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?

I suffer with similar, diagnosed with IBS-D a few years ago but have recently gone back due to hair loss and low ferritin. My symptoms are only loose stools. Had a clear colonoscopy, clear MRI, clear bloods and stool test and had a gastroscopy a week or two ago to check for celiac. Bloods clear for celiac but they took biopsies to double check. And for h pylori. Also finally awaiting the bile acid test. It’s been so long I’m desperate to get things sorted!
I really feel your pain. It’s draining isn’t it.

Twoanklebiters it really is so draining. I hope you get it sorted. I too have very low ferritin, do you think it’s made your gut issues worse? I am trying to see if there is a connection.

@RedPandaWanda

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.

This is by far the nicest Kefir:

www.tesco.com/groceries/en-GB/products/297860097

Have you tried sauerkraut?

You need to take a small amount at a time (a teaspoon) and build up but check with your doctors before you do.

This is the nicest:
www.ocado.com/products/raw-organic-fresh-kraut-classic-crunch-sauerkraut-sea-salt-99505011

I feel for you. I have ulcerative colitis and can sympathise. I often feel the anxiety that comes with the physical symptoms is the hardest to deal with.

I'd love to tell you how I cope but in all honesty I'm not sure...

Actual things I do to help in the day to day:

Research my route and know where toilets are along the way.
Take spare clothes, knickers, and wipes. On really bad days I nick one of my babies nappies to put on.
I have a radar key for disabled toilets to avoid queues.
I try to make plans as late as possible in the day.
I don't eat or drink before I'm due to go out.
I talk to my friends, I'm always cancelling plans but they understand why.

Oh and also worth speaking to your HR and getting occupational health involved. They were really helpful and help put in practical steps at work and to help your managers understand your illness etc

ILoveAllRainbowsx thank you for that, I’m doing a Tesco shop tomorrow, will see if they have the kefir.
Amichelle84 thank you for those tips, I must get a radar key, that would give me peace of mind. I work as a PA for a disabled lady, she is my employer, no HR or Occupational Health unfortunately.

I haven't read all the comments, literally posting quick to say, this was me for bloody years.
IBS i kept being told, then anxiety honestly i felt bloody awful with a few days break inbetween.

It turned out to be a sodding dairy intolerance, 2 years dairy free now and never had any of that again, UNLESS i slip and eat something by accident then its a awful reminder what i lived with.

@BeLessMe

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

I really agree with this. Everything starts with your gut biome. It's very misunderstood but plays a big part in immunity. As you are no doubt very aware, it's a huge organ. It's an inexpensive and painless place to start.

Kefir is cheapest from polish shops as they drink it daily. It's about 70p. I've been buying mine from these shops for 7 years, before it was easily available in the uk.

The other things to increase your gut biome is fermented vegetables such as kimchi or sauerkraut. They are an acquired taste but do the job. You only need a little bit but Regularly.

Your situation sounds miserable I hope things improve.

It just sounds incredibly tough, OP. I read a good book by a crohn’s sufferer called ‘what doesn’t kill you’ by Tessa Miller. it’s very US in its style but I found it helpful to understand chronic illness and particularly digestive illnesses. Sending strength to you.

Muddlebubble I am awful with dairy too, haven’t touched it for years.
Beautifullymad I must definitely experiment with adding good bacteria into my diet, thanks.
TiddleTaddleTatt thank you, I will have a look at that.

I have IBS, it rules my life and it's shit (pardon the pun). I always need to know where the toilets are and if there's a hint of anxiousness it's even worse. It started when I was 4, I pooped myself at school several times and had to be collected and it's come from there I think.

itwasntaparty isn’t it awful? I think the psychological aspect from pooping myself at work has had a profound affect on how I deal mentally with the condition but I just don’t know what the long term answer is?