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 don't worry about being up all night after the prep. I was in bed by 11pm before mine 2 weeks ago & I'm eating normally & didn't finish the prep til half 10. You won't have eaten after breakfast the day before & you're not eating much at the moment if I remember rightly so there's not going to be much in there to clear out.

Trying to get DS sorted for school at the moment but I'll be back later to answer the rest of your questions.

It may be diverticulosis.

I think I'd better stick to the exact timings from the hospital for taking the Moviprep. I can get through one night.

Yes, it could be diverticular disease/diverticulosis. I just really don't know. The flu-like symptoms have been less for a few days now - unless I've overdone things physically. Still feel nauseous and dizzy but not all the time now and not had a really bad night sweat for a couple of nights.

Heart rate is still doing weird things like racing at 112 when I'm lying down resting and then down to 52 whilst resting, at other times and lots of missed beats and arrhythmia but this may be unrelated to anything with my stomach issues.

MrsPinot, given I'm not eating much these days and all of it v bland stuff - rice, chicken, prawns, scrambled egg - and the day I take the Moviprep, I'll be eating nothing, how will the laxative react to an almost empty stomach? Will this just mean waves of pain and cramps but not so much diarrhoea?

Also, Has anyone had an abdominal CT scan? I've got this on Thursday and it sounds just like a glorified X ray. Is that all it is?

You should be ok with the prep, I had it 3 years ago when I was very poorly & not eating much at all & it wasn't too bad. The cramping was just like when I need to go & it was just like water when I did but it wasn't painful enough to need pain killers.

I've had several abdominal CTs as I couldn't have colonoscopies due to a narrowed bowel which has now been removed. They're very quick, about 10 mins & not even uncomfortable. The machine is like a big doughnut & they slide you in but it's not enclosed. If you're having it with contrast they'll give you something to drink - it tastes like aniseed & they'll put a canula in to inject the contrast stuff in. That's a bit weird cos it makes you feel warm & then you feel like you've wet yourself (you won't have, it's just the body's reaction). They won't give you any results though as the doctors get a report.

It doesn't matter how much food you have it is just a wash type thing as such. You drink a few pints of a solution, and then that solution comes out the other end and takes the bits of food with it. The average stomach is empty 2hrs after a meal anyhow. I had no waves of pain and cramps just an urgency to poo. Think a straw helps to drink it.
It is so the bowel is nice and pink and clean and not with bits of food stuck on the sides that they are having to examine food debris. If you follow the instructions it'll do what its supposed to. I thought I'd be lightheaded and dizzy but I was grand, bit of a headache like someone else said.
Abdominal CT scan very quick. They ask to hold your breath (to stop you moving) for about 3 seconds. Then the machine might move down a bit and you hold your breath again, depending what bit of you they need the picture of. Then its over.
Have you a heart rate monitor or are you taking your pulse by hand? How often are you checking it.
Is the breathlessness and cough gone from before?

Thanks MrsPinot and Sadie. It sounds fairly straightforward and manageable - I hope!

Sadie, I've checked my pulse in the middle of the night when I've just woken up and felt really ill and then found either my pulse was racing fast at 112, even though I'd been deeply asleep - or, more recently, had plummeted to an all time low of 52! It's been 68 for years and years and years, at it's normal resting level. I'm just taking my pulse - no heart monitor. I had an ECG as the GP said I was having palpitations at rest and thought he'd better check it out but the results were apparently fine - so at least i know my heart is working properly - just behaving strangely!

I feel much more ill again now - possibly as I've been working and then doing school run and about to make supper for the DCs. I wonder if I'd get better sooner if I didn't need to do anything at all? My body feels as if it should be lying down in bed on hospital bed rest, a lot of the time but I haven't been able to give in to that and I'm only doing the bare minimum work and domestic stuff now.

It's such a contrast to life before all this when I'd leap out of bed at 5.30am, do a bit of work, get ready for the day and chivvy the DCs to get ready an then do the school run, work all day, pick up DCs, make supper, support them to do homework, sprint around with the vacuum or mow the lawn, do laundry, return to do more work in the evening, make more snacks for DCs, spend an hour chatting with them, do more work after they'd gone to bed.

At the weekends, I'd be up a ladder with a power drill or cycling and walking miles with the DCs or weeding a third of an acre garden, whizzing round to the supermarket, lifting and hefting bags of shopping, laundry baskets, furniture!

I felt so strong and energetic and could lift and carry things that even strong men stumble to lift. Now I'm this sickly, exhausted useless lump that can barely get through the day without needing to sleep. The frustration is huge. I'd so many exciting plans for this year - DIY in the house, garden projects, fun with the DCs, generate more work - and I've lost 2 months of my life - and counting.

Will I ever be back to normal?

Oh and the breathlessness and cough have come back as has the meningeal pain down my spine and the back/chest pain....yet the lawn remains unmowed and the house uncleaned....

What is meningeal pain? What age are DCs? Could they mow lawn, they sound pretty athletic but maybe too young to push the lawnmower. Is there a local older teen who would do it for a few quid. At least you wouldn't be looking out at it uncut.

Sadie, the meninges is I think the lining of the brain and spine and I had a lot of what I'm calling meningeal pain when I was in hospital 31 yrs ago with viral meningitis. I think it's the meninges that becomes inflamed with infection/viruses/flu etc. I've felt similar to when I had meningitis, since being ill at present but none of the appalling headache I had back then. However, the general ill feeling is similar to - but worse and lasting far longer, than when I was in hospital with meningitis for 9 days. That's why I'm so worried, as it feels as ifIi should be on 'hospital bed rest' but am having to do domestic and work stuff every day, as I have far more responsibilities in my life now and far less support than 31 yrs ago.

DCs are 13 and 14 but no way could they use the ancient, heavy, petrol powered lawn mower. It belches out smoke and overheats and usually takes me around 2.5 hrs to do all the mowing - back when I was at my usual level of fitness. DCs weren't as fit or strong as me - but of course are comparatively stronger now. DC2 has SN and no way could manage a lawn mower. DC1 is skinny and not so muscular. Both are deeply involved in exam prep. now and have little time to help domestically or be trained by me to do more tasks. I'd usually be letting them off all chores at this stage, in the build up towards their exams.

We don't have any neighbours we could draw on for help.

Footle, you are probably right about nature telling me to slow down. I don't see how that would work though, given the lifestyle I built up, where everyone relies on me for everything - from cleaning toilets to bringing in the money, to fixing the plumbing and being there, emotionally and totally, for the DCs. Everything falls down without me there as the keystone.

I felt so so ill again last night and DC with SN noticed and became angry and morose and upset. Wouldn't speak to me pre-bedtime. I think as I'd been a bit better over the weekend, DCs had begun to see a bit of my old self coming back and had dared to hope I might be getting better. It's a bitter blow to find I'm worse again - and also scary too, as any previous illness has incrementally improved, across time, not got worse and better and then worse again.

I wanted to promise DC that everything would be OK and that I would get better soon and life would return to normal - but I can't do that. Also, finding it hard, although understandable, that the DCs get so furious when i relapse, as I really want someone here to say, "You poor old thing. It's tough isn't it and you're doing the best you can and it's not your fault you're still ill". But most of the time, it feels as if the DCs do blame me - even though they do know it's not my fault I'm ill.

Hi Spin, did you have the CT today, did you find it okay.

Spin?

Hi Sadie and Moggie. Thanks for asking after me. Yes, I had the CT scan yesterday. It was fine really but I was totally struck by the waiting area, which had walls covered with leaflets about every cancer imaginable, plus 'facing end of life'. I found that really really off-putting and wondered why they can't have scenes from nature or something much more life-enhancing to the human spirit, than focusing on disease and demise. Obviously, every one else there was sitting waiting and worrying, like me and I do think we all needed a more positive environment!

Anyway, the procedure was OK - just what I'd expected, with a pump injection of dye to enhance the scan and then having to hold my breath at various times, whilst I was scanned at different angles.

I must admit I pushed the technician for any clue at all as to what he'd seen but inevitably, he wasn't allowed to tell me anything. He said it'd be two weeks before I'd get results!

I'm now worried that the consultant on Tuesday, isn't going to give me any information about what he finds at the endoscopy and colonoscopy and will wait till he has the CT scan results, before drawing conclusions. I'd been banking on some definitive answers by the middle of next week, which is a day or so before I need to pay the final money for our family holiday. The DCs had also thought mum would know what was making her ill by then.

I'm also getting the DC's bad cold and sore throat and wondering if this will compromise them doing the endoscopy? Can you still have this done if you can't breathe through your nose and have a sore throat/mucus in your upper passageways?

A very very kind school parent has now offered to help out with DCs and me if I want to have sedation. I'm still fixed on going without sedation, though, as I really want to be fully aware and alert, to ask questions and hopefully get answers from the consultant as he goes along and at the end and I'll need to be fully in control of myself, if it's bad news.

Meanwhile, the digestive symptoms haven't been quite so bad but the chesty/breathless, almost asthma like symptoms have been worse, the more work I do and the busier I am with fitting in medical appointments too. I do wonder if there are two completely separate things going on and that one of them is a post-viral syndrome/chronic bronchitis, that responds to rest/overwork, accordingly. At the same time, there's a digestive thing going on, that relates to on and off inflammation and is further exacerbated by post flu exhaustion.

If I just had some definitive answers at this point - preferably not terrifying ones, I could then make some plans. I don't at all mind changing my diet for the rest of my life and I could certainly pace myself better with work and other demands, although that wouldn't answer the issue of generating enough money for us to live.

I'm still getting chronic abdominal pain and a sort of acid feeling in the upper digestive tract, despite living off rice, chicken and prawns most of the time and only drinking water. But I feel less 'toxic' like if there were an infection going on in my inflamed guts, it's dying down now. Don't know how my guts are going to react to laxative induced diarrhoea on Monday, of course!

Glad it went ok, shame you didn't get any inkling of what's going on. I would say next week if they don't tell you anything that you are about to pay the final balance so could they see anything that would advice not paying it! They may just give a little clue then.

Hi Spin, everything points to gastritis to be honest. I have this ongoing and without the medication I'd have constant stomach pain, and a raft of other symptoms, I used to be vomiting a few nights as well. i didn't want to be 'on tablets'. But Doc explained that stomach acid is very strong and there is a layer in the stomach that protects it from the acid. Sometimes the acid can get through to the flesh of the stomach and inflame it. So it is better to take the medication to support the healing/maintain the stomach lining than to refuse to take medication and have the lining of the stomach constantly under attack from its own acid. I still have low level stomach pain pretty much all day-not enough for pain killers but twinging away there. If I didn't know what it was I'd be worried sick.
you could have a simple h pylori bacterial infection in the stomach, easily treatable.
Have the sedation maybe? You won't be talking during the endoscope, will you will be in a position to speak to the consultant during the procedure. You could say to the nurse beforehand you are a single mum you have a holiday booked and you need to pay that week and could she ask the consultant just to tell you if any treatment will interfere with that.

• you have not and have never had bloody diarrhea
• you show the signs of gastritis
• you are showing signs of getting better rather than worse
• the word 'toxic' is an idea in people's heads. The word should be banned. It is bandied about by various industries to make people buy products or buy into concepts.
• you are an absolute classic case for Burnout (google the physical symptoms of Burnout and it's like reading some of your posts).

The parent who offered you help if you have the sedation, you describe as 'very very' kind. Well done for saying it to her, people are delighted to help. You reached out a little bit and someone offered you support. Why is she very very kind and not just plain kind. Why would she not be kind to you? You are worthy of someone's kindness at least as much as any one else. I know you feel alone, but you are not alone, we are here thinking of you.
I've taught self-compassion as part of a class before, I developed these statements. Some people found them useful.
• Every person is of equal value, regardless of their circumstance.
•Anyone else who was like me, who had been through all the situations I have been through, would most likely feel exactly the same right now.
• It’s unhelpful of me to expect myself to be a particular way, or to know how to do something, if I don’t have the knowledge, support, experience or resources to be like that. Or if I didn’t have them when I needed them when I was younger.
• Suffering and struggling are part of the human condition. It’s unhelpful to expect to be ‘happy’ 100% of the time. I can expect to feel any number of emotions at any time of the day.
• At any point in my life, if there were other ‘better’ options I felt were truly available to me at that time, I would have taken them.
• Maybe in spite of everything, I am doing okay, considering all the challenges life has presented me with.
• I can be nothing more or less than what I am right now this second.
• Maybe I am enough.

Anyway end of today's lecture! Keep us posted. take care.

I keep checking in to see how you are doing. I hope you get some answers soon from the results. Thanks for updating.

Even with sedation you'll be able to talk to the consultant. It makes you dopey for the procedure and a while after, but you'll be able to sleep it off for a bit and then they will speak to you.

It would be a good idea to take a notebook with you to write down what they say as it's easy to forget the details.

The CT techs are not allowed to say anything about the results. It would lead to lots of anxiety and panic as then if they didn't tell someone, that person would interpret it as bad news. Anyway, they are not qualified to interpret the scans, their job is to do the scans and check they have a clear picture etc.

I assume the two weeks is for a letter from your consultant. The scans are available electronically within a few hours. That doesn't guarantee that they will have looked though, so don't set your heart on full results. I can't imagine they wouldn't tell you what they've found on the endoscopy/colonoscopy on the day though. They may need to do lab tests, so those results will be longer.

Anyway, glad the CT is done and dusted. The leaflet displays are a bit much. They're obsessed with providing support, but I think it would be much better to have leaflets available in a quiet area somewhere, and have posters in the waiting areas saying that leaflets are available if you want them.

At 12 and 13, how much exam prep do they need to do?! They're presumably not taking any external exams. I'm sure they could fit in some chores as well. Cleaning the loo takes less than five minutes. It is their house too.

I think you need to try and hold off on diagnosing yourself for now. There are so many possibilities.

Thanks for the wise messages of support - all really helpful.

Thanks to everyone again for your word of support. Sadie, I liked your statements for self compassion. You clearly know your stuff!

I googled 'burn out' but couldn't really see myself in this - except I have some of the physical symptoms - but then they could be directly related to whatever physically based illness is going on. I don't really fit the emotional symptoms pre or during this illness. Before I got ill, I was really happy with my life - even though I was very busy. I felt in control of everything, full of zest and energy, was finding parenting easier as my DCs got older, I love my work, which was/is going well. I relished each day and had so many exciting plans for this year - things I still really hope to do, if I can only get better!

I've always been able to juggle a lot of stuff but keep happy and healthy too - until now - and what's going on just feels a really physical illness - not based on 'burn out' at all. I love/d feeling independent and not reliant on anyone, including a partner and often consider myself happier and luckier than people in dysfunctional relationships.

The only time I've wished I had more family around is since I've been ill. Otherwise, we've enjoyed a happy family life of three and never felt we're missing out. I know sometimes when there isn't an instant diagnosis for an illness, people - often women - can then get labelled as having psychological issues but I find that quite abusive and unhelpful and have seen others suffer from this and then find out later (there are stories on MN about this) that there really was a definable physical illness after all and the person wasn't just stressed or burnt out.

So I appreciate your ideas, Sadie but can't recognise myself as being in that burnt out category. I'm really keen on your idea that this is just gastritis however. I hope it's something more straightforward like this than anything worse.

I still don't understand why the digestive symptoms are wrapped up in the more flu-like symptoms. I'm still getting pain inside my spinal cord and neck area - like when I had meningitis - and still got a slightly worse dry, bronchial cough. As those symptoms come and go, so do the digestive ones but the stomach stuff is currently at a manageable level and if it were only those stomach symptoms, I could seem me coping without any intervention - unless they got worse again. I don't know if pancreatic pain can manifest as chest/back ache and breathlessness/cough but I think it might.

I felt quite a bit better most of today but as it's got later and I've done quite a lot of things - work, school runs, made supper for DCs, done more work - I'm feeling all the usual symptoms worse now - like my body is saying - just stop - but my mind is wanting to go on. I really want to get stuck back into my normal life as I enjoy it and am frustrated at not having the body strength to do as much as I usually can.

Martha, the DCs go to a v academic grammar school and there's masses of pressure for end of year exams where all DCs are expected to spend the entire half-term working flat out revising - and also in the weeks leading up to this too. They're used to this but I would normally expect a lot less of them domestically, at this time, as I don't want to add to their work. DC with SN is more willing to help but pretty useless because of dyspraxia. Other DC is less willing and I don't feel able to have that confrontation at the moment.

I usually want them to have down time to recharge after studying, which is probably why I've not trained them enough to help out - but then I've always, until now, had plenty of energy to do it all myself. Especially right now, I'd rather they 'lost themselves' in TV or browsing the internet, after finishing studying, rather than focused on me being ill - highlighted by them having to help out more.

I've not had time from cultivating friendships as my priority has been the DCs and working enough to take care of them - but this hasn't bothered me as I love my own company. Again, it only 'doesn't work' if I'm ill and need support myself - so I do see how it would have been better to ensure I had a network around - just don't see how I'd fit that in and work enough to raise my DCs on my own.

I hope I get some answers next week. I hope the most awful things can be ruled out but I also don't want no diagnosis and months and months of further tests. I had no idea medicine was so 'slow' and 'stab in the dark/process of elimination' until I'm experiencing this now as a patient. I'd not had much to do with health services and assumed that a well trained consultant or even a GP would often be able to go, "Ah yes - it's very likely to be X rather than Y or Z - I've seen loads of patients like you over the years and all the signs show it's X".

I know of course that nowadays no one dares jump to conclusions and abrupt diagnosis, for fear of being sued - but it would really help me if I could have the same kind of response I might get from a skilled plumber or a mechanic,w here they usually 'diagnose' on the spot!

Your experience of diagnosis is quite unusual. Most people would have been given some indication of what it could be by now, but your symptoms seem less straightforward. I don't think it's anything to do with being sued, it's because they genuinely don't know yet and need further test results.

I don't think anyone is suggesting a psychological aspect to belittle or demean you. It is a genuine possibility. I know that it can be a way to dismiss a woman's health problems, but it could also make sense that women are more likely to suffer stress-related conditions because despite it being the 21st century, we still tend to bear the brunt of childcare, family responsibilities and so on, as well as having careers. That's even more the case as you're a single parent with no support.

Just because you have been happy with your situation, doesn't mean that your body has been. Stress isn't just in the mind. It is a physical state.

Have you told the school what is happening? They may be able to provide some support to the children and a bit of leeway about the exams if necessary.

Anyway, all the best. Try and take it easy.

Thanks Martha. I guess the body and mind are closely linked - it was just that my subjective experience of life, pre-illness - was happy and contented.

Yes, the school knows what's going on but I've also told them not to tell the DCs that they know as the DCs are better having a 'sense of normality whilst at school. I've separately asked the DCs again if they want to talk to anyone themselves about what's happening but they really don't want to at all. I'm sure the school will be lenient if they don't do OK in exams and to be honest, I've told the DCs that the exams are absolutely nothing to worry about, especially at present.

I was absolutely decimated by exhaustion and worse symptoms late last night and up till now, today. I am beyond tired. I ended up googling chronic fatigue/ME, as it felt like that - and yet again, I seem to fit a lot of those symptoms - except that there's the separate digestive symptoms that have been a lot worse than you get in CFS/ME.

Anyway, it was stupid to look into that as it confirmed this as a life long, incurable illness - and I can't even be this ill a few more weeks, if we're to retain our current family life as it is - as we rely on my ability to work and earn. The websites also talked about it sometimes taking years to diagnose - and again, I NEED to know very soon what on earth is wrong, as I need to start making life changing decisions based on this.

DC with SN was upset and crying and angry earlier - with me - and I was trying to say, let's be angry with the illness, not me, as it's not my fault. They don't quite get it and I said it was also understandable to be angry with me of course. But I'm finding this SO hard. I'm struggling to keep life going on as normal for the DCs and then from time to time, they just get furious that I'm still ill.

I'm not quite sure to what extent to talk to them and ask them to help out more, practically, and to what extent to try to keep things as normal for them. If I bring up my illness at all or question whether or not we can do something they want to do, DC with SN just gets tearful and very angry and even said they'd rather be taken into care than look after me. I know they didn't mean it - but it's very hard to hear this, as I'd give anything to be well and normal for them again.

It's really weird that after feeling a bit better on any one day, I then seem to feel massively worse again - especially with exhaustion, bronchial type cough and spinal ache. Yesterday, I'd begun to think I could mow the lawn today - now I've barely been able to get out of bed at all - although I'm picking up a bit now - but have lost half a day. It's very frustrating and each time this happens, I get scared again about why I'm not getting progressively better yet.

Hi all your symptoms could be autoimmune thyroid related, have you had this tested?

Did you also have b12 tested? Me/cfs can be recovered from by the way though it may not be that all, as above poster mentions hypothyroidism has similar symptoms! In the meantime the idea of 'pacing' might be useful to you. So you don't run around doing lots when you feel ok you pace yourself to take things at steady rate so as not to suffer the 'crash' the next day.