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"

How long have you been eating 'virtually no gluten' for?

You have to be eating gluten in significant amounts (like at least 4 pieces of wheat bread a day) for at least 6 weeks before a coeliac test, or else the test won't work (it looks for the antibodies triggered by constantly having gluten in the gut)

i had my colonoscopy 2 weeks ago - sedated and pain relief (pethadine)
would i have it again without ? not a chance.

on the other hand ,dmil had hers done last week no sedation or pain relief and she said it hurt but not so painful she couldnt tolerate it.

had the endoscopy last summer ,with the sedative but it didnt work on me.
not nice but doable, only takes a few minutes .

With sedation their is a much higher chance they will be able to view the whole of the bowel especially if it is convoluted (as mine is). You might end up needing a second one if they can't get the whole way round

OK. Well there isn't anyone who could be with me after sedation - so I'm just going to have to do this alone. If necessary, the DCs might be able to go to another person's house overnight but this would massively stress SN DC - which would then massively stress me too!

My appointment start (for the pre-prep stuff) is at 8am and they said I only needed to take the laxatives from the night before - so I'm assuming and planning I can work that day before but probably will be up all night at the loo till morning.

I can get a taxi to bring the DCs to and from school but I do need to be there for them and in full mental capacity.

Really the only thing I'm worried about is what the doctor might find and how then I might cope with this news and telling the DCs - as they'll ask as soon as they see me.

The nurse on the phone earlier mentioned having gas and air as an alternative to sedation and a throat anaesthetic spray for the endoscopy - so maybe that'll be enough to get me through without sedation.

I would take the sedation. I've had an endoscopy without (fine, actually if a bit undignified,) but no way would I go a colonoscopy without having had a sigmoidpscopy where it didn't kick in immediately and needed topping up.

I have a friend who just used has and air which he claimed was fine, although I'd want to be fairly confident that I respond to nitrous (I know I don't and I gather this is not uncommon).

I've had both on the same day. I had sedation. It was on a Monday (went to hosp at 12 to get into the scope queue but didn't have it till after 2pm) so Sunday early afternoon I started the bowel prep stuff. It was all 'out of me' by that night-time so I didn't have to get up during the night to go. Then fasting from then on only water or clear liquids (they tell you anyway on the sheet).
I had to stay at hospital for a couple of hours after the procedure. Some people have a nice nap others are wide awake (I was). Felt just a bit spaced after it, nothing else. I was collected from hosp at 5.30pm. I had someone to cook the dinner but if you cook something the night before or order pizza. You won't be 'out of it' or passing out or anything like that. Only thing I had was gas pains in my tummy but if you lie on one side and then the other it finds its way out. Next day right as rain. You would manage with getting kids minded and dropped back to you after you are home, feed them a pizza and get them to watch a movie and that'll be grand.
Again you are imaging the worst. You even have strong images in your head of breaking some terrible news to your DCs. Tell your DCs this is a routine test, which it is. Then they won't be getting really worried about the test or the results. Even if they find 'something' likelihood it is something really manageable and not life-threatening. And after the scopes you can take medication to make the symptoms go away.
You are still able to eat and sleep and work and manage the kids (albeit feeling crap while you are doing it). You are not going to die next week, next month or next year. Just telling you this so your mind knows it!

So I told the DCs that I was going to be able to have some tests done much quicker than we'd thought and for free too and that they might need to stay with someone overnight because the hospital may not allow me to go without sedation.

Oh dear. DC with SN stormed off, furious and distressed, wouldn't speak to me at all and has gone running on the treadmill and then on the bike machine, to express fury and angst. DC totally totally hates the thought of having to stay with someone else, which would be the first time ever at another person's home - never done a sleepover. Other DC also furious and morose and has gone off with smartphone and a blanket to the sitting room and refuses to talk to me - all because they don't want anything to disrupt their routine life - not because they're worried about me - at least I don't think so - though maybe underneath their anger is fear.

However, there isn't a clearly identifiable person who would have them (that other mum offered to give lifts, not overnights) and more's the point, there really isn't any adult who could come and stay with me overnight, which I think you have to have after sedation? The thought of being with someone I don't know all that well at all, when I'm disinhibited, sleepy and probably farting - isn't great!

So I'm still really really hoping I can go without sedation or have such minor amounts of sedation that I can still be home alone with DCs that evening. Obviously, though, what matters most is that the tests are done properly and thoroughly. I think I'd better talk with the endoscopy department once I get the written leaflets and see what they say about all this.

i was well drugged up but it only lasted an hour by the time id got home i was fine/norma,.not even the slightest bit drowsy and i didnt have any wind-(none that i noticed anyway )

Confused, I think although it's extremely hard for me, it's completely understandable that they're angry at hoe life at home has changed and nothing now is predictable in the way it used to be. I feel really hurt and upset at their reactions but I feel even more, really worried about them and how it's affecting them.

I'd rather they get cross with the situation than worried about me. They don't seem to be able to talk much about any of it, even the one without SN. I think they sort of 'need' to pretend everything is normal and that this is just an annoying thing but trivial and that it's all mum's fault. The alternative is to face a potential continuing and unpleasant change in their lives of mum no longer being all powerful and providing a completely secure base.

Wfrances, I wonder if the hospital could have some agreement that they could use sedation if they need to do this to get the procedures done - but stop before they get to a level where I'd need aftercare that night? I could stay in hospital until early evening and they could keep an eye on me and then DCs and I could end up at home later on - which might be a working compromise.

I need to stay with the fact that things are at least happening quicker now and I'm not going to be forking out thousands of pounds either. DCs are calming down but can't /won't talk about any of it. It's certainly times like this that it would help to have another adult around. DCs are not young enough for me to keep up a good pretense that all is normal - yet not old enough, to discuss things compassionately and sensitively. I just want things to get back to normal for them, if only they could.

Both me and DH have had colonoscopys with the sedation and were perfectly capable very soon afterwards. You should be fine at home with your DCs and, based on our experiences ,can't see why they would need to stay overnight with anyone else. ( NHS does tend to be a bit over cautious imho).

Hi spinstar, I had both done just over a week ago with sedation at about 2pm and was at my ds swimming lesson at 5:30pm. Am I right in thinking you would be getting a taxi? I wasn't able to drive so my dm took me and drove me home etc. Do you have anyone who could just be there for you to help? Not necessarily packing the kids off to someone's house but just a friend round to give a hand? Honestly it's a breeze with sedation tho I can remember a bit of pain when he took some biopsies so think this would have been more than uncomfortable without sedation.
Hope you get sorted tho, I know you're worried about you dc also but you need to look after yourself too

I had a colonoscopy recently with just the gas and air and although it did get very uncomfortable at one point, when I mentioned it they suggested a different position which really helped. I was having coffee at my friends house half an hour later, feeling totally normal.
So my experience of having had one - gas and air is fine if youre not squemish and let them know if things get very uncomfortable.

Spinstar I am a pharmacist and I would suggest you phone the hospital and ask what they use for sedation.

Gas and air leaves your system very quickly and you would be absolutely fine in 30 minutes.

Pethidine or Fentanyl you would be dopey for 4-6hours but still ok ( not to drive or cook but fine in charge of teenagers)

Midazolam you will need supervision afterwards (best thing might be to get someone to stay over with you and kids so they are not away overnight).

Anything else post or PM and I will come back to you.

I tried to talk to someone from the endoscopy department today but they were too busy and said wait till I get further information through the post. When I asked about types of sedation or going without sedation, the person I spoke to just mentioned that you have to have an accompanying adult with you. I haven't yet found anyone who could do this for me and so would plan to get a taxi home but would still prefer to go without sedation anyway.

I'm no clearer however about whether they could sedate me a bit but not so much that I couldn't taxi home alone and be with the DCs fine later that day. The procedures should both be over by late morning and so I hope if I had to have a bit of sedation (is there such a thing as a 'bit'?) then I should be OK by later afternoon and beyond.

They did mention gas and air again however - so maybe that's the only way to go.

Nickers - DC with SN isn't so disabled that we have a key worker - so it's just me who has always coped with any issues and the school (mainstream) who are aware too.

Just found out my CT scan is for next Wednesday and this looks very straightforward and something I can squeeze in between work and school run. So that's a relief.

Off to my GPs now to talk about the test results to date - but I know he'll probably say there's nothing further to be said or discussed and will make me feel I'm wasting his time. I just want to ask a few things though about blood tests and the implications of all being normal - and whether this might imply something less serious systemically. I've barely used the NHS in 51 years and this is really the one time I've needed my GPs input - so I hope he's at least civil today.

if I had to have a bit of sedation (is there such a thing as a 'bit'?)

When I had my colonoscopy I had a 'bit' of sedation I think. Actually it may have been just right for me instead if that makes sense. I am naturally slight of build (6 stone 2) and have had experience of diamorphine which was supposed to control pain for 4 hours making me unable to stand for 24. I mentioned this before sedation and insisted that they use my weight to calculate the dosage.

In my opinion they got it just right. I was fully aware during the procedure but no pain, took a little nap afterwards of probably an hour, and then went home with DH. I suspect I would have been fine a couple of hours after that to look after the children but because DH was there I didn't have to.

The consultant laughed about the 'paediatric dose' of sedative but it was right for me. Perhaps you can talk with them about something to just take the edge off if you are normally able to cope with discomfort (as your labour story would suggest). They can vary the dose of certain medication. Perhaps you can have a small amount and with a cannula top up if necessary? That doesn't help you plan for the children in the eventuality of you needing a more significant dose though. Worth discussing with the hospital.

How did it go with the GP, Spin?

Homebird, that's good to hear that they might be able to give me a little bit of sedation but not too much. I just need to be in a fit state where they can carry out the full procedures without them having to stop part of the way through - yet OK afterwards to carry on with my normal day, if at all possible.

Moggie, the GP was Ok with me in the end. He went over all the tests I'd had to date and I pushed him to say whether having normal blood tests might imply there's nothing too sinister going on and he said most likely that's the case. My B12 and haemoglobin are all fine and something that seems to test for inflammation through the blood count was also fine. The only abnormal test so far has been raised faecal calprotectin.

My cholesterol level which has been too high for a while at 5.5 has dropped to 4.5 - which is now in the normal range - the one good thing I guess that's come out of this so far. As I can't eat cheese, milk products or any fats now, I suppose this is why it's fallen to a normal level.

He said that the colonoscopy could pick up microscopic colitis of something like that which may not show up any other way.

I'll have a better idea of what might be going on within the next 2 weeks now - but if nothing is found - which would be great - there's still no answers about why I still feel extremely ill most of the time.

I keep hoping that the passage of time will just mean my body heals itself, as it always has done - but I'm not getting any better and every time I wake up - whether in the middle of the night or in the morning, it comes crashing back in to my mind that my life has radically changed and I don't know what the future holds. If it's going to be like this forever now - or worse and I'm dealing with medication side effects - I'm going to find it tough to cope.

For the last 8 weeks, I've barely just managed to work at about 50% capacity and do the bare minimum for the DCs. But this is no kind of life at all, as I can't even keep on top of domestic tasks let alone do a single thing for the DCs for pleasure.

Last thing last night, DC (without SN) was talking to me about looking forward to the holiday and I was just gutted because it's clear DCs haven't yet fully grasped what's going on and that we're unlikely to get away on the holiday at all and even if we can, I won't be able to do any of the things that the holiday is all about.

In fact, the type of hols we have, are usually physically much more hard for me than being at home - with still lots of cooking meals (DCs don't/won't eat most meals out), packing and unpacking, day long walking with a rucksack, laundry - but all good stuff when I'm fighting fit. If I'm anything like I am now, I'm not even sure I can do the long drive to the place we're staying. I won't be able to eat anything except chicken and rice and drink water and yet DCs are expecting the typical kind of hol they've waited for all year.

The week I have to pay the final amount for the hol. is the week I should get my medical test results - but not quite in time to make the decision about cancelling the hol or not and I'll already have lost the deposit.

I know that a single hol isn't at all important, given everything going on - but for the DCs it's everything. They're beginning a v stressful time at school where there are end of year exams and the school makes a big deal out of this and all the Dcs spend the half-term revising. Every year, the only thing that gets my DCs through this is knowing they've got a hol to look forward to - the only one we get in the year - and I always use this to help them get through their exams and say things like, "Don't worry. We'll soon be off in a kayak and forgetting all about Physics!" and things like that.

That one week in the year is something we all hold on for and this year it looks as if it won't happen and it just seems like an awful turning point in the DCs lives - and mine. Sorry if this is sounding so self-pitying. I've got to get up and work soon and usually, this means that I have the afternoon to catch up on housework and do fun stuff with the DCs - and yet again, it won't mean this at all - just me feeling exhausted and ill and DCs quiet and withdrawn. DC with SN has now got to a point where there's almost a phobic reaction of my illness comes up in conversation with other DC.

I've got no one to talk to about any of this and of course can't talk to the DCs - which is why I'm still off-loading on here.

I have a close friend, who has symptoms like you. their symptoms have went on for 7 years now and although hes seen lots of different docs/consultants no one can get to the bottom of it and has more blood and stool tests than you can shake a stick at. hes also had a lot of other tests like endoscopy, colonoscopy, ct scan, mri scan, 2 or 3 ultrasound scans, barium scan. bacterial growth tests, thyroid test, phaeochromocytoma test, addisons test, cushings test etc. etc. the list really does go on and on.

like you he gets up early and has diarrhoea then that's possibly it for the rest of the day - sometimes he has a second episode, most of the time it can be really urgent. he gets dizzy spells and pain under his rib cage a lot, pain in his back, fuzzy head, headaches etc. etc. the only thing that stops it for a while is he gets metronidazole from his gp - it stop his symptoms for anything between 3 and 6 months but over that time his symptoms slowly come back 1 by 1. no one can explain why his symptoms stop when he takes this antibiotic because it doesn't treat dizziness but dizziness can be a cause of a parasitic infection but no one can find any parasitic infection... he has been told in the past its all in his head, hes stressed etc. but that's just not him as a person.

I feel pretty bad for him because its like it hangs over him and hes changed a bit since this has started. he hasn't lost weight but has put on quite a bit and his diet hasn't changed - again no one knows why.

hopefully they get to the bottom of your issue because I wouldn't like to think other people go through what hes gone through the last 7 years with no end in sight - its a horrible thing to watch someone else suffering.

good luck!

Hi, I've just skimmed through this thread and it sounds like you've had such a rough time but glad you're finally getting your tests done.
I work in an endoscopy department so have seen loads of these tests. The upper endoscopy (OGD) is generally done with local anaesthetic spray. The spray tastes pretty rank (supposedly banana) but works quite well to stop you gagging. The trick bit for you is swallowing the camera but once it's down, just concentrate on your breathing and it will be over in a few minutes.
Colonoscopy takes longer and can be quite uncomfortable, especially if you have had previous abdominal surgery. That said, we do around half of ours without sedation and many people manage really well. We are only just introducing gas and air in our department but the research shows it can really help during colonoscopy and you can drive yourself home afterwards.
Hope this helps