms - sometimes a small amount is OK.

If avoid I am just slightly constipated, if I have an attack it is severe pain and cramps followed by diarrhea. Once that is past I am generally exhausted and achey.

Have you been tested for bile acid malaborbation? This involves a Sehcat scan. It is a very easy test. You go to nuclear medicine and take a tablet. They take scans. You then go back 7 days later for another scan. This scan will tell if you are absorbing bile.
You will need to request this scan as most doctors have no idea what it is. I was lucky in that I saw a consultant for ordered the test.

I thought I had ibs for years, but it turns out this is what I have. I am now on medication to control it and far better

FlipperyGibbet it is horrid isn’t it? During the many years I have had it I have noticed that many more women than men seem to suffer so I do wonder if hormones as well as stress play a big part. It’s weird because sometimes I really believe stress makes it worse then I can have a really stressful time (like a few months back) and my digestive system was a calm as it’s ever been, such a frustrating condition!!

Hormones definitely an influence, certain times of the month I sometimes get migraines as well and that leads to terrible IBS symptoms. Stress, as others have said.

Only thing I've found that really helps is to avoid FODMAP foods when it's bad and just to eat very little, which isn't hard as by that point I don't feel like eating anyway.

@RhodaCamel I took Propranolol.

I have to keep on top of stress and also keep on a good schedule for eating / drinking / sleeping. It's hard work keeping everything together!

Yep same here in terms of super stressful times and no flares sometimes!! Crazy! I think @Toomboom might be onto something about bile though, I recently saw a new GP due to some different cramps i was experiencing (much higher up and more spasmodic and sharp than ibs cramps) and she's prescribed me anti acid meds with the potential for further scans of my small bowel...this rings true to what toom is saying and I'm wondering if this has been a cause for me all along!