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

What is your diet like OP? Day to day? If you list it one of us might spot something.

IME medics aren’t interested in diet (which baffles me - they really should be) and a dietician will have a set of things to try like FODMAP and exclusions but might not look at the whole picture eg inflammation.

I think I would try if at all possible to get a private appointment with a specialist. If you found the root cause of this it could turn your life around.

Reduce your diet to meat, fish and eggs for a month.

There are many accounts of IBS being cleared up this way.

Give it a try, if it works, you should see results fast.

What is your weight like? Exercise?

If you google Don Tolman he is a very good holistic doctor. He has a face book page with a WhatsApp number. I've messaged him before and he does private consultations. He's based in America, but travels all over the world. He's written a few books regarding healing your illnesses with certain foods. His advice helped me heal an overactive thyroid. When doctors said nothing else could be done, it was medicine for life with a possible removal. I now don't take any meds and my thyroid is perfect now. Honestly I would contact him. He's a really nice man.

I'm a fan of major elimination but medically speaking, high fat even good fat can be a huge issue for some IBS sufferers and the OP sounds like she already has a symptom of inability to absorb fat, so the fish in larger quantities could be a huge problem for her. Eggs set off my IBS as well. And these three things alone don't have enough carbs, she could start suffering issues associated with low vitamins and minerals (although supplements help there).

I'm so sorry to read this, it sounds like you're having an incredibly hard time. Blood in your stools and extreme fatigue are both medical red flags and should be taken seriously, and properly investigated, so please do keep pushing for investigation. If there's any way you can afford a private appointment, I would really urge you to do that. I know you've said you're a private person and I totally get that, but is there even one person (friend/family) you could confide in? Having some support in real life could really make a difference...someone to have a good cry/offload to and someone to help advocate for you with the medical professionals. I hate to think of anyone going through this alone...

I am sorry you are going through this OP, I totally understand.
As someone who has had IBS for 24 years, which has truly ruined my life I can say that sadly, unless you make a huge fuss, you won’t get far on the NHS. I have felt completely dismissed as an IBS patient.
I was getting nowhere with the few, 10 minute, unhelpful, NHS gastroenterology appointments.
I paid £200 to see a gastro at my local private hospital. She put me back on her NHS waiting list and I had a gastroscope, a colonoscopy, scans and a pill camera endoscopy.
I am also waiting for a SeHCAT scan to check for bile acid malabsorption (which your symptoms sound very much like it may be a possibility).
I can’t afford private healthcare but those couple of £200 consultations were definitely worth it, if you can I would very much advise you see someone privately (they should be able to put you back on a NHS list).
I hope you get somewhere soon, please push at it.
I first developed symptoms at 25 and wish I had gotten a grip of it in the early days as it has truly taken over my life.
Also ask for a SIBO test. Years ago most of the gastros I saw said it didn’t exist but there is now growing evidence that many IBS patients actually have this (I am waiting to do a test on the NHS). Take a look at Dr Mark Pimentel on YT, he is an expert on SIBO.
Good luck op, I hope you feel better soon x

Again sorry for posting on this thread so much! But there are a lot of secondary issues you probably currently have that muddy the waters like vitamin and mineral deficiencies that might cause real fatigue, low mood, etc., and damage to your gut that will have caused malabsorption. That's what makes working out triggers so awfully hard. But if you go on a brutal elimination diet (3-6 basic foods, literally) and decent vitamins, minerals, etc, after a few weeks the secondary symptoms will start to improve too and it can start to get a little bit easier to start understanding things.

Sorry, I’ve just re-read your post and have seen the bit about dark poo and bleeding. You definitely need to push at that, that isn’t a normal IBS symptom so should be investigated. Honestly, a private consultation would be best if the NHS isn’t taking you seriously, which is so typical.

Sorry, it’s me again (I just hate knowing people are suffering like me, guts issues are bloody awful). Do you take Imodium at all? Has it helped lessen the diarrhoea espisodes?

And , if they rule everything out and it is IBS ask for Amitriptyline or Nortriptyline. I’ve just started taking Nortriptyline. They prescribe it at a low dose (10mg) but it helps slow down the gut, one of the side effects is constipation but I’d take that over diarrhoea any day.

I'm so sorry OP. I've had IBS on and off for years (nothing as bad as your symptoms though) and flare ups just make me want to crawl into bed and hide for days. I hope you get more luck down the medical route but in the short term have you tried a massage gun to help with cramps, bloating and gas? It helps me, I couldn't be without it now.

I'm so sorry OP - it sounds a nightmare. When I saw a Gasto his comment was 'there's more we don't understand about the gut and bowel, then we do. Over the next decades I expect new conditions to be recognised'. Not helpful in sorting out my issues, but I felt better talking to someone who was at least accepting the lack of understanding.

First off grab a pad of paper and write out each condition people have suggested on this thread. And methodically go through them and get tested for each one. My cousin has Colitis and it does sound similar.

In terms of 'self help', I found gluten bad for me - bloating, pain, etc but I kept a meticulous food diary (including spices) to id what made things worse. Undiagnosed allergies can cause havoc with your digestion. You might want to ask for a referral for that too.

Loads of water, pre and probiotics and a really mixed diet with lots of veg (I actually find it hard to do...so easy to live on carbs and meat).

You'd think they'd be doing everything possible, rather than one thing then dismiss as IBS, but sadly that not how it works.

You must be exhausted.

I haven't read all the replies so sorry if someone has suggested it but have you tried slippery elm bark powder?
I use it for my dog. You cook it and it turns into a slime which coats the digestive tract. It is basically replacing the mucas you have lost. I give it to her half an hour before she eats. Her poos are a joy to behold if I keep her on this!
A quick check on google shows me you can get a human version of it. Might be worth a try.

She also has clay and mud type products. I think they work in much the same way as a facepack does and absorbs the toxins in your gut. You can get human ones of these too.

Finally, she has seaweed. It's called Stoolrite and helps with digestion. As far as I can tell, it's just seaweed. Don't go using Stoolrite obviously but maybe try a seaweed supplement.

I think you need to keep pushing with your GP or go private but in the meantime the above might help. I didn't find the vets much use to be honest. Tried an elimination diet but didn't find anything. She is affected by stress but has ibs which the vet thinks was triggered after she got terrible food poisoning from scavenging.

I used to have terrible IBS and my drs in the uk just gave me tablets for the symptoms and dieticians didn't work. I moved to Germany and randomly found a gp who was very interested in bowel issues. She sent me for tests and found out I had too much Candida in my gut, and also that I have a Fructose malabsorption called SIBO. She put me on a no sugar diet for a few months with special drops to rebalance my gut bacteria and I also have to avoid high fructose foods like pears, bananas, beans etc. I haven't had any IBS symptoms since then, two years ago and it has changed my life! It's quite amazing given that my NHS Dr said I just needed to live with it.

I have no idea where you would go for this kind of test in the UK, but it must be possible. If not, could you travel and pay? I'd be happy to give you the name of the doctor who helped me but not sure how it works if you are not living in Germany.

I know how utterly debilitating IBS can be so I wish you all the best in finding out what actually is the problem.

Fecal matter transfer? You need urgent help. That's ridiculous.

I'd suggest getting on Facebook and finding some support groups on there. It sounds crazy but my Mum was diagnosed with Stage 4 cancer and I have a chronic condition and i've learnt more about how to handle the symptoms and side-effects from both our conditions on there - especially from people in USA going through the same things - as their medicine is LIGHT-YEARS ahead of us. Of course watch out for the crazy people - but there is some seriously useful stuff on there.

The other thing is to start googling and researching - especially on Pubmed - it's a database full of medical research papers. You're going to have to become your own doctor because the NHS just couldn't give a shit anymore about you. Sorry - it's not the NHS's fault - but it's been so broken by the Tories, that's where we are.

When did you symptoms start? Was there a first episode or did it come on gradually.

Also, again, USA has much better testing - so you may have tested under UK NHS tests as negative for Crohn's or other such diseases but in the USA they have more advanced testing which may pick something up. I recently used a test service for something for me.

I'd suggest you need a full panel of your microbiota to find out what's going on in your gut. www.gdx.net/product/gi-effects-comprehensive-stool-test

Also check out what trials are going here in the UK for IBS and email the people directly. You can find details of the people at the bottom of each trial.

You can search by country and various other filters clinicaltrials.gov/

I am so sorry, this sounds horrendous. So the sigmoidoscopy showed nothing but with this level of symptoms and nothing helping they would normally then do a full colonoscopy.

Have you had your calprotectin checked? That is important. I had normal blood tests but was very ill and my calprotectin was over 2000 (normal is under 50) I have ulcerative colitis. This is a good measure of inflammation in the gut.

it sounds like more than IBS for sure, but check out thetummywhisperer she has some great advice on the gut brain link and her hypnotherapy audio has been a huge help to my daughter.

I really hope you find some answers but please keep pushing. Maybe try a different hospital if you can.

This is good advice also. Definitely need to check fructose malabsorption.

Another vote here for getting checked for Bile Malabsorption- if it is that it’s a simple fix of taking bile acid sequestrant (cholestyramine (sp?!)) every day. I’ve met a doctor who thought they had Ibs for years and it turned out to be this!!

This is horrendous and I completely feel for you. The term is completely misused. It’s not really a a diagnosis but more a term describing a collection of different conditions. Finding out which yours is may be very very hard. Have you heard of EGID? Give it a google. I think it sounds as if you may need intravenous feeding for a while. Fodmap is worth pursuing but I think your body is in peak inflammation and everything will set it off. Do you have joint pain?

It does sound more like IBD than IBS so I don’t know if it’s just extreme IBS or whether you might be one of those people who take a long time to get diagnosed. A sigmoidoscopy is only the lower part of the bowel so if the problem is further up it could arguably have been missed.

I had IBS for years and cleared it up by changing my diet, acupuncture, herbs and probiotics. The conventional treatments don’t do much. Buscopan was good for cramps but that was about it.

Have you tried eating very gentle bland foods for a bit to calm it down? When mine was bad I would eat homemade vegetable soups and plain rice, with a bit of plain grilled chicken or fish until the symptoms eased.

But you have to figure out what is triggering your flares.

I have ibs and found the NHS dietician to be useless. I kept my own food diary with symptoms. Took a while and is boring but after a while realised that my trigger was too much of a particular food in one day plus a lactose intolerance. Not saying yours is the same but it might help to focus on finding your trigger(s) as a start point. There's loads of threads on here on ibs and related conditions and ibs groups on facebook. There's all sorts of combinations of diet and or medication that people say works for them on there.
It's rubbish having to watch what you eat but once you start feeling better it doesn't seem so bad. It's a really common condition but obviously an awkward one to discuss.
Its difficult because the solution using diet and sometimes medication is very tailored to the individual.
Maybe see if there's a gp at your practice that specialises in this? Really feel for you and hope you get the right support soon. Don't give up and keep pushing for some NHS help. Read up on it too.

Do you have a Salicylate Intolerance? I had IBS for a number of years and it was not made any easier by a fibroid, which I discovered can cause an issue too, namely that everything around it gets a little squashed. However, by chance, discovered I am Salicylate Intolerant and that's made a big difference to me, as it is about reducing the amount of exposure to substances that are not food but high in salicylate and just thinking about foods high in salicylate in my diet and not overloading my body with the substance. This is an intolerance often missed and diagnosed for me by an Allergy Specialist at Southampton Hospital. Worth a try and easy to find out about on the web and you will note that many of the symptoms are those you have mentioned.

Btw FODMAP didn’t work for me because I was fine with plenty of the fruit and veg on the list, but not ok with with some things they allow like hard cheese, spelt, artificial sweeteners. And there are other foods not listed that caused me problems. So you have to figure out your own personalised diet.

That said, when your GI tract is irritated it can react to anything.

my hubby is similar,he changed to goats milk it helps,no spicy food at all.still has bad days, but really watch you eat it helps.plain food is boring but if it helps the tummy it is worth it, does not drink much ,this seems to set tummy off beer etc, try a drink of flat coke slowly this aids tummy on a bad day,