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

These conditions are actually very hard to diagnose in many cases. It can be a long process.

Could anxiety play a part? I have suffered on and off from mild IBS. It is always much worse during spells of stress and anxiety.

For regular readers of this thread - I've had constant tum ache for 2/3 wks now. Not sharp, just THERE, like a football in my tum. Sigh. I think THIS episode was chips. Another food where tum says no.
I read what pp's have said about BAM which seems spot on for me, but I'm already on a statin - does it have to be that specific one?

(Sorry for hijacking, OP, while the thread is running, I want to get as much help & info as possible for us all!)

With the psoriasis, IBS and infrequent periods, you need to start looking into auto immune deficiencies. Endometriosis can wreak absolute havoc on your body and they believe now it's auto immune related. Have a look into it.

I'd eat my hat if this isn't Ulcerative Colitis or Crohns though.

I might get shot down for this, but have you tried sunbeds? I have psoriasis too and the sun or a sunbed really helps me. You can get light treatment on the NHS for it, although god only knows what you have to do or how long you would have to wait.

I do five to ten minutes in batches per month in the winter and just don't ever wear sunscreen the rest of the time and I genuinely do notice the benefit. It also massively helps me keep my energy levels and general well-being up during the long nights.

I've been doing that for a few years now and have had no patches at all. I have a related autoimmune disease too and it relieves my pain better than morphine.

I know you've had a million suggestions so don't feel under pressure to respond 🌹

If you can afford it, please refer yourself to a private consultant. That's what got me my colonoscopy.

Also look at something like Amitriptyline. For me that has been a massive help, without it the frequency is high and the control I have low. It's hell. May help you get on top of some of your symptoms so you can have a break from the sheer relentlessness of it.

For me dairy is a massive issue. The last few months I've been awful with watching my diet and its deteriorated a lot.

I now take a strong vitamin for women and a red clover tablet. Amitriptyline, lactase enzyme and a probiotic every night without fail. I have no alcohol and no caffeine. I think I need to look at gluten again, but for now I'm focusing on dairy.

I also do Pilates as the controlled breathing and strength work makes me feel good.

I really get it, my late teens, twenties and early thirties have been blighted by it and now in my early forties, I fair slightly better as I'm not working and have more control over how I live. This removes some of the psychological stress of trying to control my stomach to a timetable out of my hands.

I also know how much stress it can bring and how that worsens it. Don't underestimate the psychological pain it puts you in as well.

My hormones also play havoc with it. Interestingly though my most recent Dr said 'IBS is almost always diet' and that's never been said to me before. It was always as if I was thinking myself into it!

Sorry long post. So TLDR I get it, I'm so sorry for you and please pay to go private (if possible) as I don't feel they've sufficiently ruled out other conditions. You surely need a colonoscopy.

Hi OP. I don't know if you are still on this thread but the reason I asked where you lived is because your symptoms sound so similar to my brothers. He struggled his whole life and it turns out he had crohns. He reached out to a few crohns charities and one in particular has helped him massively. It's worth a Google. We are in Scotland. If you want more info let me know.

So sorry I’m so late catching up on messages. It’s been a rubbish few days.

im still getting the same symptoms. Today all I’ve eaten is bland rice and when I go to the toilet it’s still the exact same. It’s not the worst diarrhoea I’ve had, it’s probably the 6th type on the chart someone mentioned but there’s definitely still a layer of oil or something on the water. It’s clear and not bloody, but it’s like when you look at a puddle of petrol and can see the oil swirls on the surface.

I’ve read every single reply and have written down every single suggestion so I can try it. Thanks so much everyone for taking the time to help me. I feel like this is taking over my life, as ridiculous as that sounds- ALL I can think about is where is the nearest toilet and panicking in case I don’t make it in time. But it feels so lonely sometimes and I’d rather not tell anyone because it’s so personal, but it’s hard not to feel really alone and miserable.

with regards to the sigmoidoscopy I had, I’ll try and dig out the letters with the results but It definitely said sigmoidoscopy rather than colonoscopy and I’m certain it mentioned mucosa samples in the small bowel, which were thankfully clear.

i 100% cannot afford to go private unfortunately, and the GP can’t do anything else but the hospital won’t see me again because it’s just IBS so I won’t be able to get a colonoscopy.

thank you so much again for the suggestions everyone I really appreciate it, I’ll try everything I haven’t already tried x

Coeliac Disease can cause Dermatitis Herpatiformis, also Dishidryotic Eczema. They can mimic psoriasis.

True IBS is less likely than Coeliac disease in terms of the UK population. NHS advice is to rule out. CD by bloods and scope, before diagnosing IBS!

CD can also affect periods and fertility, energy levels and even cognition.

OP apologies if I missed it in the thread but have the doctors run anti-gliaden antibody tests as well as a biopsy?

I had IBS but absolutely nowhere near as bad as yours. Turning to a veggie diet (actually vegan plus eggs) has really helped but I had very mild symptoms compared to you. Ginger also helped and kinesiology helped a friend of mine. Your problems sound really severe though so I would really push for seeing a doctor again. Hope you're feeling better soon.

Download the nerva app

Thank you @upsetandfedupandmiserable I was wondering how you were getting on.
I was at the GP the other night.. poo sample dropped in the next morning, results tomorrow hopefully. It wasn't my GP, he asked if I'd ever been tested for coeliac.. nope, not as far as I remember..
I know JUST what you mean about the 'oil swirls'. Do you get kind of that 'not really here' feeling, too? Not dizzy, just not entirely present?

I'm came on to say the same, these sound very similar to my DH's symptoms with ulcerative colitis. He takes PPI, and when it's really bad steroids. He's cut out caffeine, tries not to eat too much rich food. Doesn't eat spicy food and doesn't drink very much, all of which helps. He has also recently started taking Symprove probiotics (seem to work v well for a lot of people), and takes Buscopan when having pain. Good luck OP, I really hope you get to the bottom of it and find things which help.

You’re entitled to a second opinion even on the NHS.

One thing you could do is find a consultant who does private and NHS work.
Make an appt to see them privately, and, if necessary you can be referred to their NHS practice for tests.

Fwiw - Ulcerative Colitis affects the colon and rectum with a continual zone of inflammation. Crohn’s affects any part of the GI tract from mouth to any, the inflammation is in parts, it’s not continuous.

A sigmoidoscopy only looks at rectum and lower bowel.

If you don’t ask you won’t get.

Hi OP, not sure if this is of any help but i just read this and it reminded me of this thread:
www.dailymail.co.uk/health/article-11300609/Got-IBS-statins-ibuprofen-acid-reflux-pills.html