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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Please read- IBS ruining my life!

37 replies

Washingupliquid · 18/08/2022 02:34

Posting after yet another night of hell.

my life revolves around my IBS. I’m fucking sick of my life being ruled by where the nearest toilet is, or feeling fine then suddenly being hit by cramps and diarrhoea. I’m sick of cancelling things because of being unwell. I’m sick of crying in public toilets because everytime I come out the cubicle I have to rush back in with yet more diarrhoea. I’m sick of not being able to wear certain clothes because of the risk of a sudden attack.

im sick of it

im not stressed or anxious. I have a healthy diet and do a healthy amount of exercise. My life is perfect apart from my irritable fucking bowels and I’m exhausted- why can’t they just be normal? Just last week I had diarrhoea 23 times in one day.

ive tried food eliminations, probiotics, buscopan, dairy free, gluten free, wheat free, mebeverine, loperamide, FODMAP. I avoid caffeine, alcohol, and smoking. I have a good sleep pattern and a good lifestyle.

i know some people have it much worse, like IBD etc, so I feel guilty for complaining about IBS which is minor in the grand scheme of things, but I’m exhausted with it all.

I have a really supportive GP but we’ve exhausted all options. I’ve been seen multiple times by the gut doctors who basically told me to go away because it’s just IBS as my bloods, fecal and calprotectin were all normal (well they didn’t say go away, they just made it clear they were annoyed at me for wasting their time with IBS). I tried to explain to them that I believe them when they say it’s IBS and I’m not denying they are correct, but I need their help to control the symptoms. They just said stop being anxious but I’m not. I’ve even tried antianxieties in the past which didn’t help either.

I insisted on getting a full set of tests done as the symptoms were getting worse, and the gut doctor (reluctantly) put me on the waiting list for a colonoscopy and ultrasound last year as I hadn’t had either. I’ve had both last year and they were clear which was a relief for me, and they basically said there’s nothing else they can do for me because I have to manage it myself and it’s just IBS. They won’t help anymore. But it’s also beyond my GP as they said everything they’ve tried hasn’t helped it.

another question for anyone who knows this stuff more than me- I was always told a colonoscopy is used to decide if it’s IBS or not. I was told I was getting a colonoscopy but only found out afterwards by accident that it was a sigmoidoscopy I had not a colonoscopy- is that just the same thing? Does a sigmoidoscopy diagnose IBS too?

Thanks for reading if you got this far- I just needed to get everything off my chest.

OP posts:
timeforfunfunfun · 18/08/2022 02:38

Jesus that sounds utterly horrific you poor thing

I don’t know much about it but there’s no chance you have crowns or an associated condition?

You have my sympathy because what you’ve described sounds truly awful

NiqueNique · 18/08/2022 03:47

It won’t help I know, but I hear you.

Flowers It’s shit (quite literally! Hopefully that’ll make you smile, but if not, I’m sorry!) and you’re entitled to be sick of it, I know it’s a really horrible thing to suffer with.

I’m afraid I can’t answer your questions. But I hope you get some helpful answers and I hope you’re able to find some relief/get some help with your symptoms.

dolphinsarentcommon · 18/08/2022 04:12

I really think you should ask your GP to refer you for a second opinion. It may 'only' be IBS to them but it's having a massive impact on your life and I imagine your mental well-being.

A sigmoidoscopy looks at the lower bowel only.. a colonoscopy goes higher btw

You need a gastroenterologist who will look at the bigger picture imo

I'm sorry OP. It must be awful for you.

Rowgtfc72 · 18/08/2022 04:13

Keep pushing your doc for every test going.
I take 1 loperamide every night at 9pm. Watch my dairy, gluten, sugar, alcohol..
Avoid my triggers garlic, onion, green veg, milk.
It's a viscious circle. The more you stress the more you go.
I was you. I've lead a relatively normal life now for the last year.
Do hassle your doc though. Explain your lack of quality of life. Thinking of you.

Viciouslybashed · 18/08/2022 04:22

I take imodium which i know is another name for loperamide. Its been goimg on for years now and it is exhausting in all the ways you mentioned. I know i cant eat breakfast if i want to get to work without an accident. It has however deffo got slightly better or maybe im more resigned to it. Ive not bothered dr for years as all they said was take imodium so i do. You have my utmost sympathy.

Pippa12 · 18/08/2022 05:25

I take a medication called alverine, my gp said it was ‘an old one’ but its made a massive difference to my IBS. I also exercise regularly, avoid garlic, spicy food and majority of takeaways. Stress is a trigger for me, during stressful periods I’ve used low dose anti depressants which helped with symptom control. Do you get reflux? I also take lansoprazole, as my gp thought the acid reflux and ibs maybe linked.

My bowel is not perfect, but I’m now 70% sure I’m going to have a accident free day.

Searchingforsunshine · 18/08/2022 05:58

Have you considered fasting for a few days to try to let your body recover?

Londonnight · 18/08/2022 06:14

Have you had a SehCat scan? I thought I had IBS for years following having my gall bladder removed. I was initially sent for colonoscopy due to have crohns in my family and my symptoms were very similar. These were clear, so next step was a SehCat scan.
This is under nuclear medicine. You swallow a pill, have a scan, then go back 7 days later for a second scan. This shows how bile travels through your body.
It showed I had bile acid malabsorption {BAD } where bile just goes straight through my body giving me almost constant diarrhoea.

I am now on medication for life, but most of my symptoms have gone and I can live a relatively normal life. Look up BAD UK on facebook, you will get lots of help and advice on there.

BerryBerryBerryBerry · 18/08/2022 06:32

I had IBS and incontinence for 8 years until I moved abroad the gastroenterology I saw said there's no such thing, just lazy medical care. I had various investigations and was found ro have a rorn diverticulitis, severe infection and 2 duodenal ulcers. After surgery and a course of PPIs the only thing I suffer from 10 years on is constipation from my HRT. Go private and see a proper gastroenterology doctor is my advice. I do know how awful it is, I had my rear windows blacked out so I could poo

Original poster
Washingupliquid · 18/08/2022 19:51

Thanks for all the nice comments 💕

I just feel like nothing I’d ever going to fix it and it’s so upsetting. I know someone asked about fasting- it helps it but as soon as I eat again it starts all over again so didn’t really achieve anything other than leaving me hangry. Thanks anyway for the suggestion though x

OP posts:
Blev2022 · 18/08/2022 20:04

I had bowel issues in the past turned out to be IBS. When I went for my sigmoidoscopy I'm sure the consultant mentioned taking a certain type of antidepressant to slow the bowel. I want to say amitriptyline but could be wrong. I never tried it though it cleared up (I was in a stressful period of life).

As a PP said, I have a friend with IBS who takes omeprazole and this helps. Best of luck with it OP wish I could be of more help

LuciferRising · 18/08/2022 20:04

It was over a decade ago but I also saw a rheumatologist for IBS when my weight started to drop. Not sure if that is in your post. I also had a colonoscopy.

Based purely on my experience, my IBS flared up when I quit being a vegetarian. I them went back to it after a decade or so and it has greatly improved.

Blev2022 · 18/08/2022 20:22

Blev2022 · 18/08/2022 20:04

I had bowel issues in the past turned out to be IBS. When I went for my sigmoidoscopy I'm sure the consultant mentioned taking a certain type of antidepressant to slow the bowel. I want to say amitriptyline but could be wrong. I never tried it though it cleared up (I was in a stressful period of life).

As a PP said, I have a friend with IBS who takes omeprazole and this helps. Best of luck with it OP wish I could be of more help

It's tricyclic antidepressants sorry I checked nice guidelines.

I'd be encouraged to check through them and if there's anything you havent tried that you think would help then tell your GP it's in nice guidelines

www.nice.org.uk/guidance/cg61/chapter/Recommendations#clinical-management-of-ibs

MunchMunch · 18/08/2022 20:35

Londonnight · 18/08/2022 06:14

Have you had a SehCat scan? I thought I had IBS for years following having my gall bladder removed. I was initially sent for colonoscopy due to have crohns in my family and my symptoms were very similar. These were clear, so next step was a SehCat scan.
This is under nuclear medicine. You swallow a pill, have a scan, then go back 7 days later for a second scan. This shows how bile travels through your body.
It showed I had bile acid malabsorption {BAD } where bile just goes straight through my body giving me almost constant diarrhoea.

I am now on medication for life, but most of my symptoms have gone and I can live a relatively normal life. Look up BAD UK on facebook, you will get lots of help and advice on there.

Agree it could be Bile Acid Malabsorption. I'm now in Colestrymine and it helps a lot.

According to GUTS uk, Bile Acid Malabsorption symptoms are very similar to IBS and a lot of sufferers are wrongly diagnosed with IBS. That could be the reason IBS medicine hasn't worked.

bellocchild · 18/08/2022 20:42

I had diarrhoeia IBS for years. I finally followed an online tip and used a pyruvate supplement, which helped a lot: Swansons Triple Pyruvate. It might not work at all, but it's worth a try. Took a few months.

MissSmila · 18/08/2022 20:49

Absolutely get checked out for Bile Acid Malabsorption. My IBS got much worse after I had my gall bladder out, and finally BAM was diagnosed - which is treatable.

mumof1879 · 18/08/2022 20:56

Have you been tested for coeliac disease?

GG1986 · 18/08/2022 21:02

As a previous poster said, I have also heard that amitriptyline can be used to help IBS, I am pregnant at the moment, but once baby is born I am asking to try this. I have had IBS since I was a child and I am so sick of it now. It controls my life, I shit myself today as knew I couldn't get back to a toilet in time, it's just awful isn't it!?

IdiotCreatures · 18/08/2022 21:05

Amitriptyline and codeine. Amitriptyline every day. Codeine when having a bad flare. I like the fact that codeine gives me a day off pooing. Usually poo more the next day but the break is a relief.

PaperMonster · 18/08/2022 21:12

I rarely get a flare up these days since going low carb. However, in my really bad days I had colonic irrigation and this really helped.

Jiminycricket10 · 19/08/2022 04:37

There are some great suggestions on a recent thread about this:
www.mumsnet.com/talk/am_i_being_unreasonable/4605993-how-do-people-with-ibs-cope-with-life

Jiminycricket10 · 19/08/2022 04:44

This reply has been withdrawn

This message has been withdrawn at the poster's request

Jiminycricket10 · 19/08/2022 04:46

BerryBerryBerryBerry · 18/08/2022 06:32

I had IBS and incontinence for 8 years until I moved abroad the gastroenterology I saw said there's no such thing, just lazy medical care. I had various investigations and was found ro have a rorn diverticulitis, severe infection and 2 duodenal ulcers. After surgery and a course of PPIs the only thing I suffer from 10 years on is constipation from my HRT. Go private and see a proper gastroenterology doctor is my advice. I do know how awful it is, I had my rear windows blacked out so I could poo

I’m tempted to agree with this.
Also been ‘dismissed’ by doctors, OP.
The problem is that lack of medical training around food leaves most doctors clueless (that’s the generous explanation, although there are most certainly elements of bias as this affects predominantly women).

Dangermouse80 · 19/08/2022 05:39

Amytriptline daily 50mg at night. I don't eat a lot. No breakfast just light lunch around midday and then a snack of cheese / biscuit late afternoon and dinner at 9.
It seems everything healthy flares the ibs. Occasionally have peas / sweetcorn or an apple. I completely stopped having any cereals or vegetables and the symptoms stopped within 2 weeks. I do take vitamin supplements / have fruit juice. I now can even have milky coffees which uses to be a trigger. I can drink fizzy drinks now but did have to completely remove these previously.

helogast · 19/08/2022 06:08

I would suggest seeing a good nutritionist, in my experience doctors use IBS as an umbrella term when they can't figure out what is going.

For example - have they tested for parasites, bacteria overgrowth etc. These are often things doctors don't look and you may need private testing