Not just IBS?

[Whoremoan]

Over the last 6 weeks, I've noticed a dramatic change in my 'IBS' symptoms. In the last 3 weeks, things have got a lot worse and today I'm barely able to work. I've got fairly severe pain in my lower left side, urgent and constant need to go to the loo and have what you might call 'loose stools', really, really really bad nausea which is so bad today I can't eat and has been there on and off for the last 3 weeks - so that I've lost 9lbs in weight.

The pain and nausea wake me up in the middle of the night. I also feel the urgent need then to go to the loo. I've also had recurrent really bad pain in my lower spine and upper spine - the same kind of pain I had years ago when I got meningitis. I feel really really ill and exhausted and as if someone is twisting a red hot poker in my lower left side. I look very pale but I feel cold and shivery and don't have a high temperature.

The symptoms - especially the nausea and pain - are worse after pooing and sometimes slightly better after eating - although eating isn't an option today, I feel SO sick. I tried to eat this morning but just felt worse but last night when I ate, I felt better then.

I've also monitored my stress levels across the last 2 years and there's absolutely no connection between symptoms and stress. In fact I had a stressful event early last year and I felt totally fine then whereas over the last 3 to 6 weeks, as the symptoms have got worse, I've felt otherwise relaxed and happy and calm with nothing else going on that might make me feel ill.

I was diagnosed 2 years ago after an acute flu-like illness and after all the red flag symptoms I had had been investigated. Nothing 'bad' was found, so I ended up with the IBS diagnosis.

I put myself on the LowFodmap diet and was able to manage stomach pain OK just using relaxation methods. I was permanently constipated from then on - but still 'regular - I guess because of a low fibre diet and I just got on with things.

I've been back once to my consultant about a year ago when I had lots of blood in my stools, more pain and felt really ill but he just said it was possibly a virus or IBS.

So I've tried to think of the current symptoms as 'just IBS' but it's never been like this before. I've never before had such nausea and loss of appetite. My bms (sorry TMI!) have changed dramatically from hard pellets to skinny ribbony, foul smelling and urgent. I've had a whole week of not 'going to the loo' at all at times, recently and then not being able to get off the loo and 'going' several times.

So is this just a new development of IBS - or does it sound like something different? It feels nothing at all like a tummy bug as it's gone on so long now and seems to be getting worse again, after seeming to get a bit better.

I can't get a GP appointment for 2 weeks and the consultant's secretary hasn't yet got back to me about an appointment with him but I don't like seeing doctors as they get really patronising and put it all down to IBS.

So whilst waiting for medical appointments, I thought someone on here might have had similar symptoms and if it just sounds like IBS - then that would be very reassuring right now.

I should add that unlike with IBS, I feel a lot worse AFTER having a bm - with increased nausea and increased pain. With IBS, it usually reduces symptoms when you go to the loo.

Has anyone experienced anything like this themselves?

The consultant can't see me for over a week either.

Poor you, sounds horrible.
I have similar issues and have been referred for blood tests and MRI to check for Crohns or Coeliac antibodies.

The symptoms of nausea, pain and weight loss particularly are common crohns issues.
Think you should read up on that then go to your doctor prepared - I have been referred on much milder syptoms than you describe.
Hope you feel better soon

Could it be something to do with your gall bladder ? It sounds awful , could you go to out of hours or ask for a telephone consultation

🌷Hope you feel much better soon

Definitely see your GP and consultant, and don't let yourself be fobbed off. All too often women's bowl issues are chalked up to IBS while the real cause goes undiagnosed. It could be something perfectly treatable so don't panic, but push for investigations to get to the bottom of this. The things that stand out to me as being particularly not IBSy are the fact that you wake up in the night with the urge to poo, the fact that the pain is worse after pooing, and the fact that you feel ill in yourself. Basically tell the doctors everything you have written here, write it down and take a bullet point list with you if necessary. Good luck with it, and I hope that you are able to get treatment and sort this out for good

That's horrid! Sorry you're feeling so terrible.

I have similar symptoms, my doc has suggested either Crohns or ulcerative colitis but obviously I'm imagining something worse and getting all worked up over something that is probably v easy to treat. I have an appointment with a specialist on Wed.

If you possibly can, DEMAND a colonoscopy - or if they refuse and you can afford it, it might be worth trying to get one privately...

Good luck!

The pain you're describing sounds the same as when I have a flare up of diverticulitis, feels like a red hot poker going through my lower left side and an excruciating back pain. The pain increases with sitting or bending, also after a BM.
However it would coincide with me being constipated or sluggish.
Before my first flare up I had bad stabbing pains around ovulation, so I was originally scanned for ovarian cysts.
Hope you feel better soon, a hot water bottle is very helpful for stomach pains!

I have crohn's and IBS. The only thing it sounds vaguely similar to that I've experienced is extreme constipation. I know it sounds odd, but when you're very constipated you can get loose bowel movements because that's all that can squeeze past the impaction in your gut. Gave me lower back pain, cramps and nausea, lack of appetite too. Just a thought seeing as you're on a low fodmap diet.

That isn't IBS. You need to call your GP for an emergency same-day appointment.

Thanks everyone. I don't know if it really merits an emergency appointment and in any case am working tomorrow and am also a single mum - so it's difficult to be ill or see a doctor at all. One of my DCs has SN and I'm having to protect them from knowing I'm ill, as they freak out and worry and get angry if I'm at all ill.

I've wondered if it could be diverticulitis or Crohn's or something but I did have the full set of invasive tests 2 years ago, including colonoscopy, gastroscopy, CT scan, blood tests, biopsies, stool sample.

The only thing of note was a very high faecel calprotectin test which is a typical marker of inflammation but the consultant insisted it wasn't anything to worry about and when I saw him again about a year ago now, with some other symptoms of blood/diarrhoea and pain, he did a quick once over check and said it's a virus and IBS - off you go.

I'm expecting he'll say the same this time although the symptoms are different. Katkin, I don't think it's constipation related as I'm 'going' a lot. I can't feel anything 'hard' in my stomach when I feel it, which I was getting across lots of the last 2 years on the low fodmap diet. However, despite changing nothing about that diet, this all suddenly happened.

I feel really generally ill and have a headache, the spinal pain, the abdominal pain, nausea and am icy, icy cold. Would I have a high temperature if it was something really bad?

My tongue and mouth is dry and completely white at the back and there's such a horrible taste in my mouth. I've been getting recurrent mouth ulcers and dry, sore eyes but assumed that was a sign of perimenopause. I'm still having periods but only every few months and am in my mid fifties. I was also surprised to be diagnosed with IBS for the first time, in my 50s as I thought this diagnosis was more common in younger people.

I wish I could eat a proper meal as my body sort of feels it needs nutrients but the last time I started to eat more again, it then triggered off another bout of nausea, pain and diarrhoea.

Could it be an undetected, obscure parasite that keeps multiplying and growing and then reducing again? Can parasites do that? If so, can they also go undetected if you only have one stool sample?

I'm sorry & I don't mean to worry you but I have Crohns & your symptoms sound so much like mine did 5 years ago just before I was diagnosed (I was 44 at the time & had been told I had IBS many years earlier after loads of tests) especially the back pain, mouth ulcers & eye problems. Please, please see your GP as soon as possible & get a referral to a different Gastroenterologist, preferably one who specialises in IBD. Anaemia is common with IDB which could explain why you feel cold all the time. My bloods were normal until I became really ill then my CRP level went up massively & my Faecal calprotectin level was over 1500 which is very high. I'm now in remission & really well but it's taken a while & surgery 2 years ago to get me here. Hope you get some answers soon, the not knowing is the worst part. Take care

You must go to the doctor - and definitely sooner than 2 weeks.

This is clearly not IBS - others have pointed out the symptom mismatch.

As someone with a lifetime of IBS I was very struck by the fact that you needed to make clear that the symptoms are not stress-related. I cannot tell you how many times I was told "It's OK - it's ONLY IBS" - the only is interesting - there is nothing "only" about IBS when it is severe - it is misery and curtails activities. Decades of crapping 10 or more times every day and unable to get to work without stopping the car hopping over a hedge to crap.

I am quite sure that ine day scientists will discover the cause of IBS symptoms and that it will be related to the highly complex "gut brain."

I really do think that your symptoms require a speedier appointment. I understand and empathise with your fear of being fobbed off, patronised and patted on the head - anyone with IBS will recognise this feeling.

Do get it looked at - you sound so very unwell.

Thanks. I can't get an earlier appointment but have a consultant one next Saturday and a GP one the Monday after that. But this means I'll be seeing the consultant before the GP, which means I can't get a referral to a different consultant.

I was awake most of last night in pain - localised, left lower side/groin, burning hot feeling - with nausea and headache. I didn't eat at all before working this morning but have just tried some potato, chicken and a tiny bit of rice - about a tablespoon full in all. I've started to feel sick again and the pain is worse.

Could this really just be constipation? It's been 2 days now since I 'went' but then that was v loose stools.

The hardest part is trying to act OK in front of DCs and they've seen my doctor's appointment on the wall calendar now and DC with SN is totally furious that I'm ill again and won't speak to me at all. I'm actually acting not ill around him but he always gets very very angry if he knows I'm not well. So that's not helping.

Having eaten, although at first I thought I felt better for it, I'm now beginning to feel as if my body is having an almost allergic reaction to eating. But I can't go many more days without food - and still work - and still look after the home and DCs. So I'm gritting my teeth now as the lower left pain gets worse again and I begin to feel more sick.

Local A & E and OOHs services are oversubscribes and I don't think I could dace the car journey, the parking and then the 6 hr wait.

Are you feeling any better? Really really do think you should go to the A+E! Definitely don't want to scare you, but leaving something like this until it gets critical could mean emergency surgery and weeks off work. Go and head it off while you can!

Faecal calprotectin is not raised with IBS, so if yours was high it points towards some form of IBD. A colonoscopy won't see anything in the small bowel and crohns can be very hard to find if it's hiding in the small bowel, a capsule endoscopy is the best way.

I had UC, I was always told that IBS doesn't cause you to need the toilet in the night, that if you are waking just to run to the toilet it's something inflammatory.

Hope that you can get some answers soon.

Thanks. No better and in some ways worse but struggling on until my Saturday appointment with the consultant. He was adamant that I just have IBS and told me that the raised faecal calprotectin wasn't of concern and that sometimes people have a higher level and that's fine.

When he did all the scopes in 2015, he said he couldn't actually see much as he was doing it as the laxative hadn't apparently fully worked. I was fully conscious throughout as I didn't have a a sedative so I remember this well but afterwards he said he could see enough and that biopsies had proved all fine.

Southwest1, what does a capsule endoscopy involve? If he refuses to take things further, what do I do? It's complicated as I'm seeing him privately on Sat but that was only to speed things up and I can't easily afford to pay fro private investigations, Last time these were fast tracked on NHS. They won't want to do these again as they were done 2 years ago and it was said all was fine.

Meanwhile, I'm waking every night shivering and/or sweating and feeling v v sick and with a thundering headache and awful pain at the base of my spine and at my neck area. I keep trying to eat during the day and sometimes feel less nauseous but have 'urgent loose stools' again this morning and feel more sick again.

I've got the lower left side abdominal pain and feel really 'flu-like' ill just as I felt when i first had this in 2015. However, as I've had months on end when I've felt a lot better, with just 'ordinary' IBS symptoms, I'm assuming it can't be something like cancer and must be some inflammatory disease that keeps recurring.

Would IBD behave like this - coming and going?

I look so waxy pale but am still hiding everything from my DCs and am just about to begin work for the day now (I'm self-employed so can't afford time off).

I think you have IBD, your doctor is a cock! Demand to see a different one ASAP. You can't carry on like this.

When it come to Crohn's you e got to be the specialist, I knew I had it and I kept going back to the doctors, I was forceful and didn't accept I had a grumbling appendix, IBD, gall stones. I knew, I had read on line people's experience with it and it sounded just like my problems. I had dry crusty eyes, ethema nodosum, constipation, sore limbs, really really fatigued, I knew I was really ill.

Capsule endoscopy is a tiny camera in a plastic container that's like a large vitamin pill size and you swallow it and wear a recording device and it takes pictures every few seconds and transmits them to the recorder. The Dr then has about 8 hours worth of video to watch, but it's the only thing that gets into the whole of the small bowel.

IBD does come and go, it's a relapsing/remitting disease, some people have years of being well before they flare up again, others like me never have remission and end up needing surgery.

Similar issues here and SO fed up of being fobbed off. I have had two colonoscopies over the years... first one couldn't get round the bend (at the point where I get severe pain..deep on the right had side) second identified a narrowing there and an inflamed patch but apparently that was ok!

Several times over the years the pain and symptoms have settled but now in a flare of whatever it is since November..horrible pain with deep pelvic pressure that makes it hurt to stand after a while, mouth ulcers, feel wrecked. Had a scan of my ovaries (fine) nothing else suggested and I am mainlining painkillers and surgically attached to my hot water bottle. Bowel incredibly erratic and pain not relieved by a poo.

So fed up and don't know what to do next..it is really impacting my job and life (have a son with SN too),so am bookmarking with sympathetic interest. I am wondering just how incapacitated I have to get before anyone will help :/

StillMedusa inflammation at the terminal ileum (you will feel pain on the right side of your abdomen) is the most classic place for Crohn's to start. Don't be fobbed off, go back again.

Thanks Goblin..that's exactly where the pain is. I have just booked another appointment online. I hate feeling like they will have me listed as a 'frequent flyer' but something IS wrong !

I suffered for two yr with Crohn's before it was diagnosed as Crohn's. My gastroenterologist thought I had anorexia nervosa. I didn't and this was unbelievably unhelpful when I was crying out for help with a physical illness, not a mental one. Persevere for a proper diagnosis of yr condition. Good luck.

Goblin mines at the terminal ileum too! I hurt just below my belly button and the right side too. With full pains up my front to my chest. Urgh...it's a horrible disease!

I saw the consultant today and he says I might have diverticulitis. I'm going to be referred for a CT scan and a flexible sigmoidoscopy and blood tests but of course all of this may take time to arrange, even though I'm willing to pay for these privately.

He completely ruled out IBD. He suggested it still might just be IBS! However, he did take seriously the fact that I have severe localised, lower abdominal pain (which is so so bad today) and flu like symptoms etc. He was utterly sarcastic when I suggested other possible diagnoses at first.

If it's diverticulitis, I'd need to go on antibiotics which will of course mess up my gut flora even more and he even said I might get clistridium difficile. After antibiotics, I'd have to be on a high fibre diet and this is where it starts to look really crazy. I WAS on a high fibre, vegetarian diet for almost my entire life until 2 years ago when I first got ill. I then was told to change to low fibre, low fodmap diet and eat meat and fish - which I've now been doing for 2 years. But might this have actually caused diverticular disease?

If it could be diverticulitis, then as the symptoms are exactly the same as 2 years ago, it may be that I was undiagnosed and untreated back then and so suffered 4 to 6 months of feeling really ill.

I'm now playing it all down with DS with SN and acting cheerful and nonchalant but he's become more withdrawn and morose as I had to tell him I would be having further tests shortly. I'm finding it very hard to manage with him and do all the usual domestic stuff and work and yet be in considerable pain all the time.

Has anyone had diverticultitis? Any hints and tips for coping with the pain, the nausea and the general flu-like feeling?