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 @upsetandfedupandmiserable . I have IBS as well, and I understand exactly how you feel. It rules your life and ruins it. I find that using haemorrhoid cream helps with the soreness.

I have to mention in case it’s of any use that I use to have IBS which would flare up especially during really stressful times. It wasn’t nearly as bad as yours though. I also had a diagnosis of OCD and eventually went onto an SSRI for it. Weirdly the SSRI took away my IBS. When I went back to the consultant I asked him about it and asked if it was just a coincidence. He said SSRIs can be prescribed off licence for IBS. Your gut produces more serotonin than your brain and so SSRIs can help ease IBS.

Im so sorry that you are going through this, I have seen what it is like for someone to be misdiagnosed for years. So much advice and ideas on this thread, I hope you find something that helps. It's good that you have written it down here and can make that into a simple list of symptoms and thoughts to produce at the next appointment. Keep trying to get help with as much info as you can. Wishing you all the best.

You've had some great advice here, OP.

I hope you can find an answer, it sounds utterly miserable for you.

Hey, thanks so much for all the comments with help and advice.

i was so upset last night and I think I just needed to get my frustration out! I’ve just reread my post and hadn’t appreciated how often I swore in it, sorry!

thanks for all the advice and tips.

the symptoms have been going on for 4+ years now. I’ve done food elimination for gluten, dairy and I’ve been extremely strict with it and I didn’t give up after a week but unfortunately we didn’t find any link. The dietician I saw was actually an IBS specialist and she had discharge me because the elimination and fodmap and exclusion diets didn’t make a difference. it I even had a period of eating purely bland rice and it didn’t settle my symptoms either.

the episode of black poo just happened once (multiple times within that episode but just one episode) and that was what made them do the endoscopy and sigmoidoscopy because before that they had refused. I was told I was getting a colonoscopy to check everything once and for all but the follow up letter said it was a sigmoidoscopy of my small bowel and the biopsy they took was of the small bowel (I think) which was normal. The consultant acted a bit annoyed at me in the first place because he said my tests were normal and I shouldn’t be in hospital, but the initial doctor told me to stay and wait for the consultant because the blood test showed low iron or something like that. I’ve had multiple blood tests (for the ibs!) over the last few years and have donated blood in the past before all this and I’ve never had low iron before, but he said it was normal in younger females who are on their period, but I don’t get periods (well i do but not very often!) anyway they did an endoscopy and sigmoidoscopy and thankfully everything was fine, but I can’t go back now because they’ve said it’s just IBS and there’s nothing else they can do for me

im not saying they’re incorrect that it’s ibs because my blood test was fine, my calprotectin was normal and the sigmoidoscopy was fine so I believe them that it’s just IBS, but ive asked for help with my symptoms and it’s just I’ve got to live with it and i honestly can’t.

yesterday when I went to the toilet, it wasn’t diarrhoea as such but it was fluffy and gunky with mucus and with some small areas of red blood on it- it honestly looked like I’d blown my nose in the toilet. It was so acidic I couldn’t even sit down on the coach afterwards because of how much the entire area stung afterwards. I just don’t see how I can live this way!

anyway sorry for the rant; it’s reassuring in some ways that other people have had this and I’m not alone x

Just wanted to say, I've had the exact symptoms you describe. My trigger seems to be ‘eating any food’!

I've found that taking psyllium fibre supplements first thing every morning, biokult probiotics and mebeverine for the pain has made things a bit more manageable and I can now feel a bit less trapped at home.

When mine was at its worst like yours I felt like death and my hair fell out. Turned out to have B12 and iron deficiency from malabsorption. You may want to try supplements for this (gentle iron sachets are best).

Of course I had to figure all of this out myself because of complete fob off from my GP.

I really feel for you, and hope some of this info helps.

Ok I'm just going to say that I had horrendous symptoms similar to yours on the pill @upsetandfedupandmiserable. I was told by everyone I saw for repeat prescription of the mini pill that it was 'not related'. Then I went private and a gynaecologist told me blithely;

'oh yes, progesterone slows and alters bowel function - but the people you see care more about preventing pregnancy, it's their goal to keep you taking it'
And leave your life in tatters.

All symptoms stopped within 48 hours of stopping the pill. It's something they will lie about outright, to thousands of women. No no dear, don't worry your little head about the terrible pain and diarrhoea and wind and awful symptoms. You just go away and keep taking the pill.

hello OP, a close family member has something very similar, with similar symptoms. He was eventually diagnosed with Functional Bowel Disorder, which they believe linked to PTSD / CPTSD from a super difficult childhood and some other traumas he suffered. It basically means that the brain and gut have an issue communicating with each other which messes up digestion. Also the gut has its own "brain" and grey matter which is affected by this. Although they don't know exactly how to fix it or 100% what is going on. Do you have unresolved traumas? Difficult past history? If so might you want to look at treating some of the underlying reasons, get therapy or other treatment for those. I appreciate this may not be the case at all for you but it is definitely worth considering in case it's an avenue you haven't considered.

You need a full colonoscopy. And a gastroscopy.

OK so, I have IBS and allllll the symptoms you've listed. I could have basically wrote the post tbh. What has helped me
B12 injections. Ask them to test you for B12 and be strong about it, you'd be surprised how many health issues Low B12 hides/causes. If it's even borderline try pushing for injections. If they won't you can get them in like beauty shops n stuff now. I have the deficiency that can't be bettered by food.
Stress - stress is one of my main contenders with IBS and obviously you can get yourself in a vicious cycle worrying about your next attack. Find things that works for you, a hobby, meditation, relaxing baths etc.
Breathing - I know but just try. When you're having you pain or your stich pain try breathing in for 3 and then slowing breathing down and out for 5 and I mean do it so it feels like you are pushing down with your breath, it really helps.
Failing that, there is hope when you have a child, mine completely went when I had my daughter, but unfortunately came back when I had my son. Don't know why but it was a lovely couple of years!
Good luck, it's hell and very lacking of understanding.

I'm really sorry that you're living like this - it must be so hard.

I know that you've tried a lot of exclusion diets, but in your place I would give up lactose and gluten permenantly and see if that helps over the long term.

Gluten allergies, and in particular celiac, can take a long time to show improvement because the digestive system needs time to repair before improvement shows. Give it at least 6 months before you decide it hasn't worked.

It might not work at all, but has the advantage that you can do it whilst pushing for further investigations. In your position I would save up and go private for this.

One other thing - have you tried friendly bacteria supplements and live bacteria yogurt / food? a small thing but might help a bit.

If I was you I would try to take antihistamines.

give them a shot. If this is your immune system causing an attack on you when you eat try to suppress it then see what happens

i also assume that you take Imodium prior to a meal out?

I know someone who has this and it’s what they do. Although like you they struggle to accept there’s no help out there for them

My husband and my adult daughter bother suffer with IBS and your symptoms sound very much like my husbands before he got it under control.

two things made a massive difference to him. One, he cut out all meats and within days felt so much better.
He now lives a much happier, healthier life as a vegetarian (I’m not vegetarian, so this isn’t a rally to get you or anyone else to quit meat.)
and secondly he has a probiotic yogurt drink every day. He has a Yakuly daily, without fail. If he misses taking his probiotic it really does make a big difference to him.

They are available in every supermarket. We also have kimchi and sauerkraut in to add to meal, just as a belt and braces approach. But I understand they are both an acquired taste.

Try cutting out meat and adding a Yakut a day to your intake. You’ve nothing to lose.

Yakut, not yakuly 🥴

@upsetandfedupandmiserable
Thank you SO much for this thread.
Also to everyone who has commented & suggested what could be wrong, & for possible things to take to treat it. I have made notes of anything relevant to me (very similar to you, OP, but not AS bad) & will be asking my GP next time I see her, about it all, as I've had dodgy liver results & BAM could be the culprit..

Am in the middle of a flare up just now. The pain & bloating is absolutely no joke.
#fed up
Hugs OP.

OP if it helps, a week of restrictive food would have done nothing whatsoever for me, so it would be worth spending 12 weeks, not the recommended 1, on a really restrictive diet to get any results from that (if it works, that longer period is when you will see it). Tbh the damage to your gut currently might be causing a lot of the funny poo etc symptoms you're seeing at the moment and your gut needs time to heal (if it's IBS related) so that it is in a decent enough condition for those symptoms to stop...

Are there any autoimmune illnesses that run through the family? The obvious culprits are Crohns, ulceritive colitis and celiac. However systemic ones like ankylosing spondylitis or lupus also often causes bowel inflammation. Your 20s is the typical time frame for autoimmune conditions to appear. I know so many friends (and myself) who suffered through university with mystery symptoms only to be diagnosed with something in their mid-late 20s.

I had IBS in my 20s, not as bad as your but it definitely affected my life to some extent. Random episodes of urgent diarrhea after eating, diarrhea in the mornings, mucus and unexplained cramps/pain. Then I was diagnosed with lupus for totally unrelated symptoms, started taking medication and all the IBS symptoms disappeared. Been 10 years now and still free of all digestive issues.

Also agree - I had this and it was my pill. I am one month off and not 100% but now only bad if I eat certain foods

Loperamide should help with diarroeah, available OTC.
Has the GP suggested an SSRI medication? These do help some people though often prescribed for something else.

I've had similar problems since my teens. Doctors never wanted to know, I've even been laughed at by one.
A Sigmoidoscopy just looks at the sigmoid colon. They should have done a full colonoscopy, the black poo is a red flag for bleeding within the intestine and could've been further round.
It's good that your calproctin levels were normal, although I don't think that's a fail safe for ruling out IBD.
Mucus indicates inflammation, although IBS can cause this. Red blood can be piles or small fissures if you're going to the toilet a lot.
Have you had bloods done to check your inflammation markers?
Also it might be worth having your gallbladder checked.

I have UC and the thing that's worked for me is cutting out (or cutting massively down as it's in everything) rapeseed oli, maltodextrin and making my own wraps, pastry, bread etc. Basically cutting out foods with loads of chemical ingredients in. Ice been doing it 3 months and had sigmoidoscopy last weekend they said it's all healed! I like this you dont have to cut out any major food groups, just cut out all the chemicals! Good luck xx

Have done a cleanse?

I was 23/24 and in the exact same situation as you, in agony since I was around 19, I did a 3 month juice cleanse (breakfast & lunch juice/shake and low fat/low carb tea - mainly chicken/fish & gluten free rice) and I’ve never looked back! I can’t believe the agony I was in compared to now, sometimes the toilet trips were close to labour pains. I had bloods, colonoscopy, numerous trips to gastro and medications- nothing helped until I did my cleanse. It’s like my body needed emptying and starting again, it was hard but so worth it. I’m now early 30s and never had a flare up.

It sounds very much like I was before my ulcerative colitis diagnosis except a had huge blood loss frequently
would they prescribe steroids or anti inflammatory drugs to see if it makes a difference?

@upsetandfedupandmiserable
Hi! So sorry you're going through this. You sound very similar to me, although I definitely don't go as often as 15x per day. I mainly suffer with diarrhoea that can be extremely painful and I've also had all the tests that came back 'normal' and was just told that I had "a severe case of IBS". I fainted from the pain last year and had to rush to A&E with a bash to the nose after falling into the bath taps whilst sitting on the toilet with bowel pain. They believe the pain was from obstruction of the bowel and could be due to IBS but again, nothing they can do other than prescribe a couple of different medications which don't help.
I haven't read others responses so not sure of anyone else's suggestions and I know this is going to sound ridiculous given that it's something that can be purchased from a supermarket, but what has really helped me a lot (surprisingly) is Actimel. I started buying it (purely because it was on offer and I like the taste) and after a week, I'd noticed the diarrhoea had become A LOT less frequent. My partner had mentioned perhaps it was the actimel as it's a probiotic and after reading up on it, it's supposed to be great for IBS sufferers because it's got good live bacteria and people with IBS tend to have too much bad bacteria in the gut so the actimel balances out the bacteria.
Like I say, I know it sounds ridiculous after going to the GP and hospital for so many years and having different tests and prescriptions, but it did help me. I do still have diarrhoea but definitely not as much so hopefully it could help you not go as often because it is miserable and I worry everywhere I go in case I need to use the toilet urgently. Hope it gets better for you x