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

To suppress your bodies response to whatever is aggravating it?

Codeine would bung you up but I know that’s not a good treatment

Have you tried celery juice? It sounds crazy but my DH had similar to you & since having celery juice every day it seems to have sorted out his problems & we are talking severe, blood in stools, multiple colonoscopy’s where everything was normal etc. please be aware that the first week or so it can seem like the celery juice is making it worse, but it isn’t. It’s clearing the crap out so to speak. Please just try it for a month & see if it helps. For more info check out the book celery juice by the Medical Medium. Give it a try, you’ve nothing to lose! X

As you had blood in the stool, unless it's from the soreness or haemorrhoids, book an urgent appointment to the GP again. Could they refer you to a different hospital? You are entitled to ask for a 2nd opinion and it might be good to research alternate specialists who may be more sympathetic.
As you are taking the pill, you don't have proper periods just the light hormonal bleeds, so that's not a reason for low iron.
Have you done a trial without the pill? Obviously great you are protecting yourself from unintended pregnancy, but if it was me, would also want to rule that out.
It seems like you have ruled out any food triggers, but are there others, like social triggers you identified, as you mentioned the meal out?
The Curable app explores chronic conditions from different angles, with cutting edge information about neural pathways, recovery stories, as well as other resources like writing exercises, meditations. I found it good to take back control over the experience of my condition and it's surprising how my symptoms which have a physical/scan diagnosis could still be improved 90% without medication.
It's not a case of "just" IBS as obviously it's having a big impact on your life, so wouldn't diminish how you are feeling right now.

Sorry I didn’t mean to ignore this! I’m trying to reply to comments but I’m trying not to accidentally miss any. I’ve been taking antihistamines for hayfever anyway but just over the counter ones, I’ll ask at the pharmacy if I can buy anything stronger to try. I’ll try anything at this point!

Thank you so much for the help, I’m not on the pill though I don’t take any forms of contraception at all, my periods are just naturally like this, I’ll check out the app thank you so much for the suggestion x

Op

ate you overweight?
diet like generally?
exercise?

Right now for drinks I only really drink water- I don’t drink soft drinks or caffeine or tea or coffee at the moment because I’m trying to be healthier for the sake of my teeth (I used to drink coffee but that didn’t really make it any worse strangely, when I thought caffeine would)

No I’m closer to underweight than overweight- not from this problem though, my bmi has always been around 20 ish.

for diet I try to avoid fatty, oily and greasy foods. I usually eat bland food and don’t eat a lot of meat, and when I do it’s usually white meat. Tbh I’ve found that whatever I eat things get worse anyway so i may aswell eat donuts and pizza and whatever I want (I don’t usually though), whether I eat that or bland ‘safe’ foods the outcome will be the same

i exercise a lot but not too much, I play sports and am generally in good health/fitness x

I haven't read all the threads but I did read about the anal discomfort. You need to moisturize this area. Try a balm with tea tree oil/emu oil/ coconut oil and massage in well before and after an episode. This should protect against the most stingy episodes. Germaloids does work to deaden the pain but I also find it dries the area.

just in case it makes any difference at all, I’ve found that when the ibs flares up, my psoriasis is bad too. I don’t know if that’s just because I’m feeling miserable and noticing it more but my skin feels a lot worse at the same time

Thank you very much! I’ve tried coconut oil already but never tea tree or emu oil so I’ll give that a go too!

What are the mainstays of your diet?

In that case it could be autoimmune. Psoriasis with IBD is fairly common and they may share the same inflammatory pathways.

Black tarry stools is not part of IBS and it sounds to me as if the investigations didn’t look far enough up your GI tract. Blood that is black comes from further up.

I would go back and ask for a second opinion and ask for a colonoscopy.

Sorry to jump on this thread but I’ve had IBS for 24 years and can tick off all the boxes for SIBO. I’ve got the test to do but worried the lactulose solution will give me bad diarrhoea, did you get any reactions from the solution?
It heartening to learn the Rifaximin has helped you, I’ve been put off as I’ve read it usually only helps whilst the patient is taking the antibiotic but your reply has given me hope.

Hi @upsetandfedupandmiserable
My best friend had these symptoms of "irritable bowel" for many many years. It has ruined her life basically and prevented her doing lots of things she wanted to do. It's truly awful.
However, and the reason I put "irritable bowel" in quotes, was that eventually, about 5 years ago, after years of torture, she was investigated for and diagnosed with endometriosis.
Have you been tested for this? Irritable bowel and endometriosis can be linked and can also be mistaken for one another. Women with endometriosis are twice as likely to have IBS as women without it.
It's a really nasty thing.

My friend has now had surgery - included a hysterectomy - and also removal of endometrial tissue from the bowel. Things have improved but she still has a lot of issues.

This. I had all those symptoms and they were fucking up my life in precisely the ways you've described. I paid (through my functional medicine GP) to get my gut biome analysed. It came up with hugely high amounts of bile acid as the main finding. It's been treated by supplements and rebalancing, and once we had the causes, it was put right in a surprisingly short period. I control it by functional medicine. My FM doctor is fully qualified and is, in another life, a hospital geriatric registrar. She is a member of the Institute for Functional Medicine. This last is important. There are snake oil salesmen under the FM umbrella.
It's expensive and I am lucky to be able to (just) afford it. As a result I buy very few things for myself because being healthy and having a balanced and comfortable gut is worth every penny I can spare. If there is any possible way you can go down this route I would urge you to do it.

It was a few years ago but I don’t recall any adverse effect from drinking the lactulose, on the other hand I was having frequent loose stools and bloating all the time anyway so I wouldn’t have noticed a difference!

The rifaximin itself does give you really bad diarrhoea while you are taking it. My doctor warned me of this and I can’t remember the explanation but it’s part of the way the antibiotic works. I think I took it for 2 weeks and the bad diarrhoea part lasted a few days. Then it started to settle down and it was a few weeks later when I realised I was pooing only once a day and normal poo not horrible loose stools! 3ish years later and everything is still normal - I think there is quite a high relapse rate though so I’m always wondering if it will come back (don’t know what caused it in the first place which doesn’t help). But believe if it recurs you just do another course of rifaximin.

Only downside is I don’t think the nhs prescribes rifaximin for SIBO or at least didn’t at the time so have to pay privately and it’s quite expensive, think it was about £400 for the course. But it was totally worth it to not be bloated all the time and pooing 8 times a day.

I've not read the full thread but my initial thought was also perhaps endometriosis?

OP this sounds awful

Can I ask whether eating triggers your symptoms soon after (it doesn't matter what)? And whether passing wind or going to the toilet eases pain? Do you ever get woken in the night by needing the toilet or get caught short out of desperation?

There is some quite good research on hypnotherapy for IBS. It might be worth doing a Google deep dive on it.

OP have you been tested for Celiac disease? All the symptoms you’re having I had.

Have you had a calprotectin stool test? Your symptoms remind me of Crohns. Sounds more like IBD than IBS.

This thread is just a long line of excuses for your horrendous NHS. It's just cruel. Private is the only way to go, you must have proper investigations.

I honestly thought my IBS wasn’t stress/anxiety related and I’m such a laid back person I didn’t think anything mindfulness would help but I was desperate so tried the hypnotherapy and was pleasantly surprised.