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

My IBS turned out to be diverticulitis and celiac disease.

Awh that's awful. It would have a terrible impact on your daily life.

I'm sorry I don't have any information that could help you.

Stress is going to make it worse though it cannot be avoided either.

Our local health food shop does allergy testing, my dsis found this invaluable when trying to work out her triggers. Also try some reflexology and look into acupuncture both are excellent for digestive issues my dsis still has rough days but nowhere near as bad as it was good luck x x

That sounds utterly, utterly awful. I’m so sorry this is happening. My late DH had IBS, and it came and went without rhyme or reason. He took peppermint capsules which did help (although he smelled of peppermint, but you probably won’t mind!) and I think stress was huge part of it to (not that’s helpful either. It’s obviously stressful to deal with). I also made him use sudocreme, which was helpful in that it was soothing, but it obviously didn’t stay on that long so he had to reapply a lot. But I think it acted almost as a barrier cream, protecting skin from the irritation and repeated wiping.

Is there an IBS charity that could help to put you in touch with local support? Maybe being with people who ‘get it’ would help, and help you access real world coping strategies? I really hope you find something helpful soon.

OP I am so sorry for you. I also spent my twenties like this. It was a waste of a decade as I could barely leave the house, I lost friends, couldn’t find a boyfriend who would tolerate chronic illness.

mine was more IBS in my small intestine and upper GI tract. I had slow intestinal motility so used to become nauseous from eating even the tiniest amount of food. then I used to vacillate between constipation and diarrhoea.

can I ask, what are your symptoms like when you drink alcohol? Do you notice they are different when you do things to activate your sympathetic or parasympathetic nervous system? For eg does alcohol make your symptoms temporarily better or worse? Does diarrhoea wake you from a deep sleep? I suspect it doesn’t. What is the time of day you get triggered the most? Do you get any heart palpitations? Do you get migraines? Do you do any of the classic stretches to relieve gas and get a lot of gas coming out when you do them? Is there a side you lie on which makes the pain better or worse?

have you tried colofac, fibogel, psyllium husk, zofran? Have you ever taken an anti histamine or a travel sickness tablet that has made a difference in your symptoms?

have you ever had a whole day where you have just eaten white rice and water and your symptoms have improved slightly?

i am not kidding when I say that the thing that changed my life the most relating to IBS was taking pressure off myself and not trying to strive forward while all this was going on. I had all these big plans but I had to give up on all of them for my symptoms to stop. While stress and anxiety wasn’t the cause of the symptoms, it was the continual enabler of them until I could go to bed at night and not worry what time I would wake up in the morning. And know that if I had a bad day the next day I could just stay home and do nothing. That freedom, even for a little while, seemed to cancel out some of the parts of it that were self fulfilling prophecies.

Have you had a Sehcat test for bile malabsorption?
www.uhcw.nhs.uk/bam/what-is-bam/

I have had similar and suffered terribly till I worked out the pill causes this for me. Within 2-4 weeks of taking it I could easily write most of your post. Once I realised this I have never had an issue till I’d gone through an exhaustive process and procedures to rule out why I was suddenly getting oily liquid in my stools and not watery stools like the pill causes until I found my favourite go to snack of nuts, cashews in particular, started causing it randomly in my late 20’s. Pretty much given up nuts with the exception of the odd handful every so often and not had any issues at all.

Hope you find out what is triggering yours. I know the misery, spent a lot of money trying to get to the bottom of it to no avail and it was shear fluke, by events of needing to take the pill and then restarting it etc. that I identified the link. The nuts I ignored because I’ve always been able to eat them, but honestly half a pack of nuts now makes everything go greasy, smell foul and enough to start crippling spams that means I swear to never touch them again.

Hope you get to the bottom of it soon.

Are you taking vitamins or food supplements.

Look into Faecal Microbiota Transplantation (FMT).

Assuming it isn't celiac, chrons, Ulcerative colitis etc, I used to have very similar symptoms and it turned out I'm gluten intolerant and sensitive to greasy or rich foods (negative celiac test).

My symptoms were greasy mucosy diarrhea, intense painful cramps after eating and when needing the toilet, awful gas, extreme bloated bubbling stomach after eating which would go on all night.

Progressively worse symptoms after an episode of suspected food poisoning for around 2 or 3 years, until it got so bad I couldn't eat anything, had lost 5 kilos in a few weeks and was considering going to A and E from the stomach cramps. Prescribed Mebeverine which didn't help. FODMAPS diet didn't work for me either. Got sick of waiting for a gastro referral so I eliminated everything and ate only plain boiled white rice for a week. My symptoms improved after around 3 days and then I started introducing everything back in starting very simple such as plain chicken, tuna etc. Now I can definitely not eat gluten but can tolerate food that's may contain it.

If you're intolerant to a food your entire digestive system can get inflamed and then it seems like anything sets it off so it's hard to know what the real culprit is. In my case I had to 'purge' my system first. I still have some food sensitives now which may be from eating gluten for so long to greasy food or if I eat too much rich food but my symptoms are 100x better. I think my own digestive system has been sensitised from it being inflamed for so long which my brain interprets as pain, so what would be normal signals that my digestive tract is using the muscles for example, my brain interprets as pain rather than normal. I did a lot of my own research and found a lot of ibs related research that indicated amitriptyline can help with pain due to the way the brain interprets ibs cramping as chronic pain. I take 20mg amitriptyline everyday and I find it eliminates minor cramping and a long term solution that I sometimes get after eating still. Imodium instants were my go to and I still use them now if I do get some symptoms or accidentally eat gluten etc but I rarely have to resort to it these days. I find they help with cramping as well as stopping the diarrhea.
I find a really hot shower on my lower back helps with really bad cramping If I get it.
You could look into fecal transplants too to improve your gut microbiome and also fermented foods kefir, sauerkraut are helpful. Probitic drinks and tablets and not as effective and contain a small percentage of kefir for example. Boiled rice or potatoes that have been left to cool in the fridge and eaten cold are good also for improving the gut bacteria.

Hope some of this might help, I know how tough it is to get a diagnosis of ibs because it's basically the diagnosis of we don't actually know what's wrong with you figure it out for yourself. I had to take it into my own hands and managed to sort it hopefully you can do the same and get some sort of relief and quality of life back.

I mean I only recently started eating out this year despite being relatively symptom for the last couple of years because of all the traumatic experiences I had previously with my symptoms so its not 'just ibs'. Good luck.

Have you considered endometriosis?

I know it sounds unlikely but honestly your symptoms are very similar to mine. Endometriosis can be treated successfully with surgery.

if endometriosis is on the bowel, then going to the toilet can be agony because the growths from the endometriosis tear and rip. Your also likely to have a low iron count.

I was misdiagnosed with ibs for years, but it was stage 3 endometriosis… The only way to diagnose is a laparoscopy.

Take care

This sounds like the symptoms my DH had and he has ulcerative colitis.

My sister has ulcerative colitis. Before she got a diagnosis, she had a colonoscopy on the NHS. Came back clear. She later had a colonoscopy on another country which found the uc. The NHS one hand simply not gone far enough into her colon to find the problem and so caused months more pain and suffering.

Push again for a full colonoscopy, or look into finding it privately.

Considering your symptoms I would be seeing a completely different medical team and starting afresh.
Your current doctor does not have the solution.
It sounds like ulcerative colitis or crohns.
Both sap energy and the gut is the centre of absorption so it's no surprises you are getting fatigue and negative emotions when no nutrients can be absorbed.
Obviously get medical advice but I'd consider doing a total reset of your body. Eg if you take the pill, maybe consider stopping that etc.
Then very slowly introduce new food. I'd start on water and white rice, then plain potatoes etc etc.
I wish you well.

I’m so sorry you’re having a rough time with this, OP.

It sounds like you’ve tried a lot of things to no avail but just wondering whether you’ve tried Silica and whether you’ve heard of the Nerva app (that’s what it used to be called anyway). There have been studies into the mind influencing IBS - and being able to improve it.

Obviously there have also been some important medical points raised here and I’m assuming you’ve likely tried the usual things - colpermin, amitryptiline, colofac, symprove, buscopan, etc.

I really hope you get some better medical help. It sounds really tough.

This sounds terrible. I think you should involve someone from the patient advocacy service to help you articulate to Health that you cannot go on like this etc! I have had to do that over recent months to get involvement from a Community Mental Health Team. It is a good idea to think about a private assessment but I do appreciate that this is not always an option.

Sorry to hear you are dealing with this. As others said, have all other medical conditions like Crohns been ruled out? As you probably know IBS is (should be) diagnosed only once others have been excluded.
Presumably you’ve kept/are keeping a symptom journal to track triggers? Request allergy testing through your GP, if you haven’t gone down that route yet.
Could stress be a component of this? Even early childhood stresses? The mind and gut especially are very connected. You could have an overactive nervous system. The Curable app has helped a lot of complex medical cases that haven’t responded to standard treatment. Looking into gut micro biome, pre and pro biotics could be useful too.

I have horribly painful and debilitating IBS too, but have found, quite unintentionally as it was prescribed for chronic regional pain syndrome rather than the IBS, that the painkiller Nefopam has stopped 99% of my attacks!

It seems a bit like a miracle, but it's only when my stress levels reach sky high that the IBS gets back in. Nefopam works entirely differently from other painkillers, so you may have to specifically request your GP prescribes it. Apparently not all doctors are aware of it (!?).

My other thought worries me for you a lot - have you been checked for pancreatic cancer? I don't want to scare you, but your symptoms also sound a lot like my late FIL's and that was what he had.

btw this might be of interest to you: "Nefopam is a centrally acting, non-opioid painkilling medication, that is primarily used to treat moderate to severe pain. Nefopam acts in the brain and spinal cord to relieve pain via novel mechanisms: antinociceptive effects from triple monoamine reuptake inhibition, and antihyperalgesic activity through modulation of glutamatergic transmission." and "It is not fully understood how nefopam works, but it interrupts the pain messages being sent to the brain and also acts in the brain to stop pain messages being felt. Nefopam has fewer side effects than strong opioid painkillers such as codeine and morphine. It can be useful for the management of persistent pain that is not relieved by other non-opioid painkillers"

I pray you feel much, much better soon and re-discover happiness.💐

Exactly what I was thinking. Black stools plus anaemia very much suggests bleeding from the gut. I can believe they haven’t investigated that.

Oily stools strongly suggests a liver problem.

I really feel for you. I have IBS and it was very bad - very much as you describe. I eventually went to a registered dietician (private practice) who specialises in IBS - not all of them do - and she diagnosed me. For me the food intolerances are vasoactive amines and FODMAP. I’m ok now as long as I don’t eat too much of the wrong stuff. I do get flare ups if I’m not careful. I went private out of sheer desperation because I felt I couldn’t live like that any more. I was extremely lucky to find the dietician who pretty much wrote the book on vasoactive amine intolerance and she recognised the symptoms immediately.

Germoloids cream has been a lifesaver for that acid burn pain in the backside, which is horrendous. One doctor suggested not using dry loo paper, but using a cream on the paper. I use aqueous cream on paper and it is much better.

I think it’s likely that your problems have more than 1 cause. Possibly it’s food intolerances plus other causes including those that PPs have suggested, like diverticulitis or endometriosis.

The NHS is really bad at this. There’s this idea that “IBS” is relatively minor and incurable, something to just live with. Some GPs seem to have zero interest in finding out what more could be done to improve the sufferer’s quality of life. Your gastro department sound disinterested too. I hope you can get seen by someone with better expertise.

Oh OP, I've no real advice but just wanted to say I'm so sorry you're going through this, it sounds absolutely awful. I'm sure you've already thought of it/had it looked into, but did the stool sample that they said looked fine rule out parasites? I had many similar IBS symptoms when I contracted Giardia, which is a bastard of a parasite. Took months to figure out what it was and an absolute mountain of probiotics (which actually made a huge difference for me, I used Digestive Advantage IBS relief I think) but it did get better. Not sure I'll ever be back to normal totally but things did improve once the parasite was diagnosed. Sending you a big hug

Have you looked at a fecal transplant?

Hi hun , bug hugs 🫂
You havent mentioned what all medication you have tried. Have you tried diarrhea relief capsules ? If so which ones?
I feel you , I really do.
I'm late 30s and have been dealing with ibs since my teens. I think I was diagnosed around 17 .
My entire teens and 20s were spent in the house. I was never out to make friends and I feel like I missed out on so much in life and could never stay away.
It absolutely ruins your life.
I still open the windows, blare the TV and lock myself in the bathroom while I'm having an ibs episode then act like the cat took a dump and stunk the house out lol 😆

Some days I have diarrhea all day long and other days it's like half diarrhea half normal gunky gloopy inside you and just won't come out. Like a raw wet cake batter lol Sometimes it's an absolute mess around my bum that i shower like 5 times a day. This might be too graphic but alot of time like every day I have to get a glove and toilet paper and use my finger to help get it out from inside me. Several times a day.
I've been to gp so many times. The response is usually the same . Keep taking fybogel , which is doing absolutely nothing for me. I don't take it as I found it was making my ibs worse! Then they say keep a diary. I've done that too which Is impossible because one day a certain food will be ok , next time it might give me diarrhea. A food diary dosent work because it depends on the mood my bowel Is in.
I've had periods of time where I've lived on painkillers just to kill the pain of feeling like my a hole was on fire 🔥.

l do have cuts and i bleed alot fom my bum too. Sometimes I get this pain goes from my anus all the way though to my vagina it feels like a pole has been shafted through , it's absolute agony.
It's puts alot of pressure feeling in my vagina that it makes me run to pee a million times a day also.
Ibs is a life ruiner.
I live on immodium.
I was taking it every other day and its the only thing that will actually work to stop the diarrhea, when I do need to go again it hardens up the poo.
Your not meant to take them everyday but I take them once or twice a week and it helps lessen the suffering.
In also taking different supplements which I notice my diarrhea isn't just as bad. Sometimes now occasionally I can go to the toilet and wipe and it's normal. I don't know if they are helping but I think they might be a little. I take a few different so it's hard to know which is helping tho but I'm certainly nowhere near as bad as I used to be.

Sorry I'm sure someone will be digsuted reading our comments lol but I wanted to detail all that to show you your not alone

I had IBS when I lived in the UK. When I left, I was immediately referred for an emergency colonoscopy and had infected and torn diverticulitis. A small surgery and antibiotics and I haven't had diarrhoea in 12 years. And I used to crap in the back of my car into a bag in traffic jams. My Dr said there's no such thing as IBS, diagnoses is a system of elimination and the NHS don't fund that. Go private and get a colonoscopy and don't tolerate the fob offs. I lost my 30s to the NHS.

This could be microscopic colitis which can only be diagnosed with a biopsy in a colonoscopy ( it can’t be seen on the camera) . The inflammation causes these symptoms. Lots of people have MC but are misdiagnosed as IBS. There is medication which can help MC but you have to be tested and diagnosed first. Diet and probiotics have helped me significantly. There are a lot more tests which could be done for you - it’s a horrible condition but can be managed. You need to press for further tests and more help.

By the way have you tried eating and pooping at the exact same time every day ?
I've been doing this for around 3 months and I've found trying to force my body into routine has really helped.i tried it because I've had alot of appointments and needed to leave the house more plus had my first ever holiday last month. For example I will eat around 4pm then I make myself go to the toilet at 5pm. Id eat dinner around 8 or 9 then go toilet again. Then i go before bed. Which is ussually 1am or later for me. Weather I needed it or not, I'd try to hold it until my time frame. If I got diarrhea I'd take immodium to settle it and just keep trying to force myself into a routine. I honestly had to take it on and off for few weeks to sort me into a routine. It took a little while but honestly it's helped me. Now I go at 5pm every day like clockwork. I go around the 10pm news and just before bed be it 1am or 2am. I think its somehow helped trick my diarrhea into working with me. Now my poo comes when I want it to. Only occasionally it comes on its own. Now I don't have diarrhea just as much either. Maybe 2 or 3 a week which is better than 7 days a week and
Pooing 3 times a day is a hell of a lot of improvement from every hour or so which is was like before.
I thought I'd never be able to control it but I do think it's possible.
My problem is it's still goopy tho and I still often have to finger by bumhole lol but I'm fine with that cause at least my life is a little more normal