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"

[SirVixofVixHall]

How are you today OP?

[BsshBosh]

to you OP. What a tough experience you're going through. I am so glad that you rised above your fears and went to the doctor. Yes, the wait is a grind but the colonoscopy should give you some answers and then a treatment plan. Irritable bowel diseases eg colitis are treatable and if they find any pre-cancerous polyps then they can be excised during the colonoscopy itself. Even if they find some cancer, caught early it's very treatable even curable.

Do you have any friends you can start confiding in? They will be invaluable for helping out with the DC as well as being a emotional support for you.

[Spinstar]

SirVix and Bssh, many thanks for your support. I picked up a bit yesterday and managed to eat a bit and my temperature returned to normal. I had a better night too but woke with a nasty headache but the abdominal pain wasn't so bad.

So I forced myself to eat scrambled eggs for breakfast and then took one of the DCs out to the supermarket to buy essential foods as I had nothing left for them in the house and the first home delivery isn't until Monday.

Unfortunately, whilst in the supermarket, I thought I was going to faint and also got pretty desperate for the loo! Managed to tough it out but feel more ill now and also seem to have developed a weird, dry cough that makes my chest feels sore and hurts when I take a deep breath. Weird. Still hoping this might mean I've just got a normal but nasty and unusual type of virus.

Didn't 'need' the loo after all and am completely unused to this sense of urgent 'need to go' as before all this, I only went maybe once every 2 to 3 days. Abdomen just feels strange and like I can feel cold liquid inside and trying not to imagine this as internal bleeding - but then do keep thinking of this. Hoping my initial blood test results will come back soon and that would indicate any internal bleeding.

Not got any back pain, SirVix and all seems fine with the waterworks and I'm drinking much more than normal to try to rehydrate myself as I'm finding it so hard to eat. Not having an appetite is the most unusual thing of all for me. I've never ever lost my appetite for food before. I'm even not wanting crisps or chocolate!

Thank you Bssh for telling me that cancer caught early is treatable and even cureable. I really need to hear this. The DCs keep talking about what we'll be doing later this year and even this Easter and I can't say to them that maybe we won't and maybe everything might change but it feels hard to be thinking that and then acting normal for them.

I know you shouldn't google symptoms but if there anything else this might be other than a chronic bowel illness or cancer? Are there any obscure viruses or bacterial infections out there that would present like this - ie NOT constant diarrhoea and vomiting - but alternating sense of urgent need to go and then sometimes diarrhoea and sometimes small hard pellets and now, increasing nausea, headache and cough, plus weight loss?

[cathyandclaire]

My DH has Crohn's and has been very well for a while so not always bad news, he has only ever had two days off work. Before he was diagnosed he found that active yoghurt drinks like Yakult and Actimel really helped to settle his symptoms (he's since read that there is research evidence to back up this) so maybe worth trying as they're unlikely to do harm.
Other things that could cause bowel symptoms like your's would include diverticulitis, so don't panic.

[Boomf]

I'd see the doctor and discuss Health Anxiety with him/her because your posts indicate you may have that along with something entirely treatable.

[Silvercatowner]

I agree with the health anxiety. I get terrible stomach cramps when I am stressed - it is quite debilitating.

[Changeasgoodas]

Sounds like you are feeling awful. I do agree on the health anxiety, your imagination sounds very overactive, you cannot feel internal bleeding in the way you describe for instance. I don't think it is at all useful to hear stories of people with IBD as you have no idea if you have it other than knowing that anything that is caught early is usually easier to treat so you are doing the right thing in getting the correct tests. Even if you did have it, Crohn's and colitis are quite different in some respects so you'd just be confusing yourself for nothing at the moment.

Did the stool tests include a fecal calprotectin test? That is the fast track to knowing if there is inflammation in the bowel

[Spinstar]

I'm probably the last person to get health anxiety and have rarely ever been to my GP, tend to ignore most illnesses and not worry at all. I'm almost never ill enough to take any time off work and am very good at ignoring pain, as long as I know there's not underlying problem that needs attending to. The reason I'm worried now is because this is all completely out of the ordinary for me - being this ill and for this long and with these kinds of symptoms. I feel extraordinarily ill for me and getting weaker and paler.

Have been eating some basic bio yoghurt but not had the stuff you described Cathy. It's actually v helpful if people suggest things that are manageable and cureable as I can cope with a huge amount of feeling ill and physical pain if I know it's not life-threatening. Just need to know, I guess but it'll be a while before I do.

Not even had the stool sample yet but supposed to produce this around midday on Tuesday and then rush it in to the GPs (hope I can do this!). Then will need to wait a few days for the result. Then, depending on the result, will need to wait around 2 weeks for colonoscopy.

All that would be more manageable if I didn't keep feeling worse on and off and so faint, sick and pale and unable to eat again now. Been just sitting around now - which again is v v unlike me and yet I feel really unwell and cold and faint. I can again manage this if it's just that the symptoms come and go.

It's not knowing whether any of the small amount of food I've eaten has been absorbed at all or whether I'm slowly losing energy as not getting anything from food. Don't want to faint in front of the DCs who are getting really fed up with me retreating to bed or sitting still.

I will try not to think at all and perhaps watch something with the DCs and hope I pick up again.

[Boomf]

Are your children teenagers? If so then they need to fend for themselves for a little while in terms of leaving you to rest and amusing themselves.

Are you the poster who had all the countless issues with a dog btw?

Just make an appointment to see your own doctor and take it from there

[RubySparks]

Just to say ask to be tested for coeliac too as this should be ruled out before IBS diagnosed. In addition you should get B12 checked too especially if you don't eat meat - low B12 can cause diarrhoea, headache, fatigue and dizziness.

[2madboys]

I was also going to say make sure you get a coeliac test. You mentioned having toast and marmite before one of the attacks. Both of these would make my coeliac DH ill. DO NOT avoid gluten before you're tested though, as it could lead to a false negative if they test. DH had symptoms for years, looking back. We thought his upset stomachs were caused by spicy food, eg. Curry or pizza. Now he eats gf pizza and avoids naan bread with with his curry and is fine.

[morningsarepants]

Please see your GP as your symptoms do need investigating. At your age and with new symptoms the GP should not diagnose IBS without investigating first.

[Spinstar]

Blood tests have come back normal today - so obviously not bleeding internally. So that's a relief. To some posters above saying I should see a GP - I saw one a few days ago and things have gone from there and will take in a stool sample on Tuesday and then have a colonoscopy a could of weeks after that so I'm already in the system.

No dog or twins by the way! Must be muddling me with someone else - and no anxiety either - except in these last few days when I've felt ill for so long and the GP said I should be 'fast-tracked' - which is bound to make even the most phlegmatic of us get worried. Thanks for the concern however. I'm usually very happily busy, strong and active - so all this is very unsual for me.

Never had any suggesting of coeliacs before nor any issue throughout my life with gluten but it's worth mentioning to the doctor. I've lived off wholefoods and mostly a vegetarian diet all my life and never had any issue like this before nor ever been ill before.

It's a relief to know my blood is healthy but not sure if that rules anything out other than internal bleeding?

[wannabestressfree]

If your blood tests are normal it doesn't necessary rule things out but makes them less likely. If my crohns was flaring it would show in the markers in my blood, b12 etc. Also serious Illnesses generally show up.
I am wondering if it is 'just' the really awful virus that's going round at the mo. I have had it and it comes and go making you feel terrible. I am saying 'just' as it is really nasty :(

[SirVixofVixHall]

How have you felt today? Hope it hasn't been too dreadful. The bank holiday will be over soon and you will have given your sample etc, so hopefully you'll be closer to finding out what is wrong. It could be just a nasty bug, salmonella or campylobacter for instance. Anyway I really hope it gets identified and sorted out quickly.

[Spinstar]

Thanks for asking SirVix. Also, Wannabe and SirVix, it's v helpful to consider this just might be a simply nasty bug thing. Yesterday, for a few hours i thought I was starting to feel better but after eating, felt absolutely terrible again - with a thumping headache, dizzy, more abdominal pain and feeling sick. I've forced myself to keep eating, however and drinking lots of water - far far more than usual, so I know I'm not dehydrated.

The doctor emailed the blood tests results info and there were actually loads of results in the abnormal range but he said not to worry about those, as the sample can 'go off' in transit. He said i was definiteley not anaemic, which had been his main concern.

The 'abnormal' ones were: high MCV, high sodium, high potassium, low bicarbonate, high LDH, high phosphate, slightly high cholesterol (I knew this already) and low transferrin saturation - whatever all that means.

I think the salts /basic electrolytes are the ones that 'go off; in transit so may not be a proper result. Does anyone know if any of the other abnormal ones would make you think it's pointing towards anything - or not?

I emailed my current deterioration symptoms to the GP and he hasn't gone all panicky or replied, so I assume that he isn't thinking I need to be seen again imminently. The next thing is to try to produce a stool sample at exactly the right time tomorrow! How do you time something like that?

This whole thing is really difficult for the DCs as our Easter plans have had to change dramatically and this episode has been going on now - and getting worse - since the day before Mother's Day.

[RubySparks]

Can you ask to be tested for coeliac? I used to get terrible cold/flu that would turn into chest infection and last weeks before I went gluten free. Also knowing 12 level would be useful - it has to be very low before nhs will treat but you can take supplements yourself quite easily (methyl cobalamin and ones you hold in your mouth).

[Spinstar]

Thanks Ruby. I presume they'll be testing for coeliac's via the stool sample - or maybe not?

Once again, after eating, I'm now getting thundering headache and feel very very dizzy. I never ever get headaches either nor feel dizzy and I'm eating the best and blandest foods I can think of - chicken on rice cakes and scrambled egg. Surely that kind of food shouldn't trigger a headache and dizziness?

I was feeling really relaxed and calm when I was eating and afterwards too, as I was sitting in the sun and thinking about all the things I plan to do when this is over. Now I'm wondering if it is going to be over at all.

Ironically, the abdominal symptoms have calmed down a bit - just still getting moderate level abdominal pain. I'm sick of having to pay attention to my body and these symptoms which are preventing me getting on with my life. I'm more used to being able to assume my health is fine and largely not dwelling on physical symptoms or discomfort at all.

[SirVixofVixHall]

Coeliac is a blood test, not a stool test, so they may not have tested for it. I am almost certainly coeliac but tests don't show it up now as I don't eat gluten, I should have been tested before stopping, but I gave it up intending to just have a few weeks break from it, as I'd found that helpful in the past, and my reaction on trying it again was much like your symptoms now, so i can't bear to eat it for the 8 weeks it would take to be able to get a test. Ask to be tested, as it can hit relatively quickly (I ate gluten happily for years, but I have a thyroid problem that can be connected with coeliac and as my thyroid function decreased I developed more and more obvious problems with gluten).
Headache and dizziness could be all kinds of things, hormonal shifts, reaction to a foodstuff, weight loss, many other things. I hppe that this week and next bring you some proper diagnosis so that you can start to feel better, as it all sounds horrendous. .

[NoPsipsinaChocolateOrange]

WRT the sample - try and do it within about half a day of when it's due, and keep it wrapped in a couple of plastic bags or a container in the fridge (yuk I know, but some bacteria die at room temp so you get a false negative).

Then take it straight to the pathology lab at the hospital if you can. The GP's surgery is not necessarily going to have a fridge, so best if you can cut out the middle man as it were.

You will want to go and collect your path form from the GP then take sample with form to the hospital.

Good luck. The only time I had that urgency to go thing (it's called tenesmus) was when I had c-diff. But that involved bleeding and so on, I think you would know if it were that. Not ruling it out though.

[NoPsipsinaChocolateOrange]

Sorry that sounds wrong - I mean, keep the actual little pot in a couple of bags in the fridge, or in another container. Not the poo itself.

[Spinstar]

NoPsip, the sample has to be motorcycle couriered to the nearest city apparently, once I drop it off at the doctor's. That's about a 1 hr 20 mins motorcycle drive away. The doctor said I needed to 'produce' it as soon after midday as possible and then drop it off at his office where he'd get it later and pass on to his courier service! If I wasn't so ill, I'd find the whole thing hilarious actually, that my precious poo will be couriered that far away!

I hope the sample is still viable therefore. I know that sometimes people need two or three samples before something might be detected and in this case, they're just going to do one and then if nothing shows up indicating a bacteria or protozoa etc, I'll go for a colonoscopy within the next 2 to 3 weeks.

The GP gave me a sample bottle and his note and on this he's crossed everything out and put, "For microscopy and SENS" whatever that means.

SirVix, with coeliac's disease, how can people just suddenly develop this? I've spent my life eating loads of gluten based foods with no stomach issues or allergy issues at all. What would suddenly turn me into a gluten intolerant person? I'm just not the sort of person who ever had allergies/asthma/intolerances etc etc and have basically eaten anything and everything throughout my life - and in the last 30 years mostly vegetarian wholefoods - with no problems at all.

My crashingly awful sudden headache and dizziness earlier was after eating gluten free foods.

If I do have a nasty bowel disorder, including the worst possibility, that would be after a lifetime of above average healthy eating. I've not drunk alcohol for about 17 years. Never smoked. Just wish I knew what was going on.