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"

Yes I know what you mean about taking meds, I hate it too, I really do.

I was thinking more along the lines of lansoprazole or something - think it was something like that - which if you have some sort of pancreas issue is often prescribed to help with the attacks.

I really hope you get somewhere very soon now.

unless your so ill your admitted to hospital ,it will take ages to get a diagnosis.
ive been waiting 12 months and still more tests and no answers.

Moggiek, my wee seems normal. In fact having given up tea and coffee completely now for the last 5 weeks I think, I'm not feeling the urgent need to wee every hour, as I used to have. It's not dark coloured or anything either - so not dehydrated and no blood in it.

Psip, what's lansoprazole like then? Is it a fairly mild drug?

wfrances, why is it taking them so long to diagnose you? Would that suggest that medicine is very far behind in this kind of disorder and is kind of fumbling in the dark for one of several possible answers but on an elimination process rather than diagnosis process? I'm hoping my consultant is going to hear again about my symptoms and go - "do you know what - it's x not y or z because I've seen this profile before and you fit that description".

Surely after years of training to consultant level, a doctor can get a pretty good idea of what the diagnosis is, especially when looking at the whole patient too and the background context?

I want a diagnosis before the end of May, plus some treatment!

It's a PPI (Proton pump inhibitor - whatever that means) and it's used for people with gallstones.

I think it is worth asking about perhaps if you are being seen this week. Though it may have contraindications depending on the alternative things you might have, iyswim.

My mum had to really push for a referral to have her gallbladder out as she kept getting very very painful attacks, and they kept her waiting on this drug I think hoping she wouldn't make a fuss

It did help somewhat though.

Should have said they also use it for folks with ulcers, indigestion, other issues but similar area.

That's a good sign, Spin. As for the length of time to diagnosis ... I was diagnosed with IBS for YEARS, despite having a couple of trips to A&E when the bouts were really painful. Eventually, I paid £600 to LifeScan who discovered a sizeable tumour in my pancreas! I was incredibly lucky. It wasn't malignant, but it did have to be removed. I did have Bupa cover, but when it became apparent that surgery would be necessary, my consultant explained that no insurance company would ever pay for surgery of that magnitude and that it would be carried out on the NHS. That was seven years ago, and I haven't looked back, or had a bout of IBS since!

Thanks for explaining Psip.

Moggiek I really hope I am actually going to recover from whatever is going on as I can't go on much longer like this.

Doe anyone know of any online forums for helping older DCs when parent is diagnosed with a chronic illness? I am increasingly worried about my DCs. The one with SN was actually crying last night and wouldn't/couldn't talk to me at all - despite rarely ever every crying at all. I tried to put into words what I thought they were feeling - that they were angry with me and the illness and it was OK to be angry and that they probably then felt guilty about feeling angry and that they were probably worried and upset.

I told them I understood that they really need things to be predictable and in control and that everything happens as normal and they're finding it unbearable that it's not like that now. I said that even if they are furious with me and the situation, I will never stop loving them and even if they want to blame me, even though they know it's not my fault, that this was OK too.

I wanted to be able to say to them that everything would be OK - but I couldn't say that but I did say that I am doing everything possible to keep everything as normal as possible for them and will do this as much as I can.

Still no words from DC who was very withdrawn and went to bed very morose and tearful. I feel absolutely terrible that my DCs are going through all this. I've never ever not been able to make it all OK for them, with me as the centre of a safe, secure universe. I didn't have to face my own late parents' decline until i was well into my 40s.

As I was talking to DC, I felt terror inside about my own future and theirs and of course can't reveal this to them. I think I need some help with helping the DCs as they're still adamant they don't want to speak to anyone themselves about it at all. I am the person they'd always come to if they had a problem - but now I am the problem. I find this excruciating as a mum.

I woke on and off all last night in pain and sweating and feeling I needed desperately to get to a loo but didn't want to wake the DCs who always wake if I come out of my room and so I managed to ward off the urge.

I feel lightheaded today and I've lost another 2 pounds in weight which is scary. If I don't eat, then some of the symptoms aren't so bad - but also I feel weaker.

I'd pay anything today just to talk to a specialist consultant but even with paying the fees, I still have to wait till Wednesday night. I need to be OK so my DCs can be OK. I'd do anything at all for them to be happy.

Spin, it's me Psip. I keep wanting to ask where you are, in case one of us could possibly help with anything, but I don't want to intrude.

If you would accept any help then I am another single parent and I'm in the SE (not London), PM me if we are nearby. I would do whatever I could.

I can almost guarantee that if someone started a thread asking for practical help, you would have floods of MNers in your locality who would organise some sort of assistance.

Is it worth a try?

I agree spin. I asked where you are earlier in the thread as I was wondering if any of us might be near you. I am in West Wales.

Hi Spinstar, I am sorry you are going through this, physically and emotionally. Your thoughts about your situation are wreaking havoc in your mind and causing you more problems on top of your physical ones.
From a CBT perspective (I have some CBT training) it may help to remember that your thoughts are just that...thoughts - bunches of neurons firing together. Our minds are a sense-making machine. Our minds seek 'answers' and 'reasons'. If our mind hasn't got a reason it makes up a reason. If you are of the control freak flavour (I say that as one myself) this will be a bad reason.
You have not, I repeat HAVE NOT been diagnosed with a chronic illness...you have not gotten a diagnosis yet as far as I am aware from your posts. Your mind is telling you that..because its looking for reasons for your symptoms. A famous quote from Emo Phillips - 'I used to think my brain was the most wonderful organ in my body...until I realised who was telling me that.' Your mind is trying to protect you and those you love by jumping into the future, envisaging the worst case scenario and trying to protect you all from that.
Also your DCs are NOT facing your decline! "I didn't have to face my own late parents' decline until i was well into my 40s." Again this is what your mind is telling you and you are believing your thoughts to be true.
You may still have a very simply treated gastro inflammation. No diagnosis of anything has been made yet. I know you physically feel awful but view it as a tunnel that you will come out the other end of and life will go on.
I'm not sure why your DCs are so upset. I'm not sure what you mean when you say the DCs don't want to talk about it to anyone...talk about what exactly, that you haven't been feeling well for the past few weeks? What is it they are going through - that you can't go out and about and do activities is that it? Everything else, school routine etc is just the same for them, is it not? Is it because you are lying down all day instead of doing normal things?
The reality is everything will be OK for your DCs. Things mightn't go the way you wanted or you envisaged but that doesn't mean they won't be okay. You have a need for everything to be predictable and be in control of everything, and that's really really understandable because of the situation you are in being the sole carer of your two kids.
I hope I don't come across harsh or lacking understanding to you, I really am not like that in real life. If you were my neighbour I'd be over to you like a shot. I am trying to help you keep your fears beaten back a bit.
At our age (50ish) we have to accept that our bodies will get ill or a bit worn out here and there over the next 30-40yrs, and need some support or interventions from time to time. Plenty of people get sick and get better, that is the norm. It is medications and medical interventions that have meant people live longer and increase life expectancy rates.

Spinstar,

I wanted to give you a chink of hope. I'm 36 years old and a mother of two. I have severe ulcerative colitis and some other chronic health problems that have left my physically quite disabled. I am currently sitting on a balcony, watching the beach and enjoying my holiday. I work full time in a job that I love. Despite my illnesses, I am able to live. I'm not anything extraordinary either. I am settled on my medications and suffer few side effects. My colitis is well controlled.

Please don't stress about the unknown especially when it is so unknown i.e. not even being diagnosed yet. There are so many people living with chronic illnesses that you don't even realise that they do because life goes on and it cam even be good!

Many thanks for such kind and supportive messages that give me hope. Sadie - what an inspiring and sensible post! Thanks. I needed to hear that and also, Tenerife, to know that people with chronic illness can lead normal and happy enough lives.

Yes, I don't yet even have a diagnosis and I'm already planning ahead for a lifetime of disability or even my own demise. I think at the times I feel extremely ill - which can last for hours but does then improve for a bit - I feel so deathly ill - more than ever in my life - that I then sink into despair - especially as it's gone on so long with no respite or treatment and nothing like near my normal level of health.

The issue for my DCs is most of all about our summer holidays I think - which is probably as far forward as teens can think. We rarely go away and we've never been abroad and this year I booked a UK cottage hols to make up for not going away last year and the fact that they never go on any school trips as I can't afford it as a single mum. They've been excitedly waiting the whole year for this holiday, which is a full on physical activity hol where they can only do all the things planned if I'm doing them too, as they're under 16. So all the activities won't happen, even if we did get away, if I can't participate.

This will be the one time in the year that we have any quality family time or any holiday. DC with SN has been obsessively counting down the days before the hol and has a whole set of school exams to get though before we go -(if we go) and has been holding onto the thought of the holiday as the thing that helps to get through exam stress.

If we/I can't do the activities, we will barely be able to do anything as it's geared around us all being physically very fit and energetic. DCs are realising that this may not now happen but can't even speak about it, as it feels so dire to them. I think they're not looking further than this summer, actually and not realising that, if I'm very ill, there may be no normal life at all in the future.

Both DCs are v reliant on me for DCs of their ages. They never meet up with friends outside school and rely on me really to do things with them and won't even do things as a pair as they don't easily get on with each other (and one has SN). So I am the glue that holds the family together and the engine that drives their lives - not their peers. There is minimal other family and they're not available or nearby unless the worst happened and one of them will then take over care of the DCs - but rarely sees them at all and doesn't really have any kind of close relationship with them.

This is why it's hitting me so hard and the DCs too as we've been a self-sufficient threesome for so long. There are other school parents who I know would help with lifts and even a one off overnight help - it's more that the DCs - especially the one with SN - would find it so so hard to be away from home and usual routines and finds it v difficult to get on with peers.

There isn't much anyone can help with in any case right now, as I'm still managing to shop (mostly online and then delivery) and do laundry and minimal work and cooking. However, the house is a pit - and I'd pay cleaners to come in and deep clean - except that it's far far far too messy and cluttered for them to get near any surfaces and I've also been feeling literally too ill to have anyone in. There are various broken items too in the house that need fixing/changing and even the thought of a cleaner seeing them makes me embarrassed (eg you can't flush the loo except by taking off the cistern lid and pulling the wire in there as the flush handle broke ages ago).

I'm stuck in this vicious circle of not feeling well enough to do more than minimal domestic support and minimal work - so not feeling 'prepared' for anyone - even a stranger - to come in here and do anything in the house.

The other big difference for the DCs that they're finding hard is seeing me weak and at times upset. They're used to me being both the man and the woman of the family - climbing ladders with power drills, hefting heavy furniture, breezing around multi-tasking in the time it takes for them to do one small thing. Now the lawn is un-mowed, the floors un-vacuumed, laundry piled up in clean heaps on the floor and every few hours, I'm practically unable to move at all. This is really unsettling for them - and for me.

Thanks for letting me off load like this. I felt better for a few hours this afternoon and actually stood and cleaned out the fridge that had rotted food in it! Felt v proud. Now I feel really ill again but have eaten less today and am hoping this might make tonight easier,a s there's less for my faulty stomach to digest. Got to be OK to work tomorrow, do the school run and do a 1.5 hrs round trip tot he GPs for 10 more blood tests. I'm also hoping they're willing to give me the chest X ray results at reception - as I don't get to see my GP until Friday.

Really well done for the fridge...I am avoiding that and I'm perfectly well so total kudos

Reading about your house reminds me of when I was last pregnant. I was 38 and it was the worst of my three pregnancies...I was in bed for most of the first half, I could barely do anything, as I felt so so sick all the time. I had a lot of muscle pain too I nthe second half.

Basically the house was awful - very few people saw it, but those who did had to hide their disgust - stuff like your loo handle not working sounds so familiar to me, our bathroom sink was covered in melted soap which I couldn't even summon the energy to clean up.

It was so depressing, water came into the roof and ruined things, but I couldn't move them out of the way. I was just a beached fish. My children were 9 and 4, they had to feed the pets and eat sandwiches the 9yo made, quite often...it was appalling. I was scared I'd never recover too. But I did and very slowly things got back to normal (which was messy anyway!)

A few scars remain from the neglect that crept into our home, for all of us - but we have moved on. You will do the same. I would not give a toss seeing a house like that, in fact it would comfort me to see that I wasn't alone I imagine cleaners would understand too!

Anyway just rambling but I hope it helps slightly. Thinking about you and hoping you have some sleep x

Hi Spin

I am so sorry you are feeling so ill. I just wanted to let you know that last summer I was having terrible stomach issues. I too had the Calprotectin test and it came back at 200. I was beside myself with worry. I got to see a GI consultant who said altho it was raised it was too low to be anything of concern and diagnosed ibs. I couldn't settle so about 3 month later I pushed for a colonoscopy. The consultant who performed the procedure said to me himself that he was not going to find anything wrong with me and that the level was too low to be of any significance and that I had ibs. Sure as anything all was clear, nothing to be seen at all. After that my stomach settled down. I hope Thai maybe helps a bit and gives hope that it's not anything to worry about.x

Spin I am another one who has gone through periods of not being able to answer the door due to the state of my house when ill. what about an ad in the paper or something for a mothers help.

I think your kids are too old for surestart but I had a sure start mum come in when I was ill. She said she was well used to houses in a state when a parent was ill. Mine was a proper state.I wonder if your GP could access help for you.

You can self refer to social services too (they are there to help honestly!) and can sort assistance for you.

spin still thinking of you

Spin just wanted to say I'm still thinking about you although I don't get on very often & post even less. I found the leaflets & information on the NACC website really helpful when I was first diagnosed & my consultant & IBD nurse also give copies out. There's one about living with IBD & supporting a family member with IBD & some of the information in both could apply to any chronic condition. You are right, there isn't a cure for IBD although maintenance & treatment can be very effective. The problem is everyone is different & the disease affects all of us in a different way. However, new drugs are being introduced & there is hope that there will be a vaccine soon - not sure if that will also be a cure as well.

Am I right in thinking you will be seeing the consultant tomorrow? If so I hope you manage to get some answers. Please let us know how you get on.

Thanks again everyone. First - my chest X ray came back fine - so it's not pneumonia or lung cancer. I had 9 vials of blood taken at the GPs today and hope the results might be back tomorrow before I see the GI Consultant tomorrow night.

Feckoff, thanks for sharing your own experience of a cluttered messy house. It does make me feel better to know I'm not the only one in this state at home!

Nickers, I can't bear the thought of week and weeks of tests - I really want to know NOW what's wrong and get a handle on what can be done about it. However, you're right that I need more help from the DCs. The one who is least able, is most willing but the thought of training and supervising them now, when they've never really done any domestic support, might be too much for me at the moment. They have school exams coming up soon too and are getting masses of homework every night and weekend and I'm trying to make things as normal as I can for them. I'm not sure I can face their fury if i tell them to help out more but they are doing a few things more for themselves, like fetching something from upstairs for me and putting plates in the dishwasher.

The activity hol. isn't an 'organised' group thing - just us hiring bikes, canoes, wild water swimming, climbing, long country walks, riding etc etc. The aspects where we hire stuff like canoes say you have to be fully supervised by an adult if under 16 - which means they rely on me and if i'm not fit and well, they can't go off trekking in the hills alone, leaping into mountain rivers and lakes or out for a day on a bike in unknown countryside, as they'll need me there alongside them too. So it's really reliant on me being my usual strong self. They've waited all year for this and I've already paid up front and don't have any holiday insurance/can't get the money back for the UK cottage in any case.

Confused, it's very kind of you to offer support. I'd rather not say where I'm based as I like to keep my anonymity - but another school mum today has offered to help out now if I need to be in hospital or have an appointment and she can pick up the DCs. The problem really is that my SN DC doesn't get on with her DC and is a bit of a target for mild bullying - so this is why it's not ideal for my DCs to go to someone else - but may have to happen at some point.

Carrie, thanks for letting me know about social services - I hope it won't come to that but I just don't know.

Ecudador, many thanks too for thinking about me. I almost fainted at work today - which wasn't great and made me fearful of not being able to work at all. I'm down to 50% of my normal hours and income and I just can't go on like this as we need the usual income to survive.

I don't know if not eating or eating is making me worse now. I ate less this morning and yesterday and in some ways felt better in my stomach - ie less 'urgency' to go to the loo - but in other ways, more weak and dizzy. Then I ate chicken and rice later on and my headache nausea and stomach pains got worse. I'm still waking at 1.30am and 3.30am or thereabouts, every night, with a racing heartbeat, not even feeling anxious as I'm waking from deep sleep - yet soaked in sweat. Whilst that could be perimenopause, I've been perimenopausal (but still get periods) for about 2 yrs and had no symptoms like that at all and no hot flushes and this seem directly connected to the stomach issues.

Biologically, why would I get a headache if I eat and get a back ache too? Is that my immune system 'protesting' at the food in my inflamed guts and colon?

I really need to do a list of questions for the consultant, although I don't know how long I've got with him this time as it's a follow-up appointment, so likely to be shorter. My top priority is to arrange some diagnostic tests but I'd also like to understand his theory of what might be going on and if there's anything I could or should be doing in the meantime.

Non-SN DC has just asked me about my illness and I told him that it might - or might not - be Crohn's disease or ulcerative colitis - but we still have no idea. Non-SN DC seems to want to know much more than my other DC who can't really face it all and gets upset. Non-SN DC said "Oh that's what Dynamo has isn't it? Crohn's disease?" So seems to have some idea of what might be going on from a TV show presenter/magician.

If it's IBD, is it also normal to have parts of the day when you feel better and parts of the day when you feel so ill you just need to lie down? Why would that be? If the symptoms fluctuate, could that mean somethings you do, correlate directly with symptoms or if it just a changeable condition across 24 hours and whether you're eating less or more or moving around less or more, it just flares and calms of it's own accord?

Spinster, these are all veryvsensible questions...is there a medical website or someone qualified to answer who you could phone? I really wantbyou to get some answers, it has been far too long.

Great about the school mum offering to help. Perhaps she has contacts/a kind mum who can help and lend an extra pair of hands with your DCs? When I had to go into hospital I asked one person for help. She had a lot of contacts. The whole village seemed to get involved! There were rotas for looking after the DCs while DH was at work, and when I got out of hospital, cooking us dinners, giving me lifts and people would leave gifts on the doormat!

Just wanted to jump in and say that my dad has had ulcerative colitis for over 20 years, and a friend has Crohns - I only know about both of them because theyve told me, the medication for these conditions has really come on in the last decade :)