IBS? Ulcerative colitis? Something worse?

[Spinstar]

I'm 51 and keep getting recurrent bouts of diarrhoea that wake me from deep sleep in the early hours of the morning with an urgent need to 'go'. I think I've had about 5 episodes now since mid December and the latest two have been accompanied by upper abdominal acid-like pain.

At first, I thought it was just a bug I'd picked up but after a few episodes now, I'm wondering if it's something more? I've not had symptoms like this unless I've got a gastroenteritis bug but can't imagine one would recur like this for 3+ months now.

Could it be purely perimenopausal hormones? It doesn't seem to follow any pattern around my cycle (still menstruating but a bit less regularly and got a few other mild perimenopausal symptoms.)

I've had no blood in my stools and I've also had days when I've seemed fine again. I'm not losing weight and I'm still hungry although less so because of the pain and fear that I'll be up in the night. I'm no more stressed than I ever am and not at all prone to anything like anxiety or mood disorders.

Up until it started, I was largely eating a healthy vegetarian diet and more prone to constipation than diarrhoea. Now I can only eat the blandest foods and I'm still in pain and waking with diarrhoea but the diarrhoea isn't all that bad - ie it doesn't go on all day.

I've never had IBS or any allergies. I've always thought of myself as having a 'cast iron stomach' and it takes a lot to make me sick, although I've recently had a nasty flu/chest infection virus thing that hasn't fully cleared after 3 weeks. However, the diarrhoea and pain pre-dates this by months.

Does anyone recognise these symptoms? Why would I suddenly get something like this now? Does it sound like a bug picked up from somewhere and why would it recur but not persist daily all the time? I've been fine enough between bouts. Is it related to hormones and my age and nothing else?

The day before the first episode, we visited a NT place attached to a farm but didn't go to the farm part but I did have a cuppa at the cafe and the next day, had the first episode of early morning, explosive and urgent diarrhoea. However, if it were a bug picked up from the farm, wouldn't it persist rather than clear up and then recur?

I've looked on the internet as I want to rule out anything really nasty and I'm reluctant to see a GP as I don't want to initiate unnecessary investigations or a nebulous diagnosis of IBS, which i know many women get diagnosed with, when doctors have no other explanation. So that's why I've come on here to see if anyone goes, "Oh yeah. That's obviously....xxxxx"

Thanks, Peace. I may ask the surgery if I could have any more tests directly at the hospital, which is so much easier to get to.

Not sure it's gallstones/gallbladder as I don't think I have those symptoms. My pain has been mostly in the upper left hand and lower left hand abdominal quadrant and far from sweating, I'm feeling ice cold a lot of the time and shivering, but with no temperature.

Poo has now started to go yellowish?!? Weird. I wish I could go back to a time when I never even had to think about this kind of thing and could largely ignore my body!

Got the chest X ray today but they don't tell you anything at the time and then it's a week's wait till my next GP appointment. Right now I'd gladly pay anything to get this diagnosed and cured - if that's possible - within the next week. The waiting is awful, especially if there's something going on that could and should be treated now and after 7 weeks, nothing has changed.

Phone surgery and tell recwptionist that you are still in pain and there is a development of a new symptom that you need to tell the doctor. Ask for the doctor you have seen to call you back. Tell doctor about yellow poo, it is significant.

Bad news....my faecal calprotectin test has come back as "positive - abnormal". I am terrified. This rules out something more simple like IBS. It could now be anything from pancreatic or bowel cancer to something requiring an operation, hospital stay, long-term illness. I need more definitive answers.

My GP can't call me back now (got the result from the receptionist) but might be able to later today but then I may be at my hospital X ray appointment or on the school run. In any case, he's likely to sound cross, rushed and patronising - and then I've got 3 days across the Bank Holiday weekend to wait and worry and I may not even have been able to speak to my doctor by then.

I've emailed the private consultant's secretary yet again to ask when the next available private consultant appointment might be, as nothing is happening in the NHS about a follow-up with him there. However, I've been emailing her for almost a week now and she hasn't managed to speak to the consultant about my previous queries.

So even though I'm willing to pay - anything really at this point - I'm not getting anything done quick enough. I've even asked her to ask the consultant whether he could pass me on to a recommended colleague who could see me sooner but still no reply.

How am I going to manage this now, with the fear growing, feeling more ill and my DCs to protect from all this and care for across the Bank Hol three day weekend?

Thanks Confused. I have absolutely no one at all to talk to and am unlikely to be able to talk to a GP this afternoon, although I've given them my mobile number but may be out, driving to hospital or in hospital or at the DCs school.

I have to go out soon and shop for the weekend, go to my X ray and keep looking 'normal' when I feel anything but.

I know it's unreasonable but I'm feeling furious with my GP surgery as they first told me to call my own doctor back at 12.30pm and then when I did, they said actually he can't speak to you and will be in meetings and maybe another new doctor (who's never even met me and is newly qualified), might be able to talk to me but maybe not and maybe I could talk to someone at 5.45pm just before they close for 3 days - but again, maybe not. In any case, I'll be driving the DCs home from late stay after school by then.

I'm beyond desperate really, as it's been going on for so so long and my usual inner reserves and strength are now reaching/have reached depletion.

Thanks. Just got phoned by my GP who was quite nice - which worried me more. Unfortunately, the exact raised level of calprotectin is 215mg/kg and the normal adult level is under 50mg/kg. This indicates a lot of inflammation and probably leans towards ulcerative colitis/Crohn's disease or worse.

I feel sick with fear and how this is all going to affect my DCs? I don't have the kind of life where I can be ill or even take a few days off work, let alone be sick for protracted periods or in hospital. I don't think I can do my life if I'm on medication with side effects that make it difficult to manage day to day and we rely totally on my self-employed income.

I heard back from the private consultant's secretary too and she's going to make me a private appointment there for next Wednesday - the earliest he can do. It'll cost money but nothing is happening in the NHS and I need a proper diagnosis and answers as soon as possible.

We have 2 much much long awaited and saved up for family holidays in July that my DCs have been looking forward to all year. If we can't go on those, they'll be devastated. I know there are far more important things to worry about but it's that kind of specific concern that's coming to my mind right now - how all this will affect my DCs.

I have a friend who had a very bad and frightening bout of colitis that meant a hospital stay, but she has now been symptom free for well over a decade, so these things can flare up but then disappear again. Try not to get too worried, at least you are closer to a proper diagnosis (and therefore proper treatment) now. I understand you must be worn out from weeks of illness and struggling to cope alone, alongside the insidious worry of what could be causing your symptoms. I hope you get to talk to a GP today .
Where are you by the way?

Can I suggest that you look into health insurance, please. You haven't had a diagnosis yet, but even with a diagnosis it is worth looking into. That should then help if your job is affected etc. It can give peace of mind.

Hope that the x ray appointment and school run goes well. Don't panic, as others say this is a good thing as a treatment plan can be sorted out and things will move forward.

Does your GP do home visits, because that would be a good idea! Or perhaps a practice nurse to take bloods at home (I know, probably unlikely but worth asking before you make the journey there for any more blood tests they might want to run, etc.)

Spinstar please try not to worry. As another poster said a high result from the faecal calprotectin test indicates inflammation in the bowel & is usually caused by Crohn's or Ulcerative Colitis. Both are treatable with medication & it is possible to live 'normally' & well with IBD. I know some people suffer more than others & for the last year I've been one of them but there are different types of each disease. As I've said before my fc result last Oct showed severe inflammation (1800 +) & I'm now classed as being in remission, although it's taken surgery to get me there as I have a complex form of Crohn's.

Please keep on at your GP for the referral to a GI consultant & colonoscopy. Drs are there to keep us well & should be helping you not making you feel like a nuisance. With regards to your flu like symptoms, when I had my first major flare up I felt unwell - fever, aches & pains & occasional dizziness. I think it's common with IBD to feel this way.

Please be kind to yourself & try to rest as much as possible & I really hope you get some answers soon. Please let us know how you're doing. Take care

Thanks everyone. just back from hospital (like Oxford Circus on a busy Monday, at the X ray department!) and school run. The private consultant's secretary has got me an appointment with him to talk about what next - for next Wednesday and I'm going to ask if it might be possible for him to fast track me in the NHS but I think more likely that I'll have to pay for a private colonoscopy and CT scan but would then not have the funds to carry on privately if I need an operation or medication.

Absolutely no idea what to do with the DCs if I need to be away from home for any length of time. But I'll have to look at that when it's time.

In the meantime, those of you with experience of IBD, should I just carry on eating my bland diet and trying to rest or should I be pushing through the symptoms and doing various urgent stuff? For example, I've not even vacuumed a floor in the entire house for about 2 months now and done no tidying up at all. All I've managed to do -alongside work, is shop and cook for the DCs and do the laundry - nothing else. The house is too cluttered and dirty to get in cleaners....I guess it's silly to be worrying about stuff like this right now but I'm thinking about the shame I'll feel if anyone else comes into our house to take care of the DCs - and how awful it all looks.

Is it a bad idea to push against the pain and symptoms, with as yet untreated IBD - and grit my teeth and get on with stuff? That's always been my normal approach to life when I've been ill before but this time, I'm not sure if it'll make me more sick or will be helpful to move around a bit?

Spin I would think that they will fast track you now, which would avoid you spending all your savings. Does your GP know that you have no-one to help you at all and are struggling? As it might help with fast tracking.

SirVix, the GP wouldn't ever have time to get to the point of discussing my personal circumstances even though he ought to know, I suppose, as he's known me 25 yrs. I've rarely met him in all that time as I've been very well.

I will bring this up with the consultant though, as I discuss the situation with him on Wednesday. It really is the worst part of it, knowing I'm all the DCs have and that they rely only on me and needing to be there for them.

Nickers - it's very very very helpful to hear you say your friend lives a normal life now. I really need to hear this kind of thing.

Mrs Pinot, do you know any good books on IBD that have helped you and also do you know of any key medical texts on IBD? The more I read, the more I see that medicine hasn't yet really got a handle on this and no cure - only some medications that can help - but they all seem to have horrible side effects.

Why can't science discover something similar like they did with Helibactor Pylori - that antibiotics can 'cure' it and that there's a specific cause? I hate the idea of playing around with various steroids and immunosuppressants that make me ill in many other ways, in order to manage the symptoms of IBD.

I am still SO scared and probably won't sleep at all tonight. It's when I wake at 1.20am with awful stomach pain, urge to go to the loo and a racing heartbeat, out of deep, relaxing sleep, that the worst times occur for me these last 7 weeks. I feel even more alone in the dead of night.

I have been lurking Spinstar as everyone else seems to be talking a lot of sense. For reliable advice about IBD try Crohns and Colitis UK.

I have a comment about your GP. He may have 'known' you for 25 years but does he really know you? Especially if you haven't had need to go for 10 years. I remember you said that for several reasons you can't change GP but I'm struggling to think of any (unimaginative I know) that wouldn't be worth overcoming to get a Dr who will listen and communicate.

Good luck on Wednesday.

I've read this threat with interest as I could have written your post & bananaramadramallama although my symptoms have been gradually getting worse over the past 8 years.

I have been in such severe pain I've gone to A&E with suspected appendicitis.

I've finally got a GP to refer for exclusionary allergy testing but I had to push and I feel like a crazy lady. However, I don't think going to the loo 20 times a day and through the night and throwing up stomach acid is normal.

I hope you get the treatment you need.

hi OP...one thing i will add is that by jumping between nhs and private gp it is possibly not helping. I know you feel you need to do this but sometimes it can be too many cooks spoil the broth type thing.

You have NO NEED to go privately, you fulfill the two week wait criteria on altered bowel habits > 6 weeks and weight loss to be referred on the NHS 2 week wait rule. I have no idea what your GP is doing, I am stunned....i know this is hard, especially as you are scared but RING your gp surgery at 8 am tuesday when they open and ask for appt that day, if they say they are full say ' i want to speak to the duty doctor' . They have to have one on, and it maybe a call back not an appointment, but thats ok, you need to then be available for the call back, and then say calmly and firmly that you have had abnormal blood tests , you have had altered bowel habits for greater than 6 weeks, you have had xxxkg weight loss and you wish to be referred to colorectal surgeon under the 2 week wait rule . Do not take no for an answer....

best of luck and PM me if you need more help.
It is tricky to for doctors when patients are having some investigations done in one place, some in another etc.

Victoria Derbyshire has written a guest post on here very recently about how she has controlled her colitis with diet, with amazing results. Might be worth looking it up?