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 not sure if you saw my post above because I think we cross posted but honestly, it sounds like they're messing you around. I really don't understand why they need the letter from toue consultant, isn't your gp able to authorise the tests?and I can't understand why your consultant/their secretary isn't responding to you sooner. I always had really fast email correspondence/communication with my consultant's secretary. You're paying for their service so it's really shoddy that they're failing to wrote this letter for you quickly.

Hi again spinstar , I also wanted to tell you what my issues were, basically stress somehow causes my gut to become irritated and inflamed. They haven't given me an actual 'diagnosis' but they've ruled out pretty much all the things they can rule out by doing the investigative tests and procedures I mentioned earlier. I don't know of this will help you but I found that worrying about my symptoms was making me more ill, it was a vicious circle. At the time I didn't even realise I was stressed, I had the same sort of everyday stresses that everyone has but I'd certainly been through more stressful periods and had no stomach issues. But I think things were slowly getting on top of me and because I'm a perfectionist and like to be seen to be able and not struggling I bottled it all up. I've definitely found that staying calm helps and although I still have issues with bloating, wind and constipation, I'm eating normally again, I've put on the weight I've lost and the intense pain is rare now and only comes when I've had a particularly stressful time.
I guess what I'm saying is, try not to panic. I was convinced I had something awful and made myself so ill with worry. But, on the other hand, please make sure you push for the colonoscopy and endoscopy asap. These are the definitive tests you need. Don't let them fob you off.

Also, I've been vegetarian for a long time too. It's interesting that that can upset the gut.

Did the GI consultant mention a faecal calprotectin test when you saw him. A stool sample is needed for this but it gives the best indication of inflammation in the bowel without the invasiveness of a colonoscopy. I've only had one colonoscopy (I was diagnosed with Crohns 3 years ago but I've suffered for a long time) but I'm having another next week as a follow up to my recent op. I found the actual test was ok although it hurt a bit when they were 'going round corners'. The bowel prep is the worst part I'm afraid.

I agree with others that you're being messed about both by your GP & the GI. I know it's a nightmare but I would just pester my GP until they sort out the tests & keep in touch with the consultants secretary until the letter is sent. I think the problem is that drs see this every day & they're not the one feeling lousy & worrying about what's wrong.

I know how you feel regarding food, it's a nightmare when you're terrified to eat but you know you need to. I tended to rely on soft, plain food before I was diagnosed. Have a look for low residue diets on the Internet & see if cutting out fibre helps.

I really hope you get it sorted & feel better soon. Take care & keep posting

Thanks for all the lovely, helpful messages. I managed to get the private GI consultant's secretary to email a copy of his letter to me and then took this by hand into my GP. On the strength of that, the receptionist let me book a blood test appointment tomorrow and I've got to take in another stool sample(if I can!). But my GP will need to get time to read the letter first.

The letter says I need testing for "transglutaminase on blood test and calprotectin on stool sample" for inflammation in my guts. Is that the blood test for coeliac's?

He also recommends an NHS referral for the CT scan and colonoscopy. I really want to know how long the waiting list might be as I may decide to blow all my savings and go privately to speed this up.

At least the next step has begun. Marvellousmarbles, I'm trying to eat more bread today to increase my gluten intake so the blood test will show up for coeliac's (presuming it is actually for that).

Meanwhile, I've still got these non-abdominal weird flu like symptoms with a bronchial cough and chest pain and keep feeling so so cold. The abdominal pain has improved over the day - maybe because of the longer time since I ate salmon and cheese and onion bites? Hope it's not too bad tonight.

I'm sure stress is contributing now Skater -but like you, I've not had any symptoms like this ever, even at stressful times in life. It's very daunting when the body lets you down.

With a colonoscopy, do you have to set aside the day/night before to endure the diarrhoea and so can't work then or the day after, cos of the sedative? I'll have no one to drive me home and will need to get a taxi so i hope they let me!

hi spinstar
yes , dont make plans for the day before- youll need to be near the toilet.
i had mine yesterday, with 2 mgs midazolam and 50 mgs of pethadine .
my blood pressure dropped like a stone after the second dose of pethadine- i had 2 doses of 25 mgs, so they had to stop and do a lot of checks ,so it took longer than usual and i was in recovery for ages waiting for it to come back up.
it was a walk in the park until the doctor told some guy to push down on my stomach (3 times )thats when i needed the extra pethadine.
apparently thats just me,everyone else ive spoken to about it ,has never had that done to them.
biopsies done and sent off ,just waiting now.
my hospital wont let you go home alone after sedation,you need to be picked up and need someone with you for 24 hours.- i was walking on air- high as a kite -so i can see why.
dh had to book the day off work .

Hi op, glad you're starting to get somewhere! I'm having problems too and I'm so lucky that my gp decided to do a faecal calprotectin test (stool sample) cos it showed high levels of inflammation (which suggests ibd rather than ibs). I've also been on anti inflammatories for 2yrs so it could be inflammation from that. Anyway, I saw a private consultant on Monday and I'm having a colonoscopy and a gastroscopy at the same time under sedation (visions of a kebab jump into my mind! ). He said they should be able to tell me there and then what's going on, if not it would be two wks as he'll take biopsies too.
I'm in so much pain and I've had ibs for years but this feels different. He said it could be coeliac as they do get false negative blood tests.
The calprotectin test is to show abnormal levels of inflammation. The biopsy will be to test for coeliac.
Hope this helps and you get sorted asap. I've got two dc aged 4 & 7 and I'm exhausted at the minute!

Wfrances, I literally have nobody who can take me home or be with me. I'll also be in sole charge of the DCs afterwards.

Do you have to have sedation or can you have it without? I remember now I had a colonoscopy about 25 years ago I think (nothing of note and just cos of a one off bleed that was haemmorhoid related) and don't remember having any sedation then at all and actually drove myself home afterwards.

It seems like nowadays it's a much bigger deal or maybe it was something other than a colonoscopy - but I had the powder stuff and beforehand it was a bit difficult but nothing like being up all night at the loo....

Icantstopeatinglol, so does the blood test not test for coeliac's then and will I therefore have to wait for the colonoscopy and a biposy during that to detect this?

Do your DC's not have a friend that they could go and stay with so that at least you wouldn't need to care for them? Would the hospital allow you to stay the night? How do they deal with people who've no-one to stay with them?

Glad you're getting somewhere at last. My colonoscopy is at 10am next Friday & I can't have anything except water after 9am on Thursday & I have to eat low residue on Weds. Then at 5pm on Thurs I start drinking the 1st litre of the bowel prep. That should take 2 hours then after an hours break during which I need to drink 1 litre of water I have to start the 2nd litre which I'll finish at 10pm. Hopefully I should be in bed by midnight, but I'm prepared to spend a long time in the bathroom. DH has promised me a takeaway next Friday night as I'll be starving.

Last time they told me they were almost 100% certain I had Crohns just by looking at the bowel, but wanted to get the results of the biopsies before confirming this. I was admitted a week later as I became very ill - nothing to do with the colonoscopy - & my Crohn's was confirmed with a CT scan. I am quite weirdly looking forward to next week cos I want to see where & what they've taken away. When I made the appointment the lady I spoke to said they won't let me leave unless someone collects me so I booked it for when DH is off work - thankfully he works shifts which comes in handy at times like this.

My calprotectin level was 1800 in Nov last year which is very severe inflammation but my blood levels showed normal - apparantly this is common with IBD. I'm now technically in remission following surgery & hoping to stay that way if I can.

Hope you manage to get appointments through quickly. Take care.

Thanks Mrs Pinot. Just looked up on the internet that you can indeed have a colonoscopy without sedation -so that would be the easiest way forward for me. DCs would definitely want to be at home. One might be OK with staying at a old friend (no longer friends anymore and now in different classes). The other - for various complicated reasons - has never stayed the night at a friend's before and currently has none anyway, poor thing.

So I think I will grit my teeth and go without sedation. The next step though is to actually get this all arranged. It sounds as if I may need three days off work - 2 beforehand and possibly one afterwards, although without sedation, I should be OK - except if I have bad news, I might need a day to process this.

I definitely took the day before & day of off but iirc I had mine on a Friday so had the weekend to recover. My cousin has to have a colonoscopy every year & always opts for no sedation - they just give her gas & air & a bit of painkiller & keep her there for a hour or so after to make sure she's not in any pain. I'll ask for sedation but it doesn't always work for me, not sure why . Please keep us updated on any progress.

I think you should be fine with just one day off beforehand, I worked from home the day before my colonoscopy as I just needed to be near the bathroom. Timings were similar to MrsPinotGrigio so it was only that my commute meant I wouldn't have been home in time to start my first sachet. When you've booked they will give you detailed instructions and send you the bowel prep sachets, timings and a diet sheet. I'd probably take a day off afterwards if you can, as you will probably be quite tired and might be uncomfortable. It took my tummy a little while to recover afterwards, and I bled a lot as they had taken quite a few biopsies.

Tissue transglutaminase is an antibody that can indicate coeliac disease, so that blood test is the correct one. But you can have a negative blood test and still have coeliac disease, so depending on your symptoms and other results they might decide to take a biopsy for that as well. That is taken from the small bowel via a gastroscopy (camera down the throat into the stomach). I had one the other day, I'm just waiting for the results now.

I hope you can get the various tests scheduled quickly :)

I had mine done on a Monday which meant that, whilst I had to stay in on the Sunday, I didn't have any day off before. I went back to work the following day, although I got Colitis as a result of the endoscopy I had done at the same time and ended up feeling fairly awful because of that.

I apparently don't have coeliac (which was tested for with the colonoscopy) and my consultant has suggested I have IBS and may have an intolerance to wheat (which is the thing that seems to kick things off for me).

If I avoid wheat I appear to be able to function normally. If I eat wheat I have some of the same symptoms that you seem to be having - and now have some medication to cope with the results. However, I'm trying to not use it and work out exactly what I'm intolerant to and cut it out.

yes, you can have one without- dmil is having one monday with no sedation as she lives by herself(dbil had offered to stay with her) and just wants to get out of there.

Spinstar, if you have an afternoon appointment for your colonoscopy, you don't have to start clearing your bowels until the afternoon on the day before. So you could maybe just take half a day off work. But wait and see what appointment you get. I had sedation and I felt pretty spaced the day after, I think they might have overdone the drugs! I just stayed at home, but I could have worked if necessary. But could not have driven the car. At the hospital I went to, you could take yourself home by taxi (after sedation) but you would have to sign a disclaimer to say this was against their advice or something like that, as they prefer you to be with someone. But it's not absolutely necessary.

Only just seen this thread. I had a very similar situation last year and had a colonoscopy where a polyp was removed. I also tried Lepicol which seems to really help with the sudden and urgent diarrhoea. I think being perimenopausal (or getting older) has caused some issues and I cannot eat what I previously did. I no longer seem to be a able to tolerate lentils and some vegetables.

I know it's worrying however I think the colonoscopy will be reassuring.

Thanks you for the info. about colonoscopies and thanks newstart for your support.

I had a less than optimal appointment with the nurse at my GP practice today, who was clearly overworked, running 45 minutes late and stressed, poor thing. However, she muddled up the blood and stool sample labeling and threw away one of them, until I tactfully mentioned what she'd done. Then she got my blood all over her hands (it spurted out after the blood taking!) and didn't wash her hands or use gloved which made me wonder if she'd even washed them between all her other patients.

I did feel sorry for her but it also made me feel a bit worried about trusting the whole process. She couldn't tell me how long it'd be before the test results or how long a wait the NHS would be for the CT scan and colonoscopy or whether my GP had even referred me yet for this in the NHS. But at least I've had the blood and stool sent off and can only wait again now.

It's 6 weeks that I've now been feeling really ill. The flu like symptoms and the deep chest pain and cough still continue, along with the abdominal pain and after a day at work, a dash to the GPs and the school run too - which in the past would be only about half of what I can do in a day - I feel completely wiped out. I've got shivers/feverish feeling and am cold and my bones are starting to show where they used to be covered by a healthy plumpness! It's really scary.

No doctor that I've seen has been interested in the non abdominal symptoms and pain and I'm thinking these must be post flu or could even be occluded pneumonia. But it feels like 'over kill' to go back to any doctor and discuss this. They never want to do anything until you have test results and seem to need to focus just on one thing at a time rather than the holistic picture. No one has really commented on the fact that I've not seen a GP for years, have never ever been ill like this and am suddenly only functioning at about 15% of my normal.

DCs are fed up with me still being ill and if I comment on feeling sick again, they say it's old news. They're talking now about our planned family holiday as if I'm going to be better by then (early July) and are expecting me to do lots of energetic activities with them as usual. I'm not even sure we'll get away on our holiday at all and if we do, if I don't get considerably better, I can't see me doing much kayaking/cycling/wildwater swimming/hiking etc etc - which they've been waiting to do all year.

I'm only working at about half my usual capacity and I can't afford, financially, to do this for long, being self employed. I've got no sickness insurance.

I'm waiting to hear back from the private consultant's secretary about the cost of colonoscopies and CT scans privately and how long a wait it would be to go privately.

I wish there were a health service where on day one you could go along, have all the tests done or at least within one week, have different specialists take a good look at you, have your own GP do a holistic appraisal of you and then everything go from there, straightaway. Never having had to use medical service much before, I'm shocked at how slow and non-joined up the system is. No one has enough time to listen or appraise you properly unless you can pay for this and even then, they're running late or too busy and stressed themselves.

I don't blame any individual but I am getting a clear experience of the shortcomings of the system and this is worrying as, like so many of us, I'm relying on the system not to fail me at the one time in my entire life when I really need it to work.

I've never been a worrier or concerned about DCs at all (no pets). In fact, despite some big challenges in life (eg death of both parents a while back, raising my children alone since their father left and returned abroad when they were very young and then died and had never contributed financially), I've handled things calmly and rationally and began with that same attitude towards my current illness. I wasn't even sure if I needed to go to a doctor at all and, like all other illnesses I've had, I just assumed that I'd recover naturally, given time.

The worry is growing based on the number of weeks I've now been ill and the intensity of the symptoms. I thought after 6 weeks+,whatever was going on would be largely naturally healed by my previously strong, fit and healthy body. I can't understand why I feel more ill than last weekend in fact and am breathless and gasping when I walk around, and needing to bend over to relieve the pain in my chest and back.

On Monday, I'll contact my GPs again to check if he's sent a referral letter for a colonoscopy and CT scan and I'll also try again to contact the consultant's private secretary and see what she says about costs and time frame for having tests done privately. I'm supposed to see the private consultant for a follow-up in the NHS (he was trying to save me the money) but I've no idea even if my NHS GP has referred me to him for that yet or what the NHS waiting times are.

I look scarily different to my normal self. People who know me often comment on how well I look. I'm usually a bit plump and rosy cheeked and look younger than I am, with glossy hair and strong body and largely wrinkle free skin. Now I look very very pale and gaunt and the skin on my body is dry and wrinkly. I think I've aged about 10 years in the last 6 weeks.

Does post viral fatigue lead to the kind of symptoms I've got? It feels more like I'm in the middle of an illness rather than 'post' illness but I've never not fully recovered from anything ever before.

Just heard back last night from the private consultant's secretary that I could have a colonoscopy done there for just under £2,000 in about 4 to 5 weeks time - so even going privately, there's a waiting list and it would wipe out my savings.

I'm not sure whether to go for this or wait and see the results of my latest blood and stool test - probably within the next 10 days and also how long an NHS wait would be for colonoscopy. In the meantime, it looks as if I have several weeks waiting, still feeling ill and still no idea of what's wrong with me.

Feeling powerless in this situation. I guess I'm incredibly lucky never to have had a medical condition before or had to rely on doctors to help me. Is it always like this, where you just have to wait and wait and get through the days feeling really ill, with no diagnosis and the fear growing all the time?

The worst part of it all now is that it's taking it's toll on the DCs who are finding it increasingly difficult to understand why mum's not better and wondering what on earth's wrong with me.

They said they might be able to squeeze me into a full clinic before then - which would be about 2 weeks time but it would depend on whether the private hospital had the staffing to cover this - but in principle, the consultant might be able to do this.

As he works in the NHS too, I guess he has limited availability privately but as he's the one who's seen me and recommended these further tests, I'm not sure whether it'd be OK to seek out a different consultant now.

I'm hoping to hear more form his secretary today....I just wish things could get back to normal and I could be well again.