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"

Spinstar I'm so sorry you're feeling so ill & I understand the questions you're asking, but I think that until you get a diagnosis or even an indication of what's wrong its not going to be easy to get answers. Chronic illness is a bugger as it affects everyone differently and IBD can be very changeable - I always say I can experience every symptom in 24 hours & go from feeling great when I get up, to tired & ill by lunchtime & then I can't sleep when I get to bed. I also get backache as the inflammation from the bowel also affects the joint at the bottom of my back. That's how I knew I was starting with a flare last July cos my back ached when I sat for too long at my desk in work.

I know its hard to put into words how you feel & explaining to children is very difficult when they're used to seeing Mum well & managing everything. My DS was 8 when I was first diagnosed & he struggled so much especially as I spent nearly 3 weeks in hospital & he was shunted between home, my Mums & sisters so DH could go to work & DS could get to school every day. He's 12 now & I still try to shield him from the worst of it & he doesn't come to my hospital appointments with me unless its impossible to avoid it & then I leave him outside while I talk to the Drs & get bloods taken. When I had my op he wanted to know exactly what they were going to do so I gave him a (very) watered down version as I knew he would worry if I told him too much & the same if I didn't tell him anything.

I hope your appointment goes ok tonight & you manage to get some answers. I still have my fingers crossed that all this has been a very bad tummy bug & can be treated easily. Please let us know how you get on & feel free to pm me anytime if I can be of any help. Take care

Again - many thanks everyone. I've just got my latest blood tests results back over the phone and everything there is NORMAL (ESR, ferritin, u/e, bone profile, folate, CRP, B12, urea, cholesterol, full blood count ESR.

So I assume that's a good sign? Would any of those results have to be abnormal for there to be further evidence of IBD or worse? or can you get normal results like that but still end up with IBD?

Not sure what to make of it all but hopefully will get more answers tonight.

With my limited knowledge -recently acquired - about IBD - would I be right in thinking that even if I have a form of this disease, it would be mild - or could this just be the start of worse things to come?

All that said, I'm sitting here with a pain in my upper guts, having only eaten one piece of bread with honey about 30 minutes ago and feeling 'flu-like still and really weak, with a headache.

What else could cause these very prominent but variable symptoms and a raised FCP level?

Stormtreader, it's good to know that meds have improved in recent times. It's just good to hear anyone else's experiences really and feel your support, which i do, even though we don't know each other in RL.

I'll post again if I can, after my appointment tonight.

Good luck tonight Spinstar - sorry I have nothing to offer in the way of advice but just thinking of you and everyone else who has a chronic or undiagnosed illness, it must be dreadfully hard

Its good that your bloods are normal. With IBD its common to have anaemia & low B12 due to bleeding in the colon. It's not unheard of to have a CRP level within the normal range while having a mild flare up but its one of those blood markers that is very sensitive. It's normal for it to be raised in cases of IBD, especially undiagnosed. If this helps reassure you my CRP was 238 when I was admitted with my bad flare & was up to 39 with a mild flare last year.

Normal blood test results is very reassuring. Also, just saw that your calprotectin was 215 which is elevated but not scarily so. I think it can go up to nearly 2000! It can be raised in IBS too, so please don't go diagnosing yourself just yet. Even if you do get an IBD dx, they can't always answer your questions because the course of each illness is so variable. They were horrified at what they saw on my colonoscopy but 18 months later, I am doing really well.

Take it easy.

The other diagnosis which springs to mind is "microscopic colitis" which is diagnosed by a biopsy. It can be a post infective thing where the bowel gets really inflamed. Usually controlled by steroids over a course of time. I do hope you get sorted soon. The delay is appalling.

I thought calprotectin levels had to go sky high if it might be something sinister e.g. 2500. calprotectin will not show if its just IBS.

No idea if it is this but have you looked up Functional Bowel Disorder? Ex has it, due to PTSD. A lot worse when he is stressed out. Can spend hours and hours on the loo with diarreah / constipation etc. Also terrible stomach cramping. Apparently his is caused by a lack of the right signals between his brain and his gut or something, exacerbated by stress. I think it's a nebulous diagnosis when they don't know exactly what's wrong.

I wouldn't underestimate the impact of stress on any such condition so whatever you do try to limit any stress.

Might be worth checking into that?

Just a note to say not everyone is a CRP responder. I've had serious IBD for over half my life, had 6 resections and reconstructions, but my CRP has never been raised!

Thinking about you, Spin.

I am not a CRP responder either.

Thanks everyone. Just back from consultant appointment. He was very nice but I don't know whether to be more worried or not now as he insisted my symptoms merited fast-tracking in the NHS and I should be seen there within 2 weeks. I said my GP had told me he himself couldn't refer me himself for this and the consultant was puzzled as he thought my GP would already have done so, following his letter to him. So there's been an unnecessary delay there.

So it looks as if I could have a colonoscopy and CT scan (and apparently some further tests) for free in the NHS actually sooner than paying privately. However what the consultant thinks and what actually happens in the NHS, given issues with communication and fitting people in and staffing levels etc etc, it's still possible that it won't happen as quickly as he thinks.

He did ask this time if anything stressful were happening in my life and I thought - here we go - the old 'could it be psychological' thing that I've seen happen time and again to others I know. I explained that until this 'illness' there was nothing at all different for me and I was happy, busy and in control of my life and even if I'd ever had moments of stress in the past, I've never had any symptoms like these.

He also thought I should get a thyroid test done because of the night sweats - but that doesn't seem related to digestive issues, I assume?

He said calprotectin levels are not really that useful and may indicate nothing - but then they find something - or indicate really high levels and nothing is found. He said the new 'normal' range now went up to 100, not 50 so my levels of 215 was only just over double ad not four times higher than normal. Again, I'm not sure whether this makes me more worried or not! I'm certainly stressed now, after 8 weeks of illness - but wasn't stressed at all before compared to any other time in my life.

I hope I get an appointment in the NHS soon. I'll see if my GP has one the referral when I see him on Friday. Not quite sure now why I'm seeing him again as I know all the latest results but I suppose I ought to keep that appointment and use it to push for the fast-track NHS referral.

Well at least you are getting somewhere. The normal blood results and this latest consultants consideration of the calprotectin levels are reassuring.
Wonder if it would be worth asking for a hormone levels test to check where you are at menopause-wise. Or at least ask the GP if you were starting the menopause would that be a contributory factor for the night sweats and some of the other feelings (the faint/getting weak/exhausted/nausea) getting mixed in with all this.
keep us posted anyway.

Def ask for a thyroid test as gluten sensitivity is often linked to thyroid issues and a lot of your symptoms could be related to gluten and thyroid. You would be surprised how many things can go wrong when you have a dodgy thyroid. Also your bloods are in range but what are the exact results of them in range is not the same as optimal. B12 is better over 500 but range is only around 280 same for iron in range is over over 15 but really you need at least over 25 but much better in the 50s.

Spinstar - sorry to say this but your GP sounds utterly useless. Keep on pushing and hang in there. It's slow and frustrating, but hopefully you are gradually progressing towards a diagnosis.

Thyroid should be ruled in or out. You'd expect overactive with sweating, and other symptoms like palpitations and anxiety. However, sometimes there can be odd symptoms and sometimes there are hypwrthtroud symptoms but tests reveal hypothyroidism.
So it is possible, and then the digestive problems could be a separate problem.

I'm hoping to see my blood test results and check whether there are any borderline one when I see the GP tomorrow. Yes, I'm a bit shocked too at how things have panned out in the NHS.

Just found out from the private consultant's secretary that she also works in the same capacity for him in the NHS - and she says she'll try to sort out an NHS 2 week fast track appointment for me - although she'd said the other day it was a 6 week wait minimum there - but maybe that was before he clarified that I should be fast-tracked?

This is all so utterly surreal - even thinking about things like thyroid testing and menopause. I've lives with perimenopausal symptoms - but v minor ones - for 2 years and I've lived for 51 years with virtually no input from the NHS at all -except having DCs - and suddenly every waking moment feels like it's all about health/illness life and death. I used to ignore my body - in a healthy, positive sense - ploughing on if I had a minor illness and distracting myself if I were in pain - and now I'm horribly focused on every single symptom and its meaning. I wasn't anxious before but i really am now.

I was asleep by 9.45pm last night but work at 12.30pm with racing heart, sweating and this time - worrying thoughts - and have been awake since then but am working today. It's all so very very unlike the me I've always been.

ELR, I tested negative for gluten intolerance/coeliac's BTW but am eating virtually no gluten now anyway and existing on rice, chicken, prawns and scrambled egg and drinking water - a massive change to my usual diet of the last 51 years!

Ah...I think you have to be eating gluten for an intolerance to be picked up by initial tests!
Maybe the new tests might pick it up a different way, if there are any others for that.

Come to think of it...my cousin was diagnosed with Celiacs a couple of years ago and went through a similar process as this. He really thought he had cancer.

Thyroid too can be picked up late in lifevafter living with it for ages. It can be incidental to something else and only found when raft of tests performed.

I've been following your thread as I've just today submitted a sample to be tested for calprotectin too, and if it shows signs of inflammation I'll also have to have a colonoscopy. I don't think you and I have the same thing as our symptoms are different, but I just wanted to post and say I know how hard the waiting is. It's difficult because your symptoms could be caused by so many different things. I really do hope you get some answers, and that they point towards something that is easily treatable. Thinking of you

OK. So I've just heard that I'm having the colonoscopy AND an endoscopy on the same day on 19th May. Blimey! I'm also going to get a CT scan soon in the NHS as well, so at least things are moving on.

I've asked about this up thread but I'm wondering if it's going to be agony to have both procedures without sedation - which is what will need to happen. Apparently, the consultant 'raised his eyebrows' when he heard that this was my intention as it can be 'uncomfortable' with the colonoscopy especially and (to quote the nurse I've just spoken to), "you can feel the camera moving around inside you".

I can manage 'uncomfortable' (I've done 12 hrs in labour having DC1 with not even gas and air) but can't do real 'pain'. I'm also aware that if they find something nasty on the way, I'm obviously going to become stressed/distressed and that might make me experience more pain.

However, I'll really want to be there for my DCs later that day, pick them up from school or at least be available to them and in sole charge, later on that day.

Has anyone else had a colonoscopy without sedation and found it quite all right?

you say you want to be there for DCs later, I think that's unrealistic!! My ex had a colonoscopy and I had to be there for him for 12 hours after. Get someone else to do the childcare, it's an invasive procedure and you're likely to need rest.

Also go for the sedation!!

Agree collecting them from school is unrealistic.

What time is your appointment? Expect there to be at least a few hours, especially with both procedures on one day.

I wouldn't do it without sedation. My mum and sister found their colonoscopies uncomfortable even with sedation (all my family had to be tested after my diagnosis). My sedation didn't work (that's unusual, don't worry!) and I didn't find it painful. So it varies. But personally I found my endoscopies worse than the colonoscopy. The first time my sedation didn't work again and the camera made me gag and I felt I couldn't breathe. More recent time, I was better sedated and it was much easier. It still wasn't pleasant, but bearable.

If you are sedated, you will need an adult with you for 24 hours afterwards. Is there anyone at all you could ask?

Even if you are not sedated, you will be uncomfortable afterwards, and may also feel quite shaken up. You probably shouldn't drive for a while. Could you get a taxi to and from the hospital, and could your children get a taxi home from school together? Or another parent drop them off?

But I'd really recommend sedation if there's any possibility at all of making it work.

Good that you're getting them on the NHS, I was going to post urging you not to pay for them as might need savings as a safety net later on.

Fingers crossed you get some answers on 19th

No experience without sedation. I think it's easier for the surgeon to get around those tricky bends if they are not worried about hurting you. But that's about them; you should do whatever is best for you.

BUT if you have sedation, you CAN be there for your kids afterwards. You won't be wiped out or anything. I think I cooked dinner for everyone. I was a bit spacey, but really totally normal. You can't drive a car. But otherwise you would be fine.