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"

Peggy, you're poor friend! Hope that doesn't turn out to be me too. Scary thought.

Snowfire, this is really helpful. I think I probably can be OK without sedation as they'll do the throat spray and I can have gas and air they said for the colonoscopy. I had one of the latter done about 25 yrs ago and no one even mention sedation or gas and air and I remember nothing bad about it - only the lovely male nurse who was supporting me through it!

I need a nice guy there to distract me, I think (although I massively fancy the consultant but given what he'll be doing, this isn't really conducive to that kind of 'energy'!! and he's younger than me too.)

This time, I'm far more worried about what they'll find. I just wish that all this could turn out to be an obscure bacteria or protozoa that can be killed off and I'm cured. In my lifetime, I've had amoebic dysentery (travel abroad in 20s) and crypotsporidium (local swimming baths) and after a few weeks not OK I was totally fine for decades. Could it not just be something like that?

I guess they'd have found it by now on faecal samples or an infection would have shown up in blood tests. I've googled wildly to find obscure bowel infections/invasive creatures but can't find anything that would fit my symptoms - as I've not had further diarrhoea at all since the first 2 weeks - but still the pain, the sense of urgency to go to the loo and the cough/chest pain, headache/dizziness/shivers that come and go.

This morning those symptoms have faded a bit and as usual I'm thinking - well maybe I'm getting better? But I've been here again and again and know that they just return. I've barely eaten today except 2 rice cakes with chicken but will need lunch soon and that's likely to start the symptoms off again. You'd think I'd feel less dizzy and headache if I eat but it's the opposite.

Dare I say it Spin but stop this behaviour! = 'I've googled wildly'
There is still a chance it might all move off and leave you alone. Like I said the menopause is a cruel mistress, people don't bang on about it for nothing.
Anxiety and stuff can also take its toll on your physical health. Say to yourself, 'it might all be okay' there is a significant chance that it will. Your bowel symptoms are gone (for now) they are not persistent. You still have very fixed ideas and are very focused about food and linking foods and symptoms in your mind.
Once you have had the test you can have stomach acid medication (for a few weeks they have very few side effects) and some plain old painkillers. That might work wonders. Not all bodies heal themselves, ask any insulin-dependent diabetic living a free life because of medication. We can't consider them 'failures' because they rely on medication. The world is a random place and learning to roll better with the punches rather than 'locking down/strengthening up' more may be a more flexible approach.
You are making fierce demands on your body and your mind by being the all encompassing mum, dad, aunt, uncle, cousin, friend, coach, playmate, activity leader etc etc to your kids and expecting your body never to have a bit of a blip, like. Your poor mind is under a fierce amount of stress too trying to provide answers for all eventualities. You say you aren't stressed normally but some stress is unconscious and can be unfelt if you are operating within the strict boundaries of your span of control (the comfortable prison we create for ourselves). It may only show up like in our stomachs.
When all this is over it and you are feeling better, I think would be great for you to look at taking a more softer, flexible approach to thinking and reducing your hypersensitivity to threats from outside. I'd love you to be happy and to be able to move freely in relationships (all sorts of relationships)...and to be able to ask for and accept help...even if it feels unsafe to your mind.
There is a form of CBT therapy called Acceptance & Commitment therapy (ACT). It is a very practical way to create self-support skills and self-compassion and balanced perspective-taking through non-judgemental observation of ourselves. And to get in touch with what matters to us. I have used it to great effect in my own life too and have trained in it. There's a book called The Happiness Trap by Russ Harris that provides a good introduction/self-help. A lot therapists in the UK would have training in it now including NHS therapists...

Nickers - thanks. Yes, I will always from now on pay any holiday insurance in case another time I book something and we then can't go. Never had to even consider this before as I've always been fine. I can now see how lucky I've been all my life, really, that I've always been so healthy and strong.

Sadie, more words of wisdom. I'm doing all I can to think positively and to just 'be' with what is rather than trying to change things but like all humans, find it hard to know how not in control we really are in life and that anything can suddenly happen, at any time, when you least expect it.

I'm sure I'm not the first or the last to google wildly! I always have this need to know what's going on and to be able to use my brain to get one step ahead. I also know that medics are not infallible and sometimes we know ourselves best - and if I only had more medical knowledge, I might hit on the answer.

I know that I must be feeling stressed right now - as anyone would be - given everything going on but I really don't think I was unusually stressed before and I don't want to get into explaining away physical symptoms through emotional reasons. I've seen others mistreated medically and assumed not to have a physical basis of an illness (usually women, sadly) and then it's turned out to be a wholly physical thing - sometimes diagnosed too late. I've also read a lot of similar stories here on MN and don't want to play up any emotional context where there is none and it's purely physical disease.

I find it kind of abusive that so many women (and occasionally some men) are categorised as having emotional issues when it's nothing at all to do with that and emotional issues are only the result and not the cause of something physical.

Not sure any of this is related to menopause as I still have regular periods, ovulate and seem to have escaped the worst perimenopausal symptoms so far - but I guess some of it might be connected to this. All the symptoms started though in relation to the severe 'digestive system crash', post flu and don't seem to fluctuate depending on the time of my cycle.

In my life, I know I've been everything to everyone for a long time - and probably not had enough time for me. This has actually worked really well - until now - so I need to learn that sometimes I can't do it all. Trouble is, I can't afford, financially, to draft in paid support and I haven't had time since having DCs, to maintain friendships that I can draw on in times of need, nor time and resources to reciprocate favours done. I've never liked feeling I 'owe' someone and can't pay them back - whether that's time/childcare etc.

For the last few hours, I've been enjoying fewer symptoms and am finding this fantastic - even if it doesn't last. It really makes you appreciate being out of pain/suffering when that pain keeps returning. If nothing else, this experience, however it ends, is bound to make me more compassionate towards others who are suffering too.

Spin you might find that your holiday company allow you a week's grace with payment? I forgot to pay for a skiing holiday last year and rang them a few days later, they were completely fine with it.

Hi Spinstar. Just to add my experience - I also have ulcerative colitis. When I had my first colonoscopy I had 50mcg Fentanyl IV. This did not make me drowsy at all but enabled me to relax and meant that I really did not have any pain during the procedure. A couple of parts were uncomfortable but I don't have a particularly high pain threshold and it was ok. I walked home afterwards and felt fine.

Have they tested your thyroid yet? I also have Hypothyroidism and the two auto-immune disorders were diagnosed within 2 months of each other.

Hattie, thanks for sharing your experience of sedation. I'm hoping they can sedate me mildly if it looks as if I can't cope without anything - so that they can get everything done but I still haven't got the info. from the hospital yet - so don't know what exactly they offer.

DC with SN, came to me yesterday spontaneously and said, "Mum, it doesn't matter about the holiday. I just want you to be OK" - which brought tears to my eyes. We just had a hug and nothing more was said but I'm longing to be able to be OK again and back to normal for the DCs.

In the last 2 days, I've felt a bit better. I feel as if the 'infection/inflammation' thing - whatever it is - is calming down and although I've got all the usual symptoms, I don't feel so 'toxic'/ill in that same way. I guess this could be IBD flare up dying down or something else completely.

However, when I did some basic domestic tasks yesterday, thoroughly enjoying the ability to move my body around more normally, I was absolutely, crashingly shattered with deep deep exhaustion afterwards, chest pain, sleepy to a point of feeling I could lie on the kitchen floor and not move. I've known people with ME and it felt just like they've described to me - the complete inability to move.

I guess it could be related to IBD however - but as I still have no idea what's wrong with me, I don't know what the root cause is. Having a bit of normality for a few hours though, put me in a great mood and I was again struck by how unrelated my mood is to my symptoms and that feeling good, is my starting point and I've only felt worried and stressed as a result of being so ill for so long, not vice versa. I felt happy and optimistic, when I was able to do some chores - yet afterwards, whilst pleased I'd got stuff done, I was physically a complete wreck!

With IBD, does anyone know if it's a bad thing to use those periods of energy to get things done or a good thing? Usually, with ordinary illnesses, as I'm getting better, I push myself to do more and this actually helps to get me back to normal again. This time, it feels as if I can't expend too much energy, even if I feel like I can and want to, at the time - because then I'm wiped out in a way that even pregnancy, a C section etc never even came near to.

Hattie, I've not had my thyroid tested yet. I think the GP may be waiting till after the endoscopies and scan. He told me that one particular blood test that had come back normal, is a very effective test for inflammatory conditions - so I'm really puzzled why this was normal, yet I'm full of acute inflammatory symptoms and had a raised faecal calprotectin test result too. Could it just be that I've got IBD but not too badly - or could all this still just be a horrible and possibly exotic virus that has messed up my digestive system and made me have a post -viral syndrome?

Just remembered....you should have an appointment about a week before you have a colonoscopy where they explain everything to you, frighten you to death by telling you all the things that could go wrong and you sign a consent form. You will be able to ask all the questions you need.

Overthebliddyhill, I don't think I get another appointment beforehand - or at least this hasn't been mentioned to me nor have I yet received the letter. That would be tomorrow, and I'm already working all day that day now. I did try to ask questions by phone on Friday but they were too busy to answer much.

I'm hoping to get the letter today and then see what it says.

Not feeling so good today again, which is depressing as I felt a bit better across the weekend, despite working for part of the time.

spinstar- my routine bloods came back normal - but my rheumatologist ordered an Immunoglobulins blood test ,which has come back abnormal .
my igm is raised, my immune system is definitely fighting something.

I've been watching this thread & checking in to see how you are. I really think you need to speak to a Dr or someone for advice. Sorry to her that you are feeling so unwell. Is there any family that you can call? You may end up too weak to do anything for your DC's. I'm not sure what social services could offer any help with as I'm not in the UK but if you did need to be admitted the DC's would need looking after.
I was very ill with PND & we are in Australia with no family support. I was meant to be admitted to hospital as I was so ill but I was adamant I couldn't go as had to be home for the kids. I know how you feel as I wanted to be home to do everything. In the end my DH had to take 3 months off work to do everything but looking back I really should have gone into hospital.

Well the letter and powders came at last and I called the endoscopy department again and clarified that I can go ahead without sedation but they wouldn't go ahead at all if I wanted sedation but had no accompanying adult. So I'm definitely going without sedation but they'll use a throat anaesthetic spray for the endoscopy and I can have gas and air for the colonoscopy.

Overthebliddyhill - there was no suggestion of a pre-appointment to discuss anything - just that you can call them with any questions.

Wfrances, I'm not sure I had an immunoglobulin blood test - so maybe that might also have shown up something in me too? Hope things go OK for you.

Kittkat, there's no family locally who can help, nor family who can travel here to help - but in the event of me not coping at all, I know one school mum has offered to give lifts to the DCs. Not sure what we'd do if I can't look after them at all however and also a little bit worried that if anything went wrong during the colonoscopy and endoscopy (like a perforated colon and internal bleeding, meriting an operation, how I'd then be in a fit state to ensure the DCs were picked up from school and cared for.

I think I'll need a named local person who the hospital could call in that unlikely scenario and who could take the DCs but I think the chances of anything going wrong are v slim (1 in 1000 for colonoscopy).

So I've read through the info about the laxatives and it sounds as if I'll be up all the night before at the loo and not v pleasant, given I've already got stomach pain, soreness, nausea and dizziness - all the things it says to expect after using MoviPrep. I may be so exhausted on the day that I drop off to sleep whilst I'm being scoped! I can't even drink water after 4am so I'm going to be v lightheaded and dizzy.

I don't mind any of this - all I mind is that I check out OK and don't have anything scary going on.

Spin I'm so glad you've got the appointments for the colonoscopy & endoscopy. I've had both over the last few years & they're not pleasant but at least you'll get some answers. I had both endoscopies without sedation & they weren't too bad at all - swallowing the first part of the scope was the hard part but the nurse talked me through it. My first colonoscopy was uncomfortable but the second was very painful - I was lightly sedated for both. The Dr said it was painful because my bowel is still tender from being handled so much during my surgery. Once round the first corner it was all fine & the pain subsided.

Moviprep (yuck) - if it's lemon flavour mix it with lemon & lime flavoured water & make sure the water is freezing cold. I drank mine from a cup with a lid & a straw so I couldn't smell it - it's rank!!! Some people mix it with vodka & I've seen a recipe to make it into jelly as well. Don't worry if the first litre does nothing, by the time you start the second you'll be running to the loo. The instructions say 'stay near a bathroom' this actually means 'don't bother going back downstairs!'

Yes fatigue is a common symptom of IBD. I tend to use my bursts of energy to get things done & just do small amounts. I gave up trying to clean the whole house in one go years ago & now I do it slowly over a few days.

Good luck with your scopes, I hope you get some answers & can start to feel better soon.

MrPinot

Am I right to assume that I'm unlikely to get to bed the night I take the Moviprep? The last lot is taken at 8pm and I normally (on a good night) from 10pm till about 4.30am - but if I'm not even taking the second dose till 8pm, I guess I'm going to be up all night? I hope this won't wake the DCs as they're up for 5.45am usually and I've got to do the school run before my hospital appointment too (should I wear incontinence pads???)

RE. cleaning the house, I've not vacuumed anywhere for 8 weeks now and only wiped around the loos a few times. The kitchen is dire - just wiped where I prep. food and manage to stack dishwasher - but that's all.

It's just too messy and dirty to have any cleaners in and no surfaces left for them to clean! I don't get much time to clean the house as it is but it's far worse now.

Do you know why IBD makes people so tired and flu-like? If it's the digestive system at fault, how does that connect to a generic feeling of exhaustion? It's all very weird and new to me.

I meant MrsPinot of course!

Spinstar I don't find the pre-colonoscopy prep nearly as bad as some people make out. I sleep and wake up occasionally through the night to go, which is no different to when my UC is flaring anyway. For me, the prep really isn't as horrendous as some people describe.

Could you take the preparations earlier in the day?
When I had a colonoscopy I took my first does at 1pm and I think I had finished by 4. I was completely empty by the time I went to bed and had an undisturbed night's sleep. I had to be in hospital for first thing the next morning and I was fine.

I would take a sanitary towel with you in case of an accident.

Also, I had sedation, although it didn't work, and I felt fine afterwards. The lack of food and drink gave me a thunderous headache so I took some co-codamol when I got home.

Is it really OK to take the preps earlier than the instructions tell you to do? Should I check this out with the hospital first? It'd make a lot of sense to take them earlier and then get some sleep that night.

They said there was no way they could give me 'a bit' of sedation or any at all unless I had an accompanying adult. They probably need to be extra cautious these days because of litigation.

Is there any chance that this isn't going to turn out to be IBD? (and obviously also not something even worse) or do all the signs point towards at least some level of that disease? I'm clutching at straws right now - I know I am - but I guess it's only human... After 8 weeks with abdominal and flu like symptoms, I know it's unlikely to be something benign - but I just wonder if anyone else had this kind of thing and it disappeared, never to return - and they got completely better???????

Please do not take the prep earlier without seeking medical advice. They give the timings for a reason.

Is there any chance it won't be IBD? Well, yes, given that your fecal calprotectin was not hugely high. But either way, I would not stress about it as you're not yet at that stage of diagnosis. I know 8 weeks feels like a lifetime for you but you're on the right track and getting the correct tests.

No don't change the timings. Just do what you're told. I had to take my second one in the evening. I had finished clearing my bowel by midnight and I had a reasonable sleep. It's really not that bad, or difficult, don't worry about it.

Have you heard of Diverticular disease it could also be that and in some ways although its not pleasant its not by any means the worst diagnosis.

There is also a possibility you have more than one thing going on eg mild IBD plus an infection of some sort causing flu like illness.