How can I stop IBS/gut issues ruining my life?

[Twoweekcruise]

That’s how it’s feels right now.
Despite endless doctor appointments, lots of gastroenterologist visits, a colonoscopy, gastroscope, blood tests, scans etc. Fastidiously following the low fodmap diet, eating low and no gluten/wheat, no dairy for years, no fat/greasy foods, no alcohol, coffee etc (food has become very limited for me these days, there is no joy in eating), taking/experimenting with various IBS meds, listening to gut directed hypnotherapy and exercising, I never managed to control my symptoms for more than a day or two.
I have IBS mixed, so I can go days/weeks with more constipated symptoms to suddenly flipping to diarrhoea and loose stools (last Saturday just out of the blue I have explosive diarrhoea now tummy very unsettled).
My digestive system is never settled, it is always gurgling/growling, I have nausea (often mid cycle for some reason), acid, bloating and gas especially in the evening. Mornings are a nightmare.
And despite all of these doctor/hospital appointments and tests I worry continuously that it’s something serious especially as I am nearly 49 and worry the older I get.
I am seriously becoming almost agoraphobic over it now and only go out to do my very part time job (which I want to give up because of my unpredictable symptoms) and food shopping (for my family as food has no appeal for me right now!). I don’t want to go anywhere and my social life has shrunk to nothing.
Has anyone else been in this position? What have you done/did to get relief help you live a ‘normal’ life.
From where I am right now, it’s a miserable existence.

This sounds awful OP and I'm loathe to suggest anything else when it sounds like you've done it all. Is there anything that preceded it? Do you take any other medications that could be interfering with your digestion?

I’m really sorry to hear you’re dealing with all that, it sounds dreadful.

How would you say your stress levels are? They played a big role in my experience of IBS (which in fairness was nowhere near as extreme as yours).

I’d also recommend listening to these podcast episodes. Dr Chatterjee interviews great experts and they may have some useful advice (particularly pertaining to gut health).

This sounds aweful, I feel for you. I'm no where as bad as you, but find stress is a major factor for me. On a Monday morning before work I can go ( explosively) about 4 or 5 times & sometimes don't make it blush. Sorry tmi. I find eating actimel yoghurts in the morning helps & also have very light lunches that hardly take any digesting in the day. At night when I'm back home I eat normally. It's almost as if my gut can't cope with digestion & stress together. Interestingly enough I'm on muscle relaxants for a damaged back & my ibs has improved. I watched a programme stating that your gut is your 2nd brain, not sure if this will be in the podcasts op has sent to you.
I hope you find a solution, it is a nightmare.

I've only really cracked mine by eating a lot less and going gluten free. I've been sloppy lately and back to regular pain, the extra food is never worth it.
Apparently I have a tight corner in my bowel and that's the area that often hurts. It's just easier to not put much food in.

This is what DH has done to put his IBS into remission and control his stress - the two are definitely linked and create a vicious circle which he needed to break:

• Follow the Fodmap diet with an NHS dietitian's supervision. She sent detailed instructions and we both downloaded the apps which you use to scan food products. He's on the reintroduction phase now.

It's a tricky diet to follow and easy to slip up, so we meal plan and make & freeze food like gf bread and biscuits. We also keep some of these meals in the freezer: www.fielddoctor.co.uk/collections/fodmap

The dietitian also told us about a clinical study which shows regular, therapeutic yoga can be just as effective as the Fodmap diet in dealing with IBS.

So, DH is also practising yoga 3-4x a week from a video I recorded for him (I teach yoga and could never previously persuade him to stick to it!). I can dm you the video link if you would like it.
He's also taking probiotics.

I would also recommend following Dr Chatterjee and reading his book The Stress Solution.

Good luck ♥️

There is a great book called Breaking the Bonds of IBS by Barbara Bradley Bolen. I also did CBT to help with the anxiety.

As someone who also has embarrassing body issues / noises I just wanted to say you're not alone mate xx

Have you had a Sechat scan to rule out bile acid malabsorption?
I thought I had ibs for years, then was sent for this scan who showed I have BAM. The explosive diarrhoea is a bit of a giveaway. I would ask your GP to arrange a Sechat scan --- really easy scan, you swallow a pill, get scanned, then go back a week later for another scan and this will show whether you have BAM or not.

I now take Colesevelam daily and this has really helped get things under control

rainbowninjait’s started 23 years ago after a string of stressful events, my digestive system was never the same again but manageable throughout my 30’s but another series of stressful times 4/5 years ago triggered this last lot and it’s just getting worse even though I manage the stress. moregarlic thank you, I will check out Dr Chatterjees podcast I do have one of his books.
Thank you Joy69 Stress definitely is my trigger but then the symptoms seem to go on for months even years later! I definitely agree with the brain being the second gut, any anxiety goes straight to my digestive system.
Meglettescond I am the same, I just can not eat big portions, it overwhelms my gut. I’ve started gf again this week and need to really stick to it to see if it will help me long term 🤞
Yogateacherherehello thank you. I do already follow the low fodmap but really do need to take up yoga again, I used to do yoga in my 20’s and loved it. What probiotics does your dh take?
Meringue33 that’s one IBS book I don’t have lol! Will check that one out, thank you.
DivorceAdvicePlease123 thank you, bloody horrible isn’t it?
Londonnight it’s one scan I haven’t yet had. I am still under the NHS gastroenterologist and have an appointment in a few weeks so will ask then.

I’ve namechanged here as outing details.

Op I totally sympathise. I also have unpredictable symptoms but these are caused by colon removal when I had colon cancer.
I keep a bottle of codeine linctus at home which I take if I’ve got a long car journey or anything when I haven’t got easy access to the loo.
However codeine is addictive so one has to use it sparingly.

Also, try and ‘go’ when you wake up as it can be the weight in your bowel which makes it hard to hold in.
Gelatine suppositories work well for me.
‘Bumpons’ can be bought online but I don’t think they’ll ‘hold’, so to speak if there’s a lot of weight on them.

It’s an absolute nightmare op, and spoils so many occasions that should be enjoyable.

It's this one @Twoweekcruise- he researched which ones have the level and type of bacteria which are said to help:

www.boots.com/boots-good-gut-live-friendly-bacteria-30-capsules-10269387

Wintersonata sorry you’ve had the double whammy of cc and then IBS. Thank you for the advice, I will check those out.
Yogateacherherehello thank you.

Hi @Twoweekcruise.

I'm currently treating my digestive system under the guidance of a private nutritionist after a vestibular migraine triggered one of the worse flare up of IBS I've had for a while, and I've had IBS for over 40 years.

The treatment is certainly settling things down and I'm two weeks in of a three month plan which includes probiotics and enzymes. I'd certainly recommend looking into this as a possibility for you too.
G'luck

MuthaFunka61 I feel your pain, I suffer from aura migraines and they make my issues worse!
I would love to see a nutritional therapist but sadly I just can’t afford it right now. I have contacted several in my area, their packages are from £300-£1000, plus supplements and tests.

I had this for years, getting progressively worse. I literally couldn't go out confidently ever and it ruled my life.
The thing that made a huge huge difference was a course of prescribed steroids. They were horrible and made me feel terrible for the 3 months I was on them but seemed to jolt my system back to a more normal situation. I was diagnosed with colitis when I was put on them.

Have you ever had a breath test to rule out Small Intestional Bacterial Overgrowth (SIBO)? Hydrogen SIBO causes diarrhea and Methane SIBO causes constipation... you can have either or both. It's a very common cause of IBS

Riverhousepuppy I have heard that before with steroids.
UpTheLaganInBubble I do often think I may have SIBO. I belong to a SIBO FB support group.

Following with interest as I'm similar... I think it started after my dad passed away suddenly & I was beginning menopause almost 3 years ago. No constipation but diarrhoea, cramps & pain every say. Was booked for laparoscopy but then covid hit, appointments cancelled & I was asked to submit stool sample - results have never come back (chasing with gp). Living on Buscopan, Nexium & co-codomol & doing FODMAP, but nothing helping, plus have actually gained about 3 stone which I can't fathom as turn myself inside out every day!!

Just to add - gp just says can't be that serious as not losing weight so not sinister - but it's not bloody normal is it!

Sorry to hear that @Twoweekcruise but it makes sense, the gut and the brain are so connected.

I've been using an app called 'my symptom tracker' to record what I eat and my bowel movements. I'm very anxious so get a lot of diarrhoea 😟

I'm also doing something called the renew food plan which is for people with autoimmune or leaky gut. Ironically I think antidepressants have irritated my gut.

I've got a bit of an interest in this as am training as a functional nutrition counsellor, the main tool we get trained in is using a food diary to track bowel movements, food and mood.

I agree it sounds like SIBO - if you are seeing a gastroenterologist they will probably just give you travellers diarrhoea tablets, but otherwise oil of oregano softgels work for hydrogen at least. There is lots of advice online - it can be really stubborn to treat though. Getting some good probiotics in e.g. kefir can really help.

wannabetter I’m so sorry you are suffering too. I really hope you get aome answers soon, it’s a nightmare trying to live a ‘normal’ life when you feel so bad in the tummy. Covid has mucked up so many appointments. I recently saw a gastroenterologist and gynaecologist but had been on the waiting list for 16 months before I got an appointment!
rainbowninja thank you. I have kept a food and symptom dairy for 5 years and just can not see a major connection to anything but maybe an app may highlight something that I am just not seeing?

Buttercup72 thanks. I am going to have to seriously look i to SIBO. I did see a private gastroenterologist a few weeks ago and she did say they are starting to recognise it more now (previous gastro appointments especially NHS ones have said a definite no) but she did say the tests were unreliable. I don’t know if spending £150 on an at home test would be a waste of money or whether I should just ask if I can be treated for it without a test as I believe some specialists are doing that now?

Not what you want to hear I'm sure, but my friend with similar symptoms, about a year ago had a colostomy and bag fitted. She is absolutely thrilled with the results. Able to go on long journeys again, eats a much wider range of things than she used to and says it has vastly improved her life.

I'm exactly the same and it's miserable. No doctor has every been interested, I got told similar to a poster above - that it couldn't be serious as I was still alive after years of it I have no life though. I've been diagnosed with diverticula disease which causes problems but the general day to day issues aren't caused by that. Cutting out wheat helped some of the symptoms but not much.
Kefir is supposed to help but I found it made me grumbly, I think I'm sensitive to dairy.