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

I'm so sorry. Going through very similar and I know how awful it is. There was a thread on here the other week and someone mentioned histamine intolerance. Go have a read about it. I will find a link to the thread and post it.
I've started taking an anti histamine every day. While things aren't perfect they are definitely improved. Maybe worth a try. Feel free to dm me .

www.mumsnet.com/talk/menopause/4637152-awful-digestive-issues-could-peri-cause-this?page=2&reply=120290808

It’s not going to be popular but this does sound like a vicious cycle between your gut brain axis. And often folks with ibs eventually find it has so much more to do with stress and anxiety than anything else.and even the conformation bias of foods if they feel it will be a good the symptoms come if they stop the food tada but soon realise when it comes back it can’t have actually been the food.
a bad day.stress.anxiety it’s the main thing I hear again and again the real reason behind ibs.
people won’t believe it.they won’t think worries or mental health can be linked to physical symptoms but it is.it really is.
meditation.mindfulness can be huge helps.
getting mood under control.
the more you worry about this sadly the more it will continue.

Could you try a homeopath? Some complimentary medicine? You have nothing to loose.

I thought I was going to die from the pain after my last bad attack which prompted me to go back to basics. I used the monash fodmap system and cut absolutely everything out that it said was a trigger. I can't eat broccoli cabbage sprouts beans garlic lentils onion cauli amongst other stuff, discovered my body hates gluten and its a trigger, and I've cut out dairy milk and gone onto almond. The effect has been astonishing. It's as if I have a normal bowel.

You have to be very very strict and you will find you need to cook things from scratch as my stomach can't tolerate reheated stuff and most of premade meals have either onion garlic and dairy milk.

As previously mentioned it is a case of sticking to it.

Ibs can really ruin everything and I’m so sorry.it’s not seen as serious.and even when sympathetic you see a slight “really” to it.
slowly sipping hot water.
massaging the tummy in circles.starting from the diaphragm down.
try lying on your back with knees to one side
learn belly breathing
gently rocking back and forth and sometimes doing so on the knees.
getting someone you love to rub your bacon just sit and stroke your head!

nothing works consistently but the breathing and stress management for me.
but even that on the bad days it feels like you could die from the pressure against your torso! So of course you stress.
Arguments can start it.fear.anything.you even no when you’ve had a bad day before your head does because the belly starts to go.
your not alone op.

I forgot, no fizzy drinks, no caffeine.

You're right. It's a short sighted, and frankly, shitty way of looking at things.

People know perfectly well when they have stress related tummy issues and when they have chronic uncontrollable diarrhoea.

I've spent the last two years with chronic D&V every single day and if I hear one more person try and fob it off as stress, I'm going to fucking scream.

I know this sounds like a long shot. Are you on the contraceptive pill OP? Even the mini pill?

I' m so sorry you are going through this. Your frustration and despair are clear. I can relate because I had severe lactose intolerance in my teens to late 30's. I mean shitting my pants while driving in rush hour traffic severe. I get it.

all I can suggest is a full elimination diet where you stop eating all possible allergens including alcohol for 1-2 weeks then introduce only one item at a time per week. If you get a reaction you start again but do not consume the food you had a reaction to. Don't try those foods again for a very long time. My food intolerances were f-i g horrible! Over the years it has improved but I' still not great with milk products, even if lactose free. I have been to emerg 3x with anaphylactic reaction to food. I get it. It sucks when food is your enemy. Get a good gastroenterologist.

Check out www.evienutrition.co.uk/. A friend of mine had terrible IBS and she sorted it for them. Gut health is her thing...

This might sound a little bit odd, but have you been tested for Cystic Fibrosis OP? The digestive symptoms sound similar and it’s entirely possible to not be diagnosed until well into adulthood, especially if it isn’t in the family. I ask because it recently happened to someone in my family, it was written off as IBS for years and it was only when they were being investigated for something completely unrelated that a doctor asked if they’d ever been tested. Because it wasn’t in the family and the person was well into adulthood and had no chest symptoms nobody else had thought to check for it.

So sorry to hear this. My sister had terrible IBS in her twenties and was passed around different hospitals. She eventually ended up seeing a highly reputable consultant at St Mark's hospital (part of Northwick Park hospital in NW London). The hospital specialises in bowel issues. Crohns and colitis were ruled out. The consultant was of the view that her IBS was largely driven by anxiety and that it was a vicious cycle. She was prescribed a low dose of an antidepressant (sorry can't remember which) for pain relief (apparently some antidepressants are good for pain relief...) and she was pretty much cured within 6 weeks of taking it after her body adjusted to it. Appreciate not everyone would necessarily want to start taking antidepressants but it really did help her. Her symptoms were a bit different though in that she did not particularly have diarrhoea. Her worst symptom was the agonising pain (sounds like you have that too). She hated her life too and felt like the pain dictated her whole life. She had to quit work for a few months too to ease the pressure. Hope you get the help you need.

You need a full colonoscopy.
in the mean time take a really, really good probiotic - three times a day. And Yakut. No caffeine , no alcohol , no fatty foods, no processed foods, no fried foods.
lots of veggies and fruit
drink lots of water (you’ll likely be dehydrated from going 15 times a day)
gentle yoga when you feel you can and rest.

I feel so sorry for you. Have you had a colonoscopy? I had very similar symptoms for 18 months, always needed to near a toilet, so sore at times that i could hardly sit down! I had a colonscopy, but during the procedure the Dr had to abandon it when it was 70% complete due to the pain i was in ( the painkillers did not work on me, but thats another thread). But the next day, I kid you not, the symptons stopped, they literally disapoeared OVERNIGHT. A friend ( a nurse) said my bowl may have been twisted and the colonoscopy may have undone the "Kink". I don't know what happened, all I know is I've never suffered since, my awful symptoms literally stopped the next day and have never returned.

Sorry to hear this OP but I thought I’d tell you about a few things that helped me when doctors could not do anything. Come off the contraceptive pill if you are on it. Find a good registered homeopath (homeopathy did more than anything else to fix the problem—I note a previous poster had the same experience). And intermittent fasting—for me, I eat within an 8 hour period and don’t have breakfast, just drink hot water. Also avoid sugar like the plague.

This is awful OP. Can you afford to pay for a private consultation? I have a pancreas disease and it took me over 5yrs to get a proper diagnosis so I really feel for you. Nothing worse than no-one able to work out what’s wrong and make you feel like you’re making it up or exaggerating. I found the best appointments were the ones I paid for at Harley Street. It was £250 for the first appointment then £150 subsequent. Any treatment I had on the NHS. Explain at first appointment you’re desperate, can’t really afford private but are desperate to get answers. Good luck

What’s your B12 blood test level. That can cause exhaustion

the slimy poos are gluten related for me.

As much as it pains me have you tried a few private appointments for further investigation? I had to do that with a fertility related diagnosis for my husband as NHS wait times were crazy as its npt life and death. I had mild gastro/reflux issues for a year and was so so miserable at times because the sickness just took the pleasure out of everything, so I know a little of how you feel. Mine was cured with diet change and a few mo the of omeprazole but I hope you get your answers as its not right to live with your pain and anxiety, there's gotto be more to it and more tests they can do!

My dad has stomach and bathroom issues. Have you looked into diverticulitis?

I really hope this goes away for you OP xx

Hi,

I have no knowledge of this but just wanted to say that it's perfectly reasonable for you to be miserable right now. And it probably seems a bit hopeless.

I can't advise on your gut, but is there someone in your life you could open up to, at least a bit? You can give as little or as much detail is you choose. It sounds really isolating and stressful at the moment.

Even saying something like 'I'm really sick with a gastro issue at the moment, the Dr's are trying to work out what it is, but it means I can't really eat and am on the loo every 5 seconds. It's really painful and I'm knackered. Are you free for a video call this evening, it would really help me take my mind off things?'

I am certain there are people in your life that care and would happily support you.

Its like having a baby: If anyone offers to vacuume or do laundry for you, let them!!

I'm so sorry OP. I also have IBS that started in my 20s so really sympathise. I found the constant loud rumbly stomach and gas noises super embarassing. I did figure it out though and now in my 30s forget I have IBS so there is hope!

I started taking bio kult multi formula probiotic. 2 a day at first... it's expensive but super worth it. I eventually dropped to 1 a day after getting my IBS triggers under control. If you can't afford this brand just find a really good probiotic. You might need to try a few different ones to see what works for you. I also took 1 a day L Glutamin.

Secondly I started to identify my triggers. Start looking at the most likely culprits (anything hard to digest lactose, gluten, fructose). Try switch your milk to lacto free. After eating a meal how do you feel several hours later? What is it you last ate when you feel particularly bad? Keep questioning what you ate and cut things out to experiment and see what does and doesn't digest well.

Eat some basic food that is good for digestion like porridge for breakfast to start the day off well (with lacto free milk or oat milk - not soya as soya is hard to digest)

Another tip. Don't eat 2 hours before sleeping. Your body digests slower when you sleep and it will build up more gas. This means in the morning you should have less gas.

Good luck OP you can do this.

OP I am just like you and you have my full bloody sympathy. I even think IBS isn't a helpful term as it just describes a collection of symptoms with no actual cause.

I can tell you what I do, but I know we are all different (I had all the tests, saw everyone I could, no-one could help really so I managed it myself). But hopefully some of this might help. I went from having almost a cookie cutter version of what you have now to virtually symptom free. It's v restrictive but it's life changing for me:

Vitamins and mineral supplements, omega oils, probiotics, every day
V low alcohol, v low sugar, v low salt, low bad fat
No wheat, corn, oats, rye, spelt
No dairy incl no dairy free products as they might still have milk protein
Lots of water
Exercise
Small meals throughout the day, no big ones

This is permanent for me and yes restrictive and would drive a lot of people mad but for the unbelievable change in life quality it is 100% worth it!! Also my general check ups at the doc are now resoundingly great as my diet is so bloody healthy.

Btw my physio also said recently it might be related to structural issues (who knows I'm open to anything at this point!). If you have scoliosis for example, back or neck injury, it can apparently cause IBS so treating the scoliosis etc can help. Just a thought....I'm going for regular physio now to see if that also helps as I'd love to just relax my eating a tiny bit.