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"

oh what a royal pain in the backside. If you went back to your GP surely they would be able to contact the consultant for a word about what you can have re pain relief and acid control in the meantime? If you tell them what you have told us, you are in utter despair, losing weight, in severe pain and discomfort that affects your quality of life, frequently utterly exhausted to the point of having to be bedridden, your children are frequently worried, upset and concerned about your health, worrying on a daily basis about what will happen to them if you are ill and you have no money. That its impacting their school work and their social lives as you can't take them to activities. Can just about manage to do school runs, can only do very basic cooking and domestic chores at home, can barely work so have difficulty making ends meet and are eating a very restricted diet and terrified to eat anything else in case it exacerbates symptoms. That you are now frequently getting very bleak and depressed and sometimes very panicked regarding fears about your uncertain future vis a vis a possible chronic illness and the fact that your life has changed utterly beyond recognition. And that you have had to manage all this alone and have been afraid to take any medication not even paracetamol without the consultant's go ahead. And please please can they do something.
If I was your GP and I heard what you are experiencing I'd certainly try to lift the phone and put a call into someone on your behalf. Going back to the GP will only speed things up in some shape or form surely.

I agree with Sadie, you must go back to your gp. I am appalled by the delays you are experiencing in getting a diagnosis, appalled by the fact that you haven't received any treatment despite such severe ongoing symptoms. It's time to dig your heels in and demand that your gp follows up your results, or at least prescribes something to relieve your symptoms.

I live in a developing country, and have never heard of such delays and messing around even in the public health sector. The private sector here is excellent and results never take more than 3/4 days. The two sectors are separate, so neither holds up the other - consultants choose whether to work in public health or private.

Hope you get some relief soon.

Thanks Sadie and Urbin. I am just gobsmacked at the long long delay to have a diagnosis or any treatment. I keep waiting and expecting to hear back from the consultant's PA in response to my emails asking for some guidance and offering to pay to see him for a consultation - but nothing yet. I feel like he'll think I'm becoming a 'difficult patient' that I've even tried to contact him at all and am aware that he must be busy dealing with people who may right now be dying of bowel cancers etc. So I'm worried to push too much as I may well end up with a diagnosis of something very minor by comparison.

In the light of that, I'm thus hesitant to make a GP appointment, which would be a 3 to 4 minute one only and probably not till the end of next week or beyond. Knowing my GP, he's just so likely to say he can't suggest anything until we hear more from the consultant, as he's clearly told me before that we need to wait until I get all test results back. If I push to see him, he'll be impatient and irritated and to be honest, 'managing' difficult medics is a whole new part of managing my illness that I could well do without.

In the meantime, I've sampled tiny bits of new foods to see what effect they have and so far, no discernible exacerbation of my symptoms and no further diarrhoea - quite the opposite really. I've tried more carrots, apple, kale, blueberries. I've still got the same on going pain - but since the last few days, haven't had the horrible acute upper gut acid - just a low lying continuing feeling of being bruised and wounded in the guts.

If I were now to diagnose myself, I'd say that I had a specific and acute horrible illness which included all the flu like symptoms. I think my body is gradually recovering from the flu like part of it as I'm not currently getting shivers/sweats, racing or v slow heartbeat and I'm also sleeping better now too. If it weren't for the abdominal symptoms, the rest of my body feels as if it's 75% better.

But whatever has gone on - whether a flare of colitis, H Pylori, something as yet unknown, my digestive system is messed up and nothing like normal at all. I never know from one day to the next whether I'm going to be up in the night with diarrhoea, partially incontinent - or just the opposite - constipated.

From what I've read, this now sounds like 'ordinary IBS' and I guess I'm now working on the assumption that this is all I now have, as a long-term side effect of something really nasty that started all of this off. from time to time though, especially when the pain is really bad and I have diarrhoea in the night, I feel worried that there is an untreated condition continuing and causing me irrevocable adverse changes to my health and why the heck can't I just get diagnosed and treated after almost 12 weeks?

I have no idea if I've even been investigated for H Pylori at all, which I think is a possible/likely diagnosis. If that remains untreated, it can cause worse stomach ulcers.

So I'm a bit stuck. I know what happens when male medics label female patients as difficult, if they assert themselves and I'm reluctant therefore to keep pushing the consultant - yet I think a GP appointment may result in further frustration and still no answers.

Don't think private is the answer to all! I went private and I still have no answers. I get bouts of diarrhoea and severe nausea - normally around 3-4 weeks at a time then nothing for a month or so. I lose a lot of weight in that time.

I have had all the tests. I have reflux with mild oesophagitis. To me it sounds like classic IBS except I can't be diagnosed with that because my inflammatory markers are raised when I get the bouts and I have other inflammatory symptoms (like sore joints) at the same time. Except every test (coeliac etc) is negative.

This has gone on for about 10 years! I don't even bother to go to the GP or gastro now as they say there isn't much more they can do and at some point, another symptom will appear that will point them in the right direction of which inflammatory condition it is!

Good luck to all but my suggestion would be to try and manage the symptoms as best you can as it can take years to find out what it is.

Blimey, Foxinsocks - I'm totally shocked. Are we in the 21st century of what? How on earth can modern medicine still not be able to diagnose these things, even, in your case, after 10 years? Is there no funding left to do research into stomach related disorders?

God, you poor thing. And I thought I had problems!

Until I got ill, I was always, in any case, a 'manage it yourself' sort of person and perhaps that's what I'm going to be left with at the end too. As far as I know, other than raised Calprotectin levels, I've had no other markers of inflammation but of course am still waiting for something more definitive from the biopsy results. I haven't got any sign of inflamed joints or joint pain either.

However, I'm absolutely certain that 'something' suddenly and acutely occurred - not an on-going, rumbling-on life-long condition because one minute I was healthy, happy, strong me - and then suddenly, I was seriously ill for the first 2 to 5 weeks - and now I'm not so acutely ill but still nothing like my normal self.

If I were 30 years younger, I'd consider going into the field of research into digestive disorders myself because the more I read about them the more it seems that there's not really a 'cure' and often not really a proper diagnosis - only 'management and coping' or horrible side effects from drugs that dampen down the main symptoms. I fully expect that in another 50 to 100 yrs time, medicine may suddenly come across more specific diagnoses/causes of these things, like they did with Helibactor Pylori - and realise that if only they'd given us x/y/z treatment, the whole thing could have been cleared up in a few weeks and we're returned to full health.

Are there any medics or nurses on here who might be able to make some informal input and voice their opinions?

the thing is spinstar, when they have done all the tests, what can you do

they've done all they can, biopsies, blood tests, the works. Nothing comes up that is a recognised condition. When I have the symptoms, I stop absorbing vitamins, get v low/non existent vitB12 etc., my inflammatory markers shoot up, I feel really ill and struggle to eat properly (though I make myself so I can carry on and keep working etc.) but the minute it goes, everything goes back to normal. They were absolutely convinced I was going to be a coeliac because all the symptoms (including rashes on joints etc.) were so typical but I'm not :).

It's very frustrating but I don't think there is much more that can be done.

I have money on a condition somewhere between IBS and inflammatory bowel disorder but let's see. Either that or some horror bug/parasite I have picked up on my travels that has never left me and they just haven't picked it up!

I agree with the something happening thing spinstar and the lack of research in this area. Because they can treat symptoms, I think they tend not to worry so much about why things are going wrong.

for me, I picked up bacterial dysentery when I was travelling as a teenager. My digestive system was never the same after that.

Hi Fox - I had amoebic dysentry in my twenties but fully recovered from that in a shorter time than this illness is taking. Then I got cryptosporidium 7 years ago but again recovered fully from that. I've never had IBS type symptoms and always had, what my late mum called a 'cast iron stomach'.

So I don't understand on the pure logical level why something - as yet undefined, has caused 12+ weeks of illness and symptoms, not been detected, not been diagnosed and not been treated.

Could it be that after getting some kind of infection or parasite, if not investigated at the earliest stage, the 'entity' goes underground, hiding inside our systems, evolutionarily developed to do this really well - and so can't be picked up by standard blood/stool/biopsy tests - but continues to affect us lifelong?

If I were a parasite/bacteria, this is what I'd do!

I feel defiant in the face of suffering today, although I've got more acidic stomach coming back in my upper guts. I'm carrying lots of heavy stuff up to the loft and what I find so weird is that the rest of my body feels almost normal, whilst my guts feel as if they're working against me.

Hi spinstar, I did see some research saying that a lot of people develop these issues after a major gastro illness. I too had a cast iron stomach before I had dysentery. Took me 3 months to recover from that.

I lived abroad for a while and part of me wonders if I have a parasite or bug they are just not testing for. Or one that they don't have a test for yet because that is what it feels like!

It's very debilitating though. It affects my moods when I have the bouts - I have to keep going to work but I get stressed commuting as my trains don't have toilets and I don't feel like eating so it's exhausting and I force myself to eat food even though I don't enjoy it.

If they happened more often I would have to try and force the issue - luckily I've only had 2 bouts (for around 3 weeks each) this year so far but they were bad enough!

Is there a direct relationship between the management or non-management of your symptoms and your DCs psychological wellbeing?

You experiencing severe symptoms = Your children being very upset and distressed, worried.

Your symptoms being better managed = Your children not impacted that much, more relaxed and carefree.

Fox, I really feel for you. It sounds terrible.

Not sure what you mean, Sadie? Of course if I'm feeling better, I'm doing more normal stuff for the DCs and of course they then pick this up and feel happier. If I'm in a lot of pain and therefore doing less, they respond by being morose/withdrawn/quieter or would rather me not be directly around them, as they don't want to be reminded of me still being ill. So I try to put on an act a lot of the time and disappear off to another room if I can't act normally.

They would of course be much much happier if I were completely better.

I've had an email for the consultant's PA tonight who's managed to squeeze me into the very end of his next private clinic on Wednesday next week, quite late at night 9.15pm (which will mean leaving the DCs for a while, as it's at a hospital about one hour's drive away and even in his private clinic's he runs about half and hour late). I've said yes to this as she told me he didn't have an NHS appointment available till mid July now.

So he'll be tired and probably wanting to get home, as it'll be the end of a v long day for him - the consultant I mean. So I need to think how to manage him best so that I can still ask all my questions and get some guidance, although we won't have the biopsy results by then - without him getting cross and impatient.

Anyone have any tips for managing tired, overworked and irritable consultant's late at night?

I tried to test myself out physically today and have probably overdone it as I have more upper gastric pain and the cough/chest pain thing now. But I was able to do more than I could about 5 weeks ago. Still nothing like normal however. Have so far been OK eating cooked carrots, a bit of cooked kale and a few blueberries. At least I haven't noticed me getting much worse. I'm still losing weight very slowly and I don't really want to lose anymore but as I'm not eating any fats, milk products, gluten based products or anything sweet at all, it's hard to keep the weight on.

Glad you got an appointment finally. My point is that if you are in pain, you can see your children suffer because of that.
If you could relieve your pain (eg. two Panadol)...your children wouldn't have to be "morose/withdrawn/quieter or would rather me not be directly around them, as they don't want to be reminded of me still being ill". You are more willing to have the pain that affects everyone, than you are willing to take some action to see if there is something you can do about the pain symptoms to improve your and DCs quality of life in the interim. Now maybe of course its not that simple it just seems that simple from the outside.

Sadie, why do you think I'm not willing to take action to stop the pain? I'm still not sure what you're getting at? I'd do anything to stop the pain of course, which is why I've persistently emailed the consultant's PA over the last week or so asking to see him so I can discuss with him options for pain relief and symptom management.

As I've explained here, I was told by him and the GP to take nothing at all until I had a diagnosis and my use of Ibuprofen, right at the start of having flu 12 weeks ago, may well have caused or been a big contributor of the digestive issues I've now got. So I've not been able to consider that as pain relief.

Paracetomol is another option but I need to know, medically, whether there are any contraindications to this - as I don't even know what the cause of my illness is, so if it's in any way, say connected to the liver, the paracetemol might be contraindicated. Equally, I don't know if paracetomol (sorry I don't know what Panadol is, that you're referring to), would touch the kind of abdominal pain I'm having or whether there's something more specific and appropriate.

But the bottom line is that I haven't wanted to go against anything I've been advised, medically, until I hear to the contrary. Hence my increasing frustration with not being able to get another medical appointment (till recently) to discuss pain relief further.

I'm still in the dark about why you would think I'm more willing to have pain that adversely affects my DCs than to do anything about it? You can see from my posts that I've tried again and again to do something about it by contacting my consultant, as I'm fully aware of the affect me being ill and in pain is having on my DCs and my top priority is to reduce their distress. Maybe something about my situation is triggering off your own stuff and how you've coped and you're inadvertently projecting this onto me, as I know you've been through a lot too?

Sorry for causing frustration, don't mean to make your situation worse or seem unsympathetic. From my own experience, from the outset of my stomach problems my GP said paracetamol was absolutely fine throughout. Before, during and after any tests I had. They never said don't take paracetamol. Ibruprofen and aspirin I get not taking those because they are entirely different drugs. I hope you get some forward-moving answers next week I have everything crossed for you.
My 'own stuff' also includes I guess studying health psychology and all forms of support for people including social, emotional, and medical and how people get access to those things. Your example is why we need more health psychology services to act as go-betweens patients and medics so people have somewhere to go to ask all their questions - when will my test results be, what will they mean for me, what kind of tests and medications are involved, and how might this affect my life and I'm frightened. Because consultants can't actually do that job for people, it's just not their area of expertise. And because we are an internet forum I am jumping to conclusions about people's situations too.

similar symptoms- less severe- got much worse in Feb, GP referral, gastro consultant, colonoscopy over a month ago which was apparently clear- today have letter from cons saying they've found from biopsies that there's some inflammation after all, and I could maybe try such and such a drug, come in again in July...after a quick search find it's for colitis/crohns

feels like this has taken an age and my symptoms are a walk in the park (a quick walk, in a park WITH A TOILET please) compared with yours

it looks like it's the same timeframe to get diagnosis/treatment, however severe the symptoms

you have my sympathy

Thanks for explaining, Sadie and yes it would be good if my consultant had the time and ability to discuss the impact of my illness more holistically. Hope he's helpful when I see him on Wednesday night.

Muddha, sorry to hear about your experience too. Why is it deemed OK just to send you a letter with the suggestion of a drug you can try, without seeing you and discussing all the implications this possible diagnosis and treatment may have on you and your life and the reassuring you and giving you a specific, tailored plan of action? Would the consultant themselves like to find out this way that they had a chronic debilitating disease?

I sometimes wonder why medics aren't better trained to consider the person/the patient/the impact of their illness. We're not just machines. i know medical training has improved in this way but I hear so so many examples of what I'd call 'bad practice' still and a good starting point for any HPC surely is to ask themselves, "If this were me, how would I like to be treated and what would I need to hear at this point?"

I hope things improve for you soon, Muddha.

Paris, thanks for your input. Yes, I will be paying for my next consultation, so I hope he's able to control his tiredness and irritation and be helpful to me. In the last few days, I've felt a bit better again but I know now that this comes and goes and it's unpredictable how I'll be. I'm now managing to eat some veg. and there's no discernible deterioration in my symptoms so far.

I want to feel more optimistic but I've learned, over the last 12+ weeks, that almost every time I've thought I was properly getting better, I've suddenly then had worse symptoms again. So I'm just trying to use the time I have to catch up on things, various domestic tasks at home and do a bit more work.

DCs I think want/need to pretend to themselves that mum's OK now and not refer to the illness at all. So they're less withdrawn but their expectations of me have increased.

Spin: I've just read this whole thread and am now wondering if you would consider going to see a Naturapath, Herbalist or the like.
I used to have treatment by a Herbalist who used kinesiology, which I know is considered to be ridiculous woo, but it worked for me.

I've recently seen a Naturapath who used the finger allergy testing machine, which can also detect vitamin and mineral deficiencies, (more woo).

Would you consider reiki healing?

Pax, thanks for the idea but it really isn't for me. I'm a very evidence-based/scientific/logical sort of person and whilst I'm sure complementary medicines work very well because of the placebo effect and a good connection with the therapist, I'd rather find the answers in modern medicine, even though these are not very forthcoming! I had a boyfriend, many many decades ago now, who was a complementary therapist and he was so 'woo' and believed in all sorts of stuff, 'experimented' on me as he was training and had a large following of ladies who thought him some kind of guru. It put me off for life!

I'm really ill again today, which is always v hard after a while feeling better, even though i try not to get my hopes up. Got a lot of upper gastric pain that goes right round to my back and chest. It may be related to the fact that I've caught the DCs virus - extremely sore throat/runny nose/cough and am looking after one sick DC off school, whilst also working today and feeling thoroughly exhausted.

It may also be connected to the fact that I had one - just one - cough sweet today - a fruit flavoured Locket - which i assumed would be harmless enough - but possibly an ingredient has inflamed my guts. At the start of my illness, when I had flu, I was having a lot of these cough sweets, to get me through a work day and maybe something about them and the use of Ibuprofen has tipped me over the edge.

Anyway, I'm v v apprehensive to taking anything at all except drinking water now and still haven't dared try paracetomol. However, I'm seeing the consultant tomorrow night - no idea how I'll keep awake enough to drive the long journey there and back and manage the appointment given how ill I'm feeling but really keen to see him.

en.m.wikipedia.org/wiki/Plant_sources_of_anti-cancer_agents

I appreciate what you are saying about scientific evidence . I do hope modern medicine does have answers for you and that you will be back to good health soon, but it may be something to consider if modern medicine fails you.

As others have stated, IBS is a blanket term for digestive problems, many of which are unexplained.

The Wikipedia link above is interesting. Modern medicine using plants to treat cancer, but obviously it's not called herbalism.

I hope you are better very soon.

Thanks Pax. Off to see the consultant tonight and hoping he doesn't throw me out after just 10 minutes, as I know I'm his last patient in a very long day. I've typed out a list of questions, with a copy for him and hope this means I'll get some answers - but he may refuse to suggest anything I can take or to speculate, as the biopsy results are still not back.

Had a rotten day of gnawing, acidic upper gastric pain - plus nasty sore throat and productive cough now - and feel lousy. Need to get psyched up for an hour's drive and then a 15 min appointment (if I'm lucky) which will cost around £180 and then another hour's drive back home where DCs may already be asleep.

Keep repeating that poem, Invictus, to myself - the one that ends "I am the captain of my Fate, I am the master of my soul" - to stay strong and stoical - but it's bloody hard after 13 weeks of pain!

Why do you assume the doctor will have no time for you, might throw you out after 10 minutes, may not suggest anything op?
All these things may or may not happen - I really hope not - but why assume the very worst. It does seem a very negative mind set.
Hope you find it more helpful than you expect.

Waiting with baited breath ...