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

Oh good for her that's nice to hear she could get somethings back into her diet!

Have they checked for coeliac disease? Can be hard to diagnose and often mis-diagnosed as IBS.

OP I do second other posters saying get a full battery of tests as fingers crossed it will identify something. Just a caution though please don't put your hopes in them - I and all my relatives had full allergy tests, colonoscopy, endoscopy, biopsy, h pylori, celiac, and about every test you can think of and nothing ever showed anything. By all means push for these things but it's more a case of if you find out something its a bonus. But know that being very hard core with diet WILL in the meantime get you results.

Sorry for posting so much, it's just that I see me in you so many years ago and I remember how it was ruining my life.

My SIL has been suffering for yesrs..in a similar way to you...Eventually she qualified for a "biological treatment" where they basically change her gut bacteria..it has helped her hugly. After 3rd cycle of this treatment she is now in remission.
She is not in UK but another Europran country. No idea if you can get it on NHS.

Where do you live OP?
I promise this is relevant to my answer!

OP it sounds awful. Are you actually low in iron?

I only ask because if you are, it could be caused by coeliacs which stops you from absorbing it and you can become malnourished

It happened to me! My body cannot absorb iron no matter how high my iron pills dose is. But my tests came back negative from coeliacs too but thankfully I have a pushy consultant who's helping me sort it out. I'm malnourished but I'm also your standard size 8.

Mucus and greasy stools were one of thr things I noticed. And acidic feeling too. (TmI?)

Really hope you're OK. Sorry if I repeated some info but I haven't had time to RTFT but I didn't want to run either xx

Oddly, I found that amitriptyline and propranolol helped my tummy issues. But we're prescribed for other ailments

Have you any money to go private? If so look at the Gut Health Clinic on Instagram- Meghan Rossi who runs it is so passionate about these issues. They are dietitian's but I get the impression they’ll go beyond where a lot of NHS dieticians (I love the NHS but I feel things outside the norm are often not dealt with well) will stop and are involved in a lot of research.

Have you ever been checked for Lupus?

I know you've been seen by specialists but on the off chance they haven't tested for it, check for coeliac disease. I have it, and apparently 12% of people have it and it gives all these symptoms and more. I was in pain for over ten years before I got sorted, now I'm good as new, just from cutting out gluten. Coeliac disease also causes neurological disordered and repeat miscarriages, but very few people know as our health system is an elaborate joke.

I’m not surprised you’re swearing and upset. I was told for 20 plus years I had IBS and it got worse and worse.
Worst day ever was when I had to drive almost the entire length of the M1. I stopped at every service station to use the loo and at a couple had to sit in the car and then go back in again.
How I resolved it. I cut out everything except rice, boiled potato, vegetables, bananas and eggs. I lived on those 5 things for 6 weeks. I took a multi vitamin and a vitamin c tablet as supplements. If you eat meat you could probably substitute chicken for the eggs.
After 6 weeks I added in one food for a week. As soon as I ate gluten the IBS flared up. I now don’t eat bread, pasta, cakes, biscuits, crackers. I was tested for coeliacs - negative but I live as if I have coeliac and life is a lot easier.
It’s difficult to do the 6 week elimination but glad I did.

For me, it was sunflower oil. Can set it off in minutes. I haven't read the full thread but did you get intolerance testing done. Helped me a lot to work out which foods were causing problems.

Disclaimer- not medically trained. My friend was told for ages that she had IBS but it was ulcerative colitis and she had a lot of these symptoms. She ended up with one of the bags (I forget the name) after having her bowel removed. Have they checked for UC?

OP, you have my sympathy. Not all your symptoms are familiar, but I have ibs and my main problems are diarrhoea and pain. I have had flare ups worse than labour, it's not just a bit of tummy ache.

I tried all sorts of dietary changes, but that just added stress, which makes ibs worse. What helped me most was a set of hypnotherapy cds by Michael Mahoney. He's considered an expert in the field, this is his specialism. It's a 100 day course, and I found I improved a lot. Every so often I repeat part of the course again if things start to deteriorate, but the improvement is such a relief.

So sorry OP. If you haven’t had a colonoscopy, then you haven’t been investigated. IBS is a diagnosis of exclusion.

There are so many other possibilities - Crohns, diverticulitis and cancer for starters. My DH is an oncologist who has several patients in their teens and twenties - it’s not impossible for a young person (but it is very treatable).

My brother in law had to go private to be properly assessed, it turned out it was colitis.

@upsetandfedupandmiserable

I had very similar symptoms to you 7 years ago, grateful that my gp referred me to the gastro department and they did a colonoscopy. I’ve got Crohn’s and colitis, on the right medication very manageable diseases. The sleeping for 9 hours and being exhausted unfortunately is part of it. Chronic fatigue is a massive side effect and stress is a trigger.

Could you afford to have a colonoscopy done privately?

First of all I am really sorry you are going through this. It sounds terrible and is clearly affecting your life. Secondly, I really think you need to go private, if you can. Sometimes if they can’t find a solution the NHS will just give up basically but if you can be seen privately you will be seen fairly quickly although you may have to wait a little bit as everyone seems to be going private these days but also they will keep testing until they find what it is. You need someone to take your situation seriously and not just fob you off. You need to tell them what you have just told us and keep going until you get some answers. Write down symptoms, keep a diary and show it to gps. You may have already done this. Have you got anyone who can go with you to fight your cause as it were? Good luck…

There’s no way that’s just IBS. I’d be hounding like hell to see a specialist every damn day! Mucus in poo sounds like your GI tract is inflamed. Have you tried a coffee enema- you can pay private and they clear out everything. I know someone who had bowel issues and they found a piece of Lego lodged that he swallowed when he was little!

This is the level of elimination that worked for me, my version was plain chicken boiled rice and basic veg for 12 weeks...life changing. Took a long time to then try to slowly work in other stuff without major problems but I eventually managed to. The elimination diets often suggested IMO don't work for a lot of people as they just aren't basic enough to start with. OP I think this might work for you too, I know you said the usual elimination diets did nothing, they didn't work for me either. Unfortunately it's often needed to go a lot further to get results, but honestly I think you will get them. A caveat is I always took vitamins, mineral supps and low dose probiotics (nothing acidic like vit c tho).

Someone mentioned being tested for lupus which is interesting as I also got tested for that to see if it was a problem (a grandparent had it) but it wasn't that. All worth testing but it's so hard getting these tests, right? I personally think there's an as yet undiscovered digestive disorder that a lot of us have that currently falls under the IBS banner because there's simply no other explanation as of yet.

There is an IBS service at UCLH worth trying

www.uclh.nhs.uk/our-services/find-service/integrated-medicine/irritable-bowel-syndrome-service

I agree you need to be checked for Crohns / Ulcerative colitis. My mum had this, it's really tough. Sorry OP, I hope you get the help you need.

I’m so sorry OP. This sounds so awful.

I’ve had IBS since I was a teenager so I know how you feel.

However a lot of the symptoms you’re listing are not IBS symptoms and are concerning. They should have been more thoroughly investigated as they are not consistent with an IBS diagnosis. I was told by my doctor that black blood in stools is never IBS as IBS doesn’t cause gastrointestinal bleeding.

As others have said, you need to go private. Take out a loan if you have to. Research a specialist and make an appointment to see them - usually you can get one within a couple of days - and then they will refer you for all the tests. You will get an answer much more quickly and you will also be listened to in a way NHS GPs just don’t.

I find that when it comes to any chronic illness, GPs just want to tell you it’s stress and anxiety and push you out of the door. The severity of your symptoms is hugely concerning and you can’t go on living like this. Please pay the money and go to a private specialist.

So much good advice here, and apologies that I haven't read all of it. However, as someone who suffered from IBS for many years, one poster's comment stood out: turned a corner with it taking a constitutional homeopathic remedy

Now, I know that homeopathy is controversial, but this is exactly how my IBS was cured too, so it might be worth a look.

This is bollocks. Reminds me of when doctors tried to fob me off that my cystitis was in my head, when I just needed the right antibiotics. It's really not helpful and actually makes people feel even more distressed when they have an extremely debilitating physical illness.

You could have described my symptoms. I manage it by not eating after Wednesday tea time until Sunday teatime. Just plenty of sugary drinks.