I FUCKING hate my life

[upsetandfedupandmiserable]

If anyone can read this and has any advice I would be so so grateful

I’ve posted before but posting again with some updates in case anyone else is in a similar position

i have ibs and it’s fucking shit and I feel so, so alone with it. Nobody can fucking help. The GP (who is actually really helpful) can’t help and none of the medication they can prescribe makes a difference at all. Ive tried everything they can prescribe. They said they can’t do anything else for me apart from refer me to the gastro department at the hospital. Ive been there a few times, had a sigmoidoscopy (I was told it was to be a colonoscopy and only found out in the follow up letter it was a sigmoidoscopy) and have had countless blood tests and stool tests. All normal. The department at the hospital weren’t keen to even do the tests at all as they said it was obviously just IBS but my GP had referred me so many times that they said they would do it. Since everything was normal, they’ve discharged me and if my GP refers me again it gets rejected as ‘it’s just IBS and should be managed in the community’ they said there’s nothing else they can do. And the GP said there’s nothing they can do. I seriously don’t know what the fuck to do but I’m miserable with my life and it feels like nobody can help

lve already seen a dietician- they did fodmap and tried to find foods I was intolerant to and nothing made a difference so they discharged me and said it was beyond them and it didn’t work

it feels like everyone is saying it’s beyond them and nobody can actually help. This isn’t what my 20s are supposed to be like. I haven’t told any of my friends or family because I prefer to keep it private but it’s humiliating and the symptoms are awful.

-diarroeha (15+ times a day sometimes)
-cramps, sort of like contractions/ sickness cramps
-mucusy poo, sometimes it looks like I’ve blown my nose in it and it’s so gunky
-greasy stools, TMI but there’s always a filmy layer on the toilet water as if it’s like oil or something, it looks like an oil slick on a puddle
-awful wind
-bloating
-really, really noisy stomach
-extremely painful poos, as if it’s acidic or something. It seriously feels like I’m shitting battery acid and the burning is horrific (I don’t have piles or fissures and have been checked multiple times for them)

right now it’s really bad. I’ve had horrific wind, greasy bowel motions (not diarrhoea) and a horrible on/off sharp pain. Its felt like a stitch and gets worse when im walking. It’s either in the middle of my abdomen or to the side and not always in the same place. It comes and goes and I think it might be wind related. I’ve had it before when the IBS gets bad and it leaves me doubled over sometimes. I don’t know what’s worse though the pain or the contraction cramps

I went out for dinner with my friends last week- big mistake and even though I had something bland which I’ve had before without causing a flare up, this time it sent my IBS absolutely insane and I was pretty much on the toilet all night and all of the day after. I think that’s why I still feel shit right now

i had an episode of black poo (6 times within 24 hours) recently, it was like sticky tar and I went to the hospital for it as I was worried. My blood test came back that my red blood cells were low and the nurses seemed a bit worried and said I should stay to speak to consultant. When he came he basically said he didn’t know why I was there and it was just IBS and anaemia is common in young menstruating females, but I pointed out that I wasn’t on my period and I’ve never had anaemia before. He did an endoscopy and ultrasound but obviously wasn’t happy with it. It was all clear and I never found out why the poo was black. ive had gallstones ruled out with an ultrasound

I think they think I’m looking for some other answer other than IBS but I’m not. I believe them that it is IBS. But they said I need to learn to manage it. But how? Nothing helps. I’m having diarrhoea 15+ times a day and it’s burning so badly it hurts me to sit down. My life revolves around where the nearest toilet is. I’ve tried fodmap. I’ve tried eliminating every food group. I’ve tried probiotics. NOTHING helps

I hate my life so much and I feel so, so alone with it all. I don’t know why I’m even posting I’m just upset about it all and it’s so fucking unfair

I have your symptoms and I have gallstones, despite various attacks they are always trying to downplay it as IBS, I don't say that lightly as IBS is horrendous but as the symptoms are similar they are choosing that

OP PLEASE READ THIS!

Also prebiotic as opposed to probiotics are meant to help. Mine is the constipation ibs often referred to as ibs- c. I meant to say that too many wheat products in one day cause me a problem.

I can’t eat high fibre foods, they knock my digestive system into overdrive.
OP please ask your gp to consider bile fat malabsorption as a possible cause of your problem.
I suffered similar but not as bad as you for years, underwent various invasive procedures, tests, different medications etc until a routine blood test showed my Cholesterol was high. I was prescribed a statin and with a week or so I noticed my symptoms, bloating, cramps, frequent painful explosive bowel movements that ruled my life were lessening.
I was in the car one day when I realised I didn’t have the cramping knotting pain in my stomach. We got through a trip out without me having to seek out the nearest toilet. I’m not in near constant pain anymore, I no longer look pregnant.
Its been five or six years now, still have the odd flare up but nowhere near as bad as before. Contrary to popular opinion about a high fibre diet, I find high fibre foods send my gut into overdrive, the awful symptoms come back so tend to avoid it.
Vaseline is a good barrier for a sore bum and I’ve found Bepanthen nappy rash cream really helped when it was very bad.
I hope you get some answers soon op.

I lived thos for 15 years until a doctor decodes to test me for coeliac blood test confirmed rhen off for an endoscopy and yes Test book coeliac!

I have no idea why it was never even a thought before but everything makes sense!

Jesus sorry about the typo's!

Endometriosis- have you been cleared for it- I have it in my bowl. Hard to diagnose

Have you been tested for SIBO? Small Intestine Bacterial Overgrowth? A lot of your symptoms sound like that

Im 52, ive suffered with IBS my whole life since the age of around 3. Ive seen countless doctors, specialists, nutritionists, dieticians, even a kinesiologist. I was told I was intolerant to all sugars, tomatoes, smoked food, metals, peppers, potatoes, wheat, diary, lactose.....the list was endless. I have to say the best Ive ever felt is when I cut all these things out, mainly the sugar and dairy, but I lost a stone really quickly which I could ill afford. Eventually I got bores not having what made life enjoyable so I went back to it. I now take a great probiotic and thankfully everything seems a bit more under control ,maybe a few days a month rather than all the time.

If you get a chance, follow Tim Spector and The gut Experts on instagram. Tim Spector is heavily involved in the Zoe project which might be beneficial to you. The Gut Experts also talk perfect sense, you can also listen to either of them on Podcasts. Good luck. Feel free to PM me if you need any further info. I get you, IBS has blighted my life and stopped me living it to the full.

Op, a sigmoidoscopy only looks at the rectum and descending colon area as that is where most colon cancers are found. It doesn’t go as far as the small bowel for that you would need a small bowl MRI or like I had, a pill camera endoscopy.

I had crippling IBS for years - like you kept going back to GP in desperation - eventually a random GP explained to me the link between the brain and gut - and that for many people with IBS, the key to management of symptoms lies in psychological approach - not physical. It’s called ‘visceral sensitivity’ - essentially what’s happening is that because you’ve experienced such painful symptoms in the past, you begin to anticipate the next time, you become hypersensitive to any slight change in your bowel etc and begin to feel anxious about ‘how bad will it be THIS time’ and that increase in stress and anxiety then become self fulfilling and actually INCREASES the likelihood and severity of another attack. This then just reinforces your fears and anxiety and so it continues in a self sustaining cycle. I also learned that in the midst of my attacks, my body was actually going into shock and my brain panicking which again was just prolonging the attack and severity. It’s taken me a few years but I have learned to manage it much more successfully by simply understanding the link between my emotional state and my gut. I use mindfulness to help manage my stress and anxiety around my IBS - and have learned to recognise my likely triggers. For example, I know that if I’ve had a blazing row with someone important to me, I’m likely to experience IBS symptoms within 24/48hrs - doing mindfulness and other psychological skills to reduce that emotional intensity quickly can prevent an attack or reduce the severity. This new understanding has been life changing for me. As my GP said ‘when Drs say ‘it’s all in your head’, they don’t mean you’re making it up - they mean it’s being driven by the mind and causing a physiological result - and the key to successful management is also in the brain’. It was certainly the case for me and I think it’s something GPs don’t explain clearly or compassionately enough, so that people understand that they are not saying it’s your imagination - but that the research has shown that the severity and frequency of attacks has strong direct links to the brain and our emotional state - and that you can learn how to reverse that. You can read more about it here: aboutibs.org/treatment/psychological-treatments/

Hi 👋 I’m so sorry you’re dealing with this and at such a young age.

I have gastric issues myself but no where near like yours, however I found this product called Pearls Women’s Probiotics and its really really good for what your symptoms describe.

You can purchase this lifesaver on Amazon if you can’t find it at your local Chemist.

Best of luck to you ok 👍 You will survive this for sure.

Small bowelMRI!

I haven't rtft, so someone may have already suggested this.

There is an established link between ibs and mental health, especially with stress/anxiety.

A family member had crippling IBS and the dietitian suggested yoga and referred to yhis this study which indicates yoga can be as effective as fodmap:
pubmed.ncbi.nlm.nih.gov/29076171/

It's more yoga then most people would do in a week and the key to it is regularity and repetition.

My family member is now is remission of symptoms as long as they keep up the yoga.

As my username indicates, I am a yoga teacher, but the dietitian didn't know this when she spoke to the family member.

Best wishes - there will be something that can help I'm sure.

Took me 3 years of being misdiagnosed with IBS before I was finally correctly diagnosed with Crohns and required two immediate extensive surgeries due to the damage caused during those 3 years. Insist on endoscopy down and up - my blood tests have never once shown markers for crohns in 22 years and yet I’ve never been in remission

Following on from my previous post, don't just try random things, I did that and it often made my symptom worse (even dieticians encouraging me to eat certain foods which actually made my fructose malabsorption worse) I would recommend paying to see a private specialist to find out what exactly is wrong so you can have a plan tailored to you.

I made an account just to reply to this on the off chance it might be useful. I suffered from all of these symptoms minus the pain (abdominal discomfort yes but not as severe as you're describing) and I don't remember particular pain while going to the toilet.

It turned out to be SIBO and a 2 week course of an antibiotic called rifaximin cleared it up and 3 years later I haven't relapsed. Might be worth trying the test just in case as if it's SIBO the treatment is so simple and effective and gives you your life back.

The SIBO test involves drinking some kind of sugar solution and then blow into a test tube every 10 minutes or so for like 3 hours, then they check your breath for hydrogen. Anyway might be worth getting the test if you can, it would be great if it was SIBO since it can be treated so straightforwardedly.

Best of luck to you x

Same, I had to do fodmap for 3 months and then reintroduce slowly - to find that onions and garlic were a big factor in my flare ups.
after a life time of eating onions and garlic. One week won’t give it time to repare itself

I read about maltodextrin recently, I had never heard of it before but decided to try cutting it out as anything I ate with gravy seemed to react with me. I think it's helped.
It's annoying though as it's in so many things, even some vitamins, and annoyingly I bought some Yakult to try and help my IBS and it's in that too!

I take Imodium (loads the night before) for the poop and Wind Eze for the wind and de-stress as much as possible.

Sorry my other post probably wasn’t very clear- I was saying I didn’t just give up after a week. I did the food eliminations for months and tried fodmap for months and months and unfortunately it didn’t make a difference. I didn’t just give up straight away x

Thanks again for all the help, I’ve tried Imodium, mebeverine, loperamide, buscopan, and every other anti diarrhoeal/anti spasm/anti cramp drug I can get. Unfortunately none have made any difference at all and I didn’t just give up with them straight away either.

i totally agree that psychological symptoms can cause ibs but I honestly don’t feel like I’m particularly anxious or a worried personality- obviously when a flare up starts I get upset but I’m not particularly anxious and the flare ups definitely start from eating (anything, no particular trigger) rather than at times I’m anxious. Although I’ll give anything a go at this point so I’ll try some meditation or yoga to see if that helps

i should also have said, I’m not on any forms of contraception or pills or anything.

my health is absolutely fine apart from this, the only other thing I have is skin psoriasis (I didn’t diagnose it myself, I’ve seen a dermatologist) but that’s the only medication I’ve been using recently and it’s just a steroid cream

So what is your current diet including drinks?

So what do you think about trying a antihistamine op?

And do you remember when it started? Was it post a tummy bug, gastric flu? Or did it come on slowly?