Gut issues are ruling my life (physically and mentally),will I ever overcome it?

[RedPandaWanda]

I was diagnosed with IBS 23 years ago, when I was 25.
Psychologically, I have never gotten over the fact that at that time I had an ‘accident’ at work (didn’t quite make it to the loo in time!) and the constant fear of pooping myself (although this has rarely happened again since that day) is with me every day and I live in constant fear.
Over the years the symptoms have waxed and waned but the last 5 or so years the symptoms have been mainly constant/daily in some way or form. I get about 3-4 ‘good’ days per month when physically and psychologically it feels fab to be free of symptoms (no idea why I get the good days, I keep a food/symptom dairy) but the rest of the time is very up and down with symptoms of needed the loo quick (not usually diarrhoea though, I am IBS-mixed so can go either way), gurgling, growling guts, awful nausea, excessive burping, pain, bloating, excessive gas and an awful general feeling of malaise within my digestive system.
I suffer from very bad anxiety and depression as a result of these symptoms but is not the other way around. It is so hard to get doctors to understand it’s the symptoms causing my poor mental health. I am certain of this because on the good days I feel fantastic like I could conquer the world!!
I have invested so much money, time and effort in curing myself to no avail.
In the last 3 years I have seen 4 gastroenterologists (all of them I have seen twice and a couple were privately which has cost me £400).
In 2019 I had a colonoscopy, a gastroscope, a ct scan, several ultrasounds, various blood and stool tests.
They all say it’s ‘just’ IBS and leave me to it.
I eat a mainly low fodmap diet, no alcohol, artificial sweeteners, no fatty or fried food, gluten/wheat free. I have a very basic, boring diet and have a poor relationship with food as a result of my symptoms.
I have spent a small fortune on IBS meds, books, subscriptions to IBS groups.
I have paid for several hypnotherapy sessions and recommended apps which haven’t helped. I still listen to a gut directed hypnotherapy app every night but they don’t help ease my symptoms, they are just relaxing at the time.
I have had lots of CBT.
I also see a psychotherapist every week.
I have had enough of living in constant fear of my symptoms and fear that I have something much worse.
I don’t know what else to do anymore.
At 48 I honestly feel that my life is over. I can’t be an attentive mum to my lovely dc and wife to my dh. Tbh, they have had enough of listening about my gut issues and I really don’t blame them. I feel that have I ruined their lives with my condition. I am so often completely pre-occupied with my guts, it’s hard not to be when it’s giving me so much grief.
Are there any other sufferers here on MN?
How do you cope?

have you been tested for coeliac disease (I expect you will have been) and were you already on a gluten free diet when you were?

Have they also ruled out H. pylori?

That sounds really miserable for you, have you been referred to a dietitian who may be able to help?

Have you tried Kefir? It is proven to change the balance of gut bacteria -it does take 2-3 weeks for levels of good bacteria to increase. I know it sounds rather simplistic, sorry, but I know a fellow sufferer who managed to get some improvements by drinking daily kefir, although it is an acquired taste.

No other advice sorry as there is a limit to what my friend discusses as she too sufferers massive embarrassment about her ibs.

I hope someone comes along with suggestions soon

Pastabest yes, both have come back as negative.
BeLessMe I have worked with 3 dieticians (2 NHS and 1 privately) they helped me with the low fodmap diet but sadly as it hasn’t helped they said I am one of the 25% it probably doesn’t help! I haven’t tried Kefir, I will look into that, thanks.

I have Crohns and it sucks. I have no suggestions I'm sorry!

Kshhuxnxk I am sorry, it’s a horrible condition, my friend also suffers.

Have you had a SECHAT scan to check for bile acid malabsorption? Sorry you’re struggling….I was told IBS for best part of a decade and turned out to be BAM. Not perfect now but so very very much better ….

I really urge you to look into SIBO (Small Inteatinal Bacterial Overgrowth) and IMO (I tests all Methanogenic Overgrowth).

These conditions have recently been proven to be the underlying cause of IBS.

The best places to start is the work of Dr Mark Pimentel. He is a clinician and researcher based at Cedars-Sinai.

The scientific research and knowledge in this area has moved on massively in the last decade and sadly the NHS (and also private medicine int he UK) is very much playing catch-up.

Here is one of his tweets:

mobile.twitter.com/MarkPimentelMD/status/1365042041281908736

“Today I'm reminded of a quote from a recent speaker. "IBS is a disease of hysterical women". NO! This was shocking and sad. #IBS is a real DISEASE in part caused by food poisoning and the #microbiome. This 2012 piece is dated but tries to address this. rdcu.be/cfPLD”

Basically SIBO underlies a lot of IBS-D and is the result of food poisoning, especially repeated bouts of food poisoning. So it’s like the long Covid of food poisoning. This type can cause unexplained rapid weight loss

IMO underlies a lot of IBS-C and is caused by the presence of organisms which produce methane I the gut. It can also cause unexplained weight gain as the presence of methane a slows gut transit time and this means people with this virus xtra t more calories from food than people without methanogens.

IBS-M is often when there is both SIBO and IMO and they alternate.

Antibiotics treatments are already in use that cure many cases and new treatments for remaining persistent or complex cases are being developed at the moment.

For some people these are a cute, for others they help very much with symptom management/

There are also more sophisticated dietary approaches. I have a persistent case and at the moment use dietary approaches to manage my condition whilst I await a new antibiotic treatment

It’s elements of Low FODMAP, Fast Tract and low sulphur diets. Currently I symptom free whilst diet compliant for months at a time.

Here is a good introduction
New perspectives on IBS

*Underlying cause of most IBS

Poppy209 this has been suggested to me before. I mentioned it to the gastroenterologist but he said no. I may have to look into getting this privately, can’t afford it but I don’t want to live like this anymore. Did you have similar symptoms to mine?

Have you been tested for bile acid malabsorption

CeCeSchmidt I have looked into this and have almost all the symptoms however all of the gastroenterologists I mention it to are very dismissive. I think it’s another thing I will have to pay for! I am seeing a naturopath next week and will talk with her about it. Thank you.

Snapple21 I haven’t, it’s something I will need to look into.

I was also going to ask whether you have been tested for bile acid malabsorption? Your symptoms sound very similar to what I had.

For years I was told my symptoms were ibs. Then 3 years ago I was tested for BAM via a Sechat scan and they found I actually have this, not ibs. Now on tablets [ binders ] to help control it.
They say mine is due to having my gall bladder removed 15 years ago [ very common apparently, you just aren't told that the removal can cause this].

I have "just" IBS, often have fecal incontinence and eating makes me feel genuinely poorly a lot of the time. The best way to control it is 48hr-72hr fast weekly. (Not a true fast, I often drink Coca Cola to keep me feeling ok). Often I eat on Thursday night and don't eat again until Sunday. This controls the majority of my symptoms. That said, I still have episodes of incontinance. I just get on with life. You've spent years of your life being miserable and impacting upon other peoples lives for what? The CHANCE of something happening? Even if it did, so what! It's temporarily embarrassing but it happens to loads more people than you think. Maybe it's time you started living your life and enjoying it again.

I'm just reading through your thread, @RedPandaWanda, as I have been plagued with IBS these past few years ...

Same here. I've got it mostly under control by going gluten free but I've had a wretched two months and it's flared up my piles and fissures again. I could honestly cry.

I have ulcerative colitis and it's dreadful. I really do feel for you.

I do live a full life though, even with the fear of accidents. Things that have helped are...

• Researching where loos are. Honestly, my knowledge of public loos on the London transport system is encyclopaedic.
• A "just can't wait" card which asks people to help if you need urgent access to the loo. People do tend to help when I've needed to ask.
• Being the organiser in my group of friends. If I do the planning, I can make sure we take our lockdown walk in a park with loos; book the theatre ticket on the aisle for a quick exit etc. My friends are largely unaware of these adjustments so it's not a big deal.
• Carry fresh knickers, wipes and body spray just in case.
• Work from home as much as possible.
• Have a spare pair of trousers at the office.

About once a year I have an accident. It's fucking grim and I hate it with a passion, but I clean up and get on with my day.

Have you looked into EMDR to get over the trauma based events that your brain is stuck on?

Kerry Bone's book 'Principles and Practice of Phytotherapy: Modern Herbal Medicine' has an excellent section on gut health - and advocates the weed and feed approach. Basically the idea is to weed out the 'bad' or overgrown gut bacteria, and then to feed the beneficial ones. Conventional medicine doesn't seem to know what to do about IBS, so might be worth pursuing a herbal medicine approach - can't do any harm in any case.

Can I say something that is kind of related but only loosely. Take it or leave it of course. Your reliance on medical people, and paying for it can be very misplaced. I was a hypochoncdriqc apparently for years. Fobbed off with it's all in your mind, do yoga to distract yourself, get some counselling, take antidepressants and all the other bollocks they do. This because all tests were clear. Of course they were bloody clear, they were testing the wrong things. It was actually lupus.

Psychologically, researching things, trying them, recording them, and managing them really hoped me. It also meant that 8 felt less reliant on those that had spent years telling me I was making it up. The being in control aspect made the pain easier to manage.

I only say this, because of @CeCeSchmidt's post. I've just had a month long run of campylobacter. It was truly vile. In every way. But when I was reading up about it it can often trigger ibs and food intolerance, so that post caught my eye as it seemed to make sense. Ut when you said you'd pay for help again my heart sunk. Pay sure, but go in forewarned. Just because they dismiss it, that means very little in my experience. If you research and apply it, and go in saying 'this works etc' they have less dismissal.opportunities.

I hope this makes sense, and you take it in the spirit I meant it. As I say, just ignore if it won't work for you, but thought aid type it anyway.

That month of food poisoning was the longest month of my life, you have my sympathies. Xx

Londonnight I will definitely ask about BAM.
MrMistoffe this is my issue, it has gone on for so long that the psychological issues connected to this are having a much deeper impact than the physical. I would love to start getting on with my life and so glad you are but unfortunately for me, at this moment in time it’s not that cut and dried. I really, really wish it was.
SpindleSpangle I’m sorry you are suffering too, hopefully there may be some advise on here which can help you 🤞
Megletthesecond I suffer with those too, I am also in a flare with my haemorrhoids, so painful, you have my sympathy.
LincolnshireLassinLondon thank you for those tips.
daisyjgrey I am having EMDR with the psychotherapist I see each week.
ceibatree Thank you, I will check that out.
housemdwaswrong thank you so much for the advice, so sorry you’ve been suffering recently, that sounds very rough x

@RedPandaWanda have you actually had coeliac biopsies taken? I was 40 by the time I was diagnosed with coeliac disease, eventually via genetic test (HLA DQ2) and biopsies, my antibody tests came back negative for 15 years.

Has your gallbladder been checked? I have all of your symptoms with gallstones.

My friend's health has radically improved after treatment for SIBO, definitely look into that

MissSmiley I have had 4 blood tests over the years for coeliac and they took 5 biopsies during my gastroscope, I was also eating gluten regularly when I had the biopsies.I’ve not had any genetic testing but hopefully the biopsies were enough?
tiredanddangerous I had a ct scan and upper digestive ultrasound, I’m not sure if gallstones would show up on any of those?
mswales I do have many SIBO symptoms. I can’t get any NHS doctor or gastroenterologist to take that seriously so I am hoping the naturopath I am seeing next week will look into it for me 🤞