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"

You have to find the humour in it don't you. I remember being given the number for my microbiologist as my GP said he could answer my questions better, poor chap was so shy, I think he spent all day talking to germs and didn't know what to say to a real human.

I expect the courier has an insulated box. It should be alright for a couple of hours.
Not sure what SENS means but someone might know...I hope you get somewhere soon in terms of a Dx. It can make a person very suggestible, not knowing quite what is going on. Huge sympathy

Thanks NoPsip. This is all bizarre and now worse again today. I feel much less able to eat again, although I'm trying to have some white fish - and the dizzy lightheaded feeling is far worse, even though I did manage to eat quite a lot yesterday and drink tons of water.

I'm finding it hard to string a sentence together coherently and not sure I was safe to drive this morning when I took the DCs out to an appointment. Upper abdominal pain under ribs at both sides is back as is lower down generalised pain. Feel more sick again.

Took the 'stool' sample to the doctors and spoke to him briefly too - although not a proper appointment. It was a relief that he said there was nothing I was telling him that worried him unduly - when I mentioned the new symptoms of dizziness. He said maybe I was temporarily hypoglycaemic. He didn't say why that would be and it can't be because I'm not eating enough as yesterday I managed to eat quite a lot.

Hypoglycaemia is a symptom of pancreatic cancer. Wish I didn't know that. Will keep trying to eat and drink just to get the energy levels OK but it seems to make the pain worse and the dizziness far worse too.

Stool sample results should be back within about 2 to 3 days. I'm hoping against hope that there's a nasty bacteria or something in there that is cureable and specific. If they find nothing, it's on to a colonoscopy and then don't know.

I'm supposed to be back at work soon and there's not way I could work at the moment at all. I'm barely doing the essentials for the children and then resting the rest of the time. All very worrying and increasingly so as time goes on and I'm not getting better. I've always got better from everything I've ever had before. Nothing has daunted me or stopped my normal life. This is very different.

Hi Spinstar. Sorry you are going through this. I know what it's like waiting and worrying, as I recently experienced similar. I just wanted to share my experience in the hope that it might help a little. I was recently referred for a colonoscopy and became completely convinced I had colon cancer and got myself into a frenzy of worry. My symptoms (abdominal pain, diarrhea) suddenly got a lot worse and I had a host of other symptoms. I was shivering, sweating, dizzy, unable to sleep, the pain got much worse and radiating all around my back, and had much worse diarrhea. I then had the colonoscopy and it was clear. I am now feeling more relaxed about my health and back to how I was before, i.e. I have the pain symptom, still not 100% sure what it is (have been referred for a 2nd opinion), but the pain is back to a moderate level, and I am not feeling really really ill. I think quite a lot of what happened when the symptoms worsened was purely down to anxiety and my point is, that it illustrates just how ill you can get due to anxiety, especially thinking about something as frightening as cancer. So I wonder if it is possible you are feeling worse for the same reason? Hope you can get some reassurance soon.

Hi Spinstar

Your symptoms sound very similar to mine. I thought I had caught a stomach bug from my daughter as I had diarrhea and stomach cramps but I was vomiting as well. Not being one to go to the doctors! I put off going for 5 weeks by which stage I was spending most of my time asleep as I was eating a bare minimum.

Finally I plucked up courage to go to A&E (am in Sao Paulo so my insurance recommended a certain hospital and told me to go to A&E). I was admitted as an emergency - lot of fuss for a stomach bug or so I thought. I was diagnosed with colon cancer that was very close to blocking my bowel.

After an operation to remove the tumour which thankfully had not spread outside my bowel - the cancer is gone and life is back to normal, well apart from the 3 month CT scans to check I stay cancer free!

Even if it is something serious, you are doing the right thing by finding out what it is. In the UK, there are many charities that can provide support once you know what is going on. My dad was looked after really well by Macmillan.

Good luck and fingers crossed it is just some dreadful bug but don't lose hope if it turns out to be more serious - I am proof that you can survive.

OP you mention drinking a lot of water, how much exactly ? As too much can cause as many problems as too little. Try and keep to around a litre and a half to two litres a day.
re the coeliac thing. I don't truly know how suddenly it comes, or why. it never been explained to me whether one has it from birth or if it just becomes switched on at some point or either/both. It is auto immune, but can be there from birth as I have a coeliac friend and two or her dc are also coeliac. All i can say is that although I do come from an allergy ridden family, (and I have an allergy which I carry an epi-pen for), I had no symptoms of coeliac at all until I was in my late 30s and I was also having symptoms of thryroid disfunction which was later diagnosed as Hashimotos. However I have an odd sign, symetrical pitting on certain teeth, that is a sign of coeliac, and as I've had those teeth since I was about seven then maybe I did have issues with gluten but no symptoms. Coeliac is often not diagnosed until someone's fifties, and can be wreaking havoc on the gut without any outward signs in some people. The blood test is not definitive, as it isn't 100% accurate, but it is a starting point.
Anyway I really hope that you get answers this week.

Thanks for the support. F1 I'm glad to hear you're OK now and you've been through such a lot. Good to know it's possible to get through it.

I don't think I'm drinking too much water SirVix - just more than I usually do - maybe 1.5 litres a day I think.

Got more definable pain in my left side, especially after eating and I generally feel much worse within one hour of eating - and much more light-headed. No diarrhoea - just hard pellet like stools! Why would I also have a persistent dry cough too?

I'm trying not to panic or think about it too much but it's difficult when I feel so ill and so unlike my normal self and don't seem to be getting any better. Other than the basic support for the DCs, I'm not really able to do anything else at all now.

Hi Spinstar, when I hit perimenpause I had a lot of this type of stuff going on. I got gastritis (stomach inflamation) so often had upper abdom pain (mostly left-sided) if my stomach was empty and after eating and felt full really quickly. Also some nights I would get cyclical cramping in stomach, which occasionally resulted in fainting. I also felt lightheaded and sick during the day - exactly like food poisoning only without the throwing up or diarrhea. I also got a kind of panicked feeling like I needed to leave a situation (like if I was waiting in the car for the kids) or I'd faint or throw up. It was worse in the afternoons, and the early hours of the morning not sure it was because my stomach was empty and the stomach acid came out to play. Remember that pregnancy hormones can cause people to become really really ill, well so too can the hormonal shifts in peri-menopause. You don't have nausea and you are able to eat. You are not vomiting uncontrollably. The diarrhea (can't spell it) may be unrelated to the lightheadness and the cough could just be a passing virus. They don't necessarily all add up to one big Terrible Disaster for you and your kids. You only had 5 bouts in 16 weeks. Anxiety was a factor for me because my mind couldn't make sense of my symptoms and I am someone who always has to know the reasons for everything. If you had health anxiety you might not necessarily know you had it...you would just keep thinking any symptom you have must mean something really really bad, that's what it is. I went to the doctor loads of times during this and got tested for everything under the sun. I can't believe your doc suggested internal bleeding. Having said that people with stomach ulcers, they often bleed and like it's not an emergency situation. Keep telling yourself the amount of fear in your mind is not proportional to the actual size of the danger you are in. Big fear does not mean Big danger, it just means Big fear.
Have you tried taking a Motilium and a couple of Paracetamol when you feel bad? That used to help me a lot. In 20mins I'd be back to normal.
It's all settled down and gone away now that my periods have packed up and gone completely (woo hoo!). I still take omeprazole daily for the excess stomach acid but the other weird symptoms have gone away.
You sound like a great mum who has to carry a considerable burden of responsibility alone. Wish you the best of luck with it and keep us posted!

What I meant to say was I can't believe your doctor made reference to internal bleeding without explaining exactly what he/she meant. They should know that would scare the daylights of a non-medical person.

I completely agree with Sadie on strange unexpected peri-meno stuff. I get nausea, particularly first thing, I had six months of faint feelings and horrible sudden anxiety episodes until I started taking natural progesterone. ( I am the same age as you OP). I also agree that while sometimes GPs fail to take a holistic approach when they need to, also sometimes one does just have several unconnected things going on. Years ago we would probably not have linked them in any way unless a GP did, but with the internet it seems that all sorts of random symtoms can add up to various ghastly scenarios and it is impossible to not be scared witless at times by that.

Sadie, I wondered if it might be perimenopausal but I've been perimenopausal for about 2 years and never had any similar symptoms to this nor am I prone to panic or anxiety. I've escaped most of the worst perimeno symptoms so far and still have fairly regular periods too.

I've always eaten anything I wanted to eat with no abdominal issues at all. Never got headaches. Virtually never feel sick. This is completely unusual for me and that's what's making me feel concerned.

I felt even worse this morning - really nauseous, faint/lightheaded, headache, not quite 'with it'. It's 25 days since these current stomach symptoms began and they've got worse and worse, except that I'm no longer getting diarrhoea.

I telephoned the NHS GP and asked for the next appointment which is just with a locum and not till next Tuesday.

I then emailed the private GP (the one who's been dealing with all this) asking to see him or any colleague today as I'm getting worse and now barely able to do the basic maintenance tasks for the DCs. That was about 5 hours ago and he's not replied. He may be waiting for the stool sample results that might be back tonight or tomorrow morning.

I feel increasingly weak, have now lost half a stone in weight in only ten days and get headaches and worse stomach pain after eating but also all symptoms are worse about an hour after getting up in the morning. I'm dropping off to sleep if I'm sitting down - which is again very very unlike me. It's almost like I've been doped! My normal self is energetic, calm, focused, happy and awake!

My latest period has almost finished and I'd hope that things might get better at that point, if it were hormone related - but the haven't. I feel like an invalid really and it's very annoying as my DCs school holidays are almost over. I took time off work specially to do lots of fun things with them and all I've done is watch films with them, make basic microwave meals and rest, whilst feeling horribly ill.

I absolutely have to be better by the end of next week for work and have already taken an unusually long holiday this Easter, as we had some good stuff planned. I can't go on like this much longer really as my life relies on me being completely healthy and well.

I don't want to scare you Spinstar but the weight loss is a serious sign, please ring the out of hours doctor or 111 as it is one of the signs of cancer.

I waited 5 weeks to see the doctor so know how easy it is to get used to the symptoms and not want to bother a doctor. Any change in bowel motions, loss of weight, tiredness, stomach pains - all are on the symptom check list

www.bowelcanceruk.org.uk/understanding-bowel-cancer/signs-symptoms/

Spin you do sound really very unwell. I would probably go to A+E in your place, but if you can't or really don't want to, then call your GP in the morning and insist on an emergency appointment. All surgeries have some spaces for emergencies, call at 8.30 in the morning and they will fit you in. Or ask for a house call. (Or even just turn up first thing in the morning). If you are too ill and weak to insist then call a friend and get her/him to ring for you. Do not leave it until after the weekend, there is nothing at all to be gained by waiting about now, as you are getting worse. The only sensible thing is to be fully checked out asap. You could print out your posts on here, if you need to remember symptoms etc. I really am worrying about you. A+E is a nightmare on a weekend and it is harder to get properly checked over. So see someone tomorrow. Please.

I've been in your position. The key is getting that colonoscopy asap. That will rule in or out multiple conditions. The minute the stool sample results come back, hassle the GP for an urgent referral and you may even try finding out whether you can call hospital for cancellation spots. Several cases of crohns in our family but also others with similar symptoms put down to 'ibs'. As you may start to learn, the so-called chronic diseases might well be caused by unknown pathogens.

Hi OP,

I don't like to disagree with the voice of experience but half a stone is often lost at the start of a diet as it's simply a loss of water that was being retained - so this isn't an alarming amount of weight to lose if you are not eating normally. I have had this sort of weight loss many times when I cut calories, in my youth (!) and got all excited thinking I would lose a stone in a fortnight but really, it doesn't happen.

You aren't having diarrhoea any more which is good. You aren't having any bleeding which is good.

All of your other symptoms can be explained by being worried, or just plain exhausted, and are pretty non specific. In a situation like this (and yes, I have been in it myself, when I was much younger) the doctors will be inclined to say there's nothing they can do because it could all point to something or nothing.

So you have to ask for specific tests that will rule out the most scary options, once you have ruled those out, you will feel less scared and can look at it all more clearly.

In my case there was nothing wrong with me yet I had dizziness, nausea, worried about each and every bowel movement and kept messing about with what I was eating in the hope of controlling how I felt.

In the end nothing worked and it was only when I stopped obsessing about it and did something out of my comfort zone, which I was convinced would actually kill me in the state I was in, that I realised I didn't feel that bad after all, and things normalised. It was a bit like steering a car while terrified of ice on the road - you tense up, and it goes all wrong.

I am not trying to patronise you or say that you are having psychosomatic symptoms but just giving another perspective. It COULD be this. It also will prepare you for what the doctors are most likely thinking. It is their duty to rule out more serious stuff and that's what they will try to do, but without any particularly worrying or 'red flag' symptoms, you may face some resistance once that stage is completed.

I really hope that you are alright and that these things are stress related, but obviously, it is important to rule out the dangerous things, and that should probably help you to worry less once it's done.

Good luck I know how horrible it is to feel like that, no matter the cause.

Thanks. Have just got the stool sample results which all came back as normal and were testing for things like salmonella/shigella/campylobacter/e.coli. I'd really hoped something v specific would be found to explain it all and to then get some treatment right away - but no.

The doctor says he's contacting the GI consultant today (has already done so) and will try to get me a quick colonoscopy.

Last night, before hearing all this, I noticed I felt less sick and tried to eat more. Not sure if I should be trying to eat or not. Despite being really ill, I've still done the basic tasks for the DCs and even took them to the hairdressers a few days ago before I was feeling so unwell. But being out and about actually made the physical symptoms worse. I've also distracted myself with watching lots of films with the DCs but even when I'm not thinking about feeling ill, I'm still feeling ill, whereas with other ordinary illnesses, it usually works to push myself a bit or be distracted.

However, it's reassuring that I've had no blood in my stools, have currently stopped having diarrhoea and am feeling less 'hypoglycaemic'. Even if I have something nasty, presumably it can't be at an advanced stage if I'm not bleeding inside.

Could the symptoms I've been describing over the last few days even just be the worst ever 'flu virus? These last few weeks all began with a nasty proper 'flu/chest infection virus that was probably the second worst I've ever had in my life (although the worst ever, didn't result in all these current symptoms) - and I only took 4 days off work and pushed myself to go back. But then I always manage to keep going. So it's really unprecedented that it's been weeks now that I've been ill and these abdominal symptoms are also unheard of for me, until now.

Oh great news about the sample being clear. That's fantastic.

I wonder if it may be some sort of post viral syndrome? I have heard of things like that before but never really looked into it.

It sounds miserable to feel so under the weather. I am glad if there are some small signs of improvement x

Thanks NoPsip. I can't believe how ill I still feel but it's now a lot of massive chest pain and upper back pain and a rapidly developing chesty cough - again! That's how all of this started back in mid March and I've not been well since. I wonder if on top of whatever else is going on, I've had pneumonia?

Still no answers and still feel more ill than I've ever felt in my life. However, I'm able to eat more and have not lost anymore weight - it stabilised for the first time today - so that's much better as I'm sure eating will make me stronger.

Not sure if I've got the symptoms of gallstones, Confused but I'm open to consider anything. Don't think it's a post viral thing as I don't think the horrible abdominal pain and diarrhoea and feeling sick and dizzy would manifest as badly if it were that - but again, I can't be sure.

I'm beginning to think I need a zimmer frame and this is from someone who normally does lots and lots of 'man-sized' manual labour/DIY in the home with upper body strength greater than many men I've known! Now I feel like you could blow me over and I'd not get up.

Spinstar, sorry you are no better. I have had a recent health scare, and I have been googling like mad - I realise it's not always helpful, but I wonder if this symptom checker might give you any clues?

So sorry you are feeling so poorly - I think it's more difficult for people who enjoy robust health when they become ill, as it is something very unfamiliar. I think you need to see the NHS GP as soon as you can - think you have an apt on Tuesday. Thing with the private GP he is only going to contact you if you pay and it sounds like he worried you by suggesting what it might be. Not sure if he can push you up the waiting list for colonoscopy or not. A GP will refer you to a "rapid access clinic" if cancer is suspected. I've been referred 3 times for different things, but no cancer at all.

I know you don't like the idea of health anxiety and I don't think people mean you are someone who worries about every little niggle, as you're clearly not, but because you are feeling so poorly and it's so unusual I think it's easy to catastrophise (sp?) and get anxious what it might be and that of course makes matters worse, and you get symptoms of anxiety as well as other symptoms. I don't know if you are googling but I suspect you might be.....please don't as Dr Google is not your friend - I know this from bitter experience. There are 101 reasons for our symptoms and a good GP will run some tests to rule out anything serious and get a diagnosis.

What age are your children - are they very young as you are naturally concerned about their care, but if they are older, then can they do things for themselves sometimes. Do you have any RL support - family/friends who can support you while you are waiting for appointments.

I thought the abdominal pain and symptoms were getting better but I've just spent an entire night woken by the same stuff - bad upper left stomach pain, feeling very dizzy even whilst lying down resting, nausea and a racing heartbeat the entire night. Normally my heartbeat slows right down at night. I got one lovely hour of sleep and then woke with the abdominal pain and have been awake the rest of the entire night.

My previous experience of being ill is that there's a beginning, a middle and an end but this seems to have no end.

Darthsloth, I'm willing to pay whatever I can to have some tests done as soon as I can but even the private GI consultant appointment isn't until Thursday - I think - although I've had no confirmation of that at all - just the private GP I saw telling me, on the phone, that this would be the case. That's just an initial chat - not actual tests.

I've also got the NHS GP appointment tomorrow morning but not sure how I'm going to get there as I'd planned to drive (quite a long way away and also involving a walk after tackling massive public car park) but may need to get a taxi and I'm almost out of cash.

DCs are more or less looking after themselves except for me making them the most basic meals and doing their laundry but they're too young to be left alone for a night or more. No RL support locally - so no one else really knows about what's going on and the fact that I've been practically bed bound for two weeks or so now. DCs will be back at school on Wednesday and I'll have to drive them there and back (too far for them to get themselves there) and depending on how things go, I'll let the school know a bit about what's going on.

I'm supposed to be back at work very soon and as I've taken off far more 'holiday' than I usually do, I really, really need to be back as otherwise we have no income (self-employed and rely totally on what I earn for all of us here).

Yes, I know I really, really shouldn't google but I did....and I seem to have loads of symptoms of ulcerative colitis - which is very worrying as it looks as if the treatment can be just as bad as the disease. But I know I mustn't think about this. I expect it could be months and months or even longer before I get any definitive answers. In the meantime, nor sure how to get on with anything like a normal life.

It sounds like you need an upper g/i endoscopy just as much as a colonscopy. If you are going private, things can happen very quickly and you can be a bit more pushy maybe? I contacted my consultant directly and said I needed to be seen sooner and he managed to fit me in. I had an endoscopy / colonoscopy just a few days after the initial consultation.
Re. getting about. Can you use uber and pay by debit card? is there another parent at school who would give a lift to school for your DC, if you explained how ill you are?