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

Good advice but sadly for a majority of IBS sufferers (including me) coloniscopies and endoscopies usually show nothing. IBS is still so poorly understood. Still worth it in case it comes up with h pylori or something but don't put your hopes in it. Also OP someone said come off the pill but when I went on the pill (for peri) it made no difference to IBS one way or the other (it's transformed life on the peri side of things, though!).

Sorry to keep posting but IBS is a huge issue for me and @kateandme the idea that IBS is linked to stress is already extremely well known and often sadly used as a way to minimise the condition by many, which is extremely distressing (ironically) for the sufferer. Yes stress can make it worse but there are many other causes. For me, for example, all the women in our family have it so it is clearly genetic, but no-one can find the root cause of it. It isn't worse for me when I am stressed. It's just awful all the time, unless I manage my diet with an iron fist, which I do. And I have to because the older women in my family now have extreme health problems caused by this issue and the fact they didn't get really hardcore on managing and restricting their diet.

I was ‘diagnosed’ with IBS years ago. It ruined my life as I became absolutely and permanently paranoid I’d shit myself in public and that is what took me to the GP😔 Vicious bloody cycle of anxiety and stress. I tried all sorts- at one time I used to glue Altacite plus. No idea what that was… I think I had a pretty progressive gp who said look we can either treat your stomach or your anxiety etc and he put me on antidepressants. (Which at the start give you the most horrendous shits 😟) but actually I guess that’s what saved me. He asked me how I felt a month later and I realised I no longer cared whether I’d shit myself in public. I never did! It took away all that debilitating anxiety. I’d got agoraphobia and all sorts. The fear was permanently there.
I’m not saying IBS is all in the mind by any means but I feel there is a lot in it.

My friend is a doctor training in lifestyle medicine and involved in research. I had a really interesting conversation with her about all the emerging evidence around IBS and possible causes and treatment.
I am in absolutely no place to tell you what/if any of these will work but I will share the resources sent me away to read up on.

Books:
'The Diet Myth' by Tim Spector
'Clever guts diet' by Michael Moseley
The Glucose Goddess book

None of these will give you an overnight fix, but they do discuss gut health beyond the level at which the NHS aid working at, and it sounds like you're desperate, so might be worth thinking about.

The only think my gastro said when I was diagnosed was to buy super expensive non prescription probiotics 😞

Have your gallbladder and liver been checked? The oily stools indicate fat malabsorption, which can cause all the symptoms you're experiencing. There are a number of things that can cause fat malabsorption, and sadly only a small handful of treatments such as enzyme supplements and loperamide - I'm guessing you've tried those?

I feel so sorry for you, it sounds bloody awful

Have you been checked for bile acid malabsorption? {BAM} I had what I thought was ibs for years following my gall bladder removal, but it turned out to be BAM.
You will need a Sehcat scan to confirm. I take binders now and it has been a game changer, and mostly I am better now, still have days when I am in the toilet more than normal, but can cope with that.

OP dieticians are bound by what they are allowed to advise. Find yourself a gut expert nutritionist registered with BANT.

My aunt had almost identical problems. She worked with a nutritionist to find the problem.
She did a carnivore diet (literally meat and eggs only) for 12 weeks and then reintroduced other food.

As she reintroduced slowly they knew exactly what was setting her off. She’s been cured by removing those food and I don’t use the word cured lightly.

Going carnivore was like a complete reset for her system.

Please invest in some Contiplan wipes. It won’t help with your symptoms but they are a godsend for when you have persistent diarrhoea.

I had issues with my bowels for several weeks after surgery and I used one after every bowel movement. They soothe and leave a protective barrier on your skin as well as making sure you’re properly clean. I can’t imagine how sore you probably are.

Sorry you are going through this.

But I would also agree that you should at the very least have

• endoscope with h pylori and coeliac testing
• colonoscopy
• and Ca125 (if not already had) and USS abdomen

This sounds so, so difficult, OP. I’m thinking of you and hoping you get answers and proper treatment and relief.

@upsetandfedupandmiserable I feel awful for you! It’s a long shot but speak to a kinesiologist- they literally saved my DDs life and so many people I know go to my local one as he gets to the root of the problem and works from there up. My DD had horrendous headaches (I was convinced it was a tumour), awful heartburn, poos that were just mucus, bad wind, swollen tummy and they said it was coeliac disease, a year before the GP finally agrees to do a blood test which confirmed her levels were so high for gluten she was off the scale! I would honestly just give one a call and see what they say, they may not be able to help but it’s worth a try. I really hope things improve for you x

@Betahydroxybutyrate can she ever reintroduce those banned foods again? I never can so while I am kind of 'cured' it's not a cure, I just don't get symptoms but I'm only eating about 15% of what other people can eat on a permanent basis. I'd like a proper cure which would mean I could eat normally again! At the moment it's just management.

Honestly OP I really feel for you. Some IBS researchers think it could be an allergy that originates in the gut so foods that make you really sick don't show up in regular allergy tests (interesting to me as I had a full battery of allergy tests and got the all clear on everything). The only thing that works is genuinely hardcore food exclusion.

Interested to know of anyone that could reintroduce things as I never can but honestly OP please don't lose hope. If it helps, my skin, energy and weight and even how much younger I look after doing all this are all benefits as well as stopping the symptoms. And honestly people even doctors will tell you with confidence what is probably wrong, what you should do, etc, but we are all different. The one thing you can control is food so I'd throw yourself at that as a management tool.

I had this and it was Coeliac disease, getting diagnosed was the best thing ever and sorted me out. Take the test and see if you need the blood test…

www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/what-are-coeliac-disease-symptoms/check-your-symptoms/

@Softplayhooray some things are gone for life. She sees it as a prescription for health and if she deviates from that she pays a painful price.

Some other foods that caused a mild reaction she was able to reintroduce after another 12 weeks abstinence. It was hard work but worth it.

I get black sticky tar poo when I have a ibs flare up and, it kicks up my gastritis to much acid in the stomach was told to eat bananas and bread to make it more settled and it worked but took about a week, you need to find your trigger mine is corn and bread, few other bits.

this sounds awful but just drink water and eat gluten free for 1 week see what happens.

I would go private. Borrow the money if you can. Your health is a priority.

This sounds horrible, I'm really sorry you're going through this.

It's sounds incredibly like my friend's experience of Chrons disease. Please definitely insist on following that possibility up.

I have ulcerative colitis and a lot of the symptoms you have are extremely similar to mine when the colitis flares up.

Could you approach your doctor and basically be adamant you have IBD (crohns or colitis) and try and put pressure on them to rule that out, if you see what I mean? I developed UC in my twenties and there is evidence a lot of people develop it around then so it’s very plausible.

While UC cannot be cured diagnosis and treatment have helped me massively to reduce both the number and severity of the flare ups.

That’s rotten op. When you say you’ve tried everything in terms of dietary changes how long are you giving it before saying it’s not working? It’s needs to be weeks if not months to start seeing any change. That’s the only thing I could think of as I had similar and was surprised at how long it took to see changes.

And if it is UC dietary changes really won’t help much if at all, as the problem area is basically right by the rectum rather than further up the intestines. It’s getting prescribed the right medication that is vital.

Poor you. I would demand a colonoscopy. And keep demanding till you get it. Could be a variety of things.

My IBS at its worst was severe and left me unable to leave the house. Yours sounds more like IBD though?

If indeed it is IBS, gut targeted hypnotherapy changed my life after food elimination diets had little effect. I now use Michael Mahoney’s IBS 100 when I start to relapse a little. I recommend but unfortunately with IBS not everything works for everyone. As I say, yours really does sound like IBD or BAM though in which case I’m not sure my suggestion would work.

Ask your GP to get you tested/investigated for Diverticular disease and diverticulitis. I have IBS and diverticular disease which is a lot more painful than IBS.

I was going to suggest this too.

OP have a look at the Guts Uk website, they are a charity they may be able to advise you on what you can ask your GP.

i agrre with others in that you need a full GI work up inc endoscopes, scans, mri and bloods.
I would stress the tarry poo and the greasy poo as those can be from issues higher up or not even in the tract such as liver and pancreas.
im having some GI issues atm and while not on any scale as yours I am having tests (privately).
Also a good idea to take some of the above dietary advice.