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]

I saw the NHS GP (a locum who I've never met) yesterday. He spent about 4 minutes with me, didn't examine me, barely looked at me and as soon as he heard that I'd seen a private GP and already had a private GI Consultant appointment later this week, he basically said they'd do nothing in the NHS until after that. If I couldn't afford to follow through privately (which I said was probably the case), I'd have to start right back at the beginning in the NHS with blood test, stool sample and then a possible referral on. All that could take weeks and weeks.

So I think I will have to just pay privately - which is possible from savings but not easy. I could barely sit up straight at the GPs and felt I'd faint any minute.

The only positive thing was that when I asked the NHS GP if this could all just be a virus lasting 2 months now and making my digestive system 'pack in' - he said yes. So I'm now holding onto the hope that it's a virus thing, although I've never had any kind of virus that leads to the abdominal pain/nausea/diarrhoea/dizziness/inability to eat that lasts anything like as long as this.

I do feel very flu-like now too, like when you can barely crawl around and if you make any effort, you get a thundering headache, feel more sick and could easily just lie still in a heap on the kitchen floor, not feeling able to get up - that kind of feeling.

[NanaNina]

Spinstar it sound like you saw a very crap GP and a very incompetent one. It reminds me of GPs I had years ago but I can't imagine any of the GPs at my practice treating some like that. Of course he was miffed when you mentioned you'd gone privately, and I suppose he'd got a good excuse then not to bother any more.

I do worry about you spending your savings on private health care, though I can understand why you are taking this route. To be honest I think it might be best to book a double appointment with a good GP (ask around at the surgery - it's amazing how much people will recommend a GP or tell you to avoid one) because the NHS should be able to diagnose and treat you. Private doctors aren't any better qualified - you just get a quicker service, although these days a lot of people have private health insurance from their employers and so it isn't as quick as it used to be getting appointments. I think you could end up spending an awful lot of money.

GPs should refer you on to the relevant specialists if they are unable to diagnose, and you can ask for them to do this. I know it's difficult when you are feeling so crap, to be assertive. Can you take someone with you for moral support. There are good NHS GPs out there - you just came across a crap one.

I don't think it was positive that the GP said it could be a virus - it might be - but my GP (when I had something similar) said "we can't just assume it's a virus" and it turned out to be campylobacter. I think lazy/bad GPs just fob people off with the "virus" diagnosis.

[moggiek]

How are you, Spinstar?

[Spinstar]

Moggie, thanks for asking and also thanks nickers for the good advice. Well I had a much better appointment last night with a private GI consultant who was really nice to me and listened to everything I said.

There was good and bad feedback really: on the one hand, because I'm slightly better than I was and by drastically restricting what I eat, I'm no longer getting diarrhoea, he says that's a favourable sign. It would be more likely that I'd carry on having diarrhoea with blood too and less pain, if it were something worse.

On the other hand, he was worried that the initial diarrhoea had been waking me from deep sleep in the middle of the night and gone on for 10 days - which he said was a bad sign.

He discussed lots of possibilities from bowel cancer to various colon related issues including even a just a virus. He said he'd now write to my NHS GP and ask for a very specific blood test for coeliac's disease and another specific stool sample that I think will flag up any inflammation in my colon. If those two further tests do indicate this, then he'll recommend I have a CT scan and a colonoscopy in the NHS. So I'm pleased that it looks like I'm going to have his backing to get seen in the NHS, although I expect there'll be months or waiting.

He also told me to start reintroducing foods to see what, if anything, I'm now possibly intolerant to, like lactose and gluten. He said I might then get much worse symptoms but at least I'd have an idea of what not to eat. I'm slightly worried about doing this as I really need to be OK for work and the viral symptoms are definitely less than they were - although still very much there, as if I've just begun to recover from the worst ever flu.

Can anyone suggest a first new food to try that might increase my vitamins/minerals intake but that isn't lactose or gluten just yet? I'm currently eating plain chicken, plain cod, basmati rice, mashed banana, mashed potato, rice cakes, bio yoghurt and have also occasionally had bread or toast with honey - and I'm not sure if the gluten in the white bread is maintaining the abdominal pain or what but I've not had much.

I used to eat around 12 different types of veg/pulse/bean a day and about 2 to 3 fruits a day and drink tea with milk and eat absolutely tons of cheese. Does anyone know which vegetable is the least likely to have too much roughage or provoke wind?

The consultant also told me that a wholefood, largely vegetarian diet can actually cause tummy problems because of too much roughage, which I hadn't realised. I've been eating that way for over 30 years!

[f1fan2001]

I was told to I could eat carrots on my diet sheet to avoid fibre and wind and that was about it

No peas, broccoli, cauliflower, sweetcorn, pulses

Have a look at the various colon illness websites - they are really good for listing the foods that you can and shouldn't eat to avoid fibre and wind

The diet you list is very similar to what is recommended after a virus or operation. If you are lactose intolerant it is common to be able to eat a limited amount of dairy before you experience symptoms - also detailed on the websites.

Hope you can get your symptoms down to a manageable level whilst you wait to be diagnosed x

[SirVixofVixHall]

Be aware that unless you are eating gluten regularly, the coeliac test will come back with a negative, even though you may be coeliac. So you need to eat enough to be tested (at least one slice of bread every day). You will be having some lactose in the yoghurt, although I think that live yoghurt is pretty low in lactose. Re veg/fruit- Can you cope with simple green leaves, like spinach or lettuce? Apple is high in pectin which sooths an upset gut, so stewed apple is a good thing to try, you can buy it in little jars in the baby food section, if you are feeling too grotty to cook. Honestly I would stick to white bread, white rice, etc at the moment . I saw a very-well-thought-of nutritionist a few years ago, and she also mentioned that some people with sensitive guts do better on more refined versions of carbs for the reason your man gave, that too much fibre can be irritating for some people. The least fibrous veg would be things like simple salad greens, and avocado. Avoid pulses (and root veg) for now. Having a few less vegetables for a little while really won't matter. Cooking and pureeing vegetables can make them easier to digest, so when you do try things do that first. Or make a soup and then blend it. Simple soups with fish or chicken would be good, using veg like watercress, lettuce, nettles, possibly pumpkins.

[wfrances]

im having my colonoscopy on wednesday for similar symptoms,
ive seen a consultant and had a flexi sig already done.
flexi sig was normal ,all bloods normal except one ,which is showing i have way to much protein in my blood.
ive lost 3 stone but the consultant doesnt think its cancer but something called patchy colitis .
if the scope is normal ,i have to have a ct scan.
everything in the nhs takes so long ,and im classed as urgent!
but because im 39 and not anaemic apparently it cant be cancer!!
so im not cancer urgent ,which if you are ,you are supposed to be seen and scoped within 6 weeks.

[RubySparks]

Are you getting other blood tests e.g, full blood count, iron, B12? Sounds like you could be b12 deficient if you are a long time vegetarian.

[Spinstar]

Well I felt a bit better for about 4 days and then today, I feel terrible again - with deep, hot pain in my lower left hand abdomen and upper left abdomen, nausea/loss of appetite, chest pain and painful cough and feeling ice cold, although it's very warm where I am today.

I had 2 hours sleep last night and then suddenly woke with all those symptoms and a racing heartbeat and feeling hot. I have no idea if that's just hormones and totally unrelated to the abdominal stuff. I just wish I had some answers.

I'm waiting for the consultant to write to my NHS GP and then I can have further blood tests (I think this is for a specific marker for gut inflammation, Ruby) and stool sample test again. But the waiting is awful and so is feeling this ill for so long - over 6 weeks now.

Could this recent worsening symptoms be caused by the fact that yesterday I had baked salmon instead of plain baked cod - and I also had 3 cheese and onion mini bite things from Tescos - because yesterday i was hungry, feeling better and thought why not? Also, the consultant had told me to try re-introducing other foods.

But maybe it's nothing to do with what I ate. Maybe it's just the underlying condition getting worse again? I really really wish I could speak at length to a doctor about all my theories and concerns but no one will want to see me again until after the next set of tests and I can't have those until the consultant letter arrives. That may not be till next week now and as I'm back at work part-time, I'm going to have to fit appointments around work. I wasn't working today and couldn't have done anyway, as I feel so ill but have a very busy day tomorrow and MUST be well for then.

DCs keep talking avidly about our summer holiday and I have no idea whether we'll get away at all now but can't let them know this.

Wfrances, how did your colonoscopy go? Does it hurt? Did they tell you straightaway what they saw/didn't see? I expect it'll be weeks and weeks before I get an appointment. Feeling despair right now.

[SirVixofVixHall]

Oh spinstar I really feel for you, this sounds so stressful. Feeling ill for weeks is really hard to deal with.

[Spinstar]

Thanks SirVix.

Confused, nothing further is being done until the consultant sends a letter to my NHS GP requesting more blood tests and another stool sample. Then I'll have to book an appointment for that - which may be up to 2 weeks, after the GP gets the letter, that the surgery can fit me in for a blood test. Then there'll be yet another wait for results - around 10 days to 2 weeks I think.

After that and dependent on the results, I would then be referred for a scan and colonoscopy. I can imagine that might therefore be months away, even for 'emergency cases'. If that's the case, I'd then go privately but I can't even do that until after the letter to the GP and the next set of bloods and stool sample.

This is why I'm in despair really. I'm completely unused to being ill at all. I've been very lucky really all my life to be so healthy. I'm completely unused to how slowly things move in the medical world, even privately and how everything is in the hands of someone else and not myself.

My DCs are finding it hard to cope with me being ill and having days when I'm feeling really really rough. They've never had a sick mum and are cross and resentful - which hides their worry and upset. I keep apologising to them for being the way I am and it's taking it's toll on me emotionally now too but I'm only human and can't be calm and measured and tolerant of the pain and fear all the time.

It feels too awful at times to be really happening. Only a few months ago, I was dashing around happily in life, managing everything and feeling great. Suddenly, I'm weak and exhausted and terrified.

I'll try to find out today what's happening about that awaited letter from the consultant. I'm sure it won't feel very long for him, as he only saw me on Friday but for me it feels a lifetime ago now and I'm desperate to 'keep the ball rolling',

[catsdogsandbabies]

Continue privately? At least a ct or ultrasound would exclude some scary stuff. Ask private consultant to send you for scan? Go from there?

[diddlediddledumpling]

I have had some similar symptoms to yours over the last 18 months, and at the height of it I just felt horrendous.
Two things that have eased but not completely removed my symptoms: removing dairy and stopping worrying. The negative test results, including an abdominal scan, helped with the latter. like you, I have never been prone to health anxiety, but that's because I never got ill! Once I started feeling unusual symptoms, and Dr was testing for pancreatic and ovarian blood markers, my anxiety kicked off big time.
I ventually noticed that it seemed worse a couple of hours after having milk, and when I cut out yogurts, milk, sour cream, chocolate etc, the symptoms gradually diminished. I had been drinking milk and eating yogurts to settle my stomach, which it did for half an hour and then this gnawing sensation would return.
I also found when I was at work, my symptoms weren't as bad, and I thought this might be because the anxiety was diminished because I was busy.
my mum suffered something similar in her forties, and my granda , so I think there's probably a genetic component (which there would be to lactose intolerance. )

[Spinstar]

At this point, I'd spend all my savings to go privately but I'm having to wait for the 'process' involved where the private GI consultant writes to the GP who then refers me for tests. Until that letter from the consultant is written, nothing further can be done either in the NHS or privately.

Diddle, you sound just like me! I'm not having any milk or milk products now at all except probiotic yoghurt, which I thought contained little lactose but good 'bacteria'. I'm scared to try the probiotic powders from the chemists as there are some contraindications dependent on what type of stomach issue you have (according to what I've researched on the internet. I used to have cheese as my main protein every day and milk in tea but don't eat any cheese now nor drink tea of coffee - only water.

The NHS GP appointment I had some days ago was useless - he spent 3 minutes with me and didn't even look at me or examine me or listen, once he heard I was about to see a private consultant. The day I saw the private consultant, I was feeling slightly better and so he may have got a better picture of things and I always comes across as perky and articulate in these situations, partly because I know so so many women who are 'labelled' as neurotic or given the diagnosis IBS by male consultants.

If I got to my GP in tears, he'll simply say I'm now anxious or depressed - which I'm not - only naturally concerned, as anyone would be - about a total change in my health and bowel habits.

Today, when the initial 'such' on the phone lines at the GP dies down, I'm going to call them and ask if they've yet received the letter from the consultant. I hate calling them as the receptionists are always very rushed and busy and therefore a bit 'off' with you on the phone. If the letter hasn't arrived, I'll try to track down the private consultant's secretary and see what's happening and maybe then flag up that I'd be happy to go private if I can be seen quickly for a scan and/or colonoscopy.

On the day of the consultant appointment, the consultant was reassuring as the original blood tests hadn't found any sign of internal bleeding and I was reporting that I was getting better. But I'm dipping down again and just want some answers.

[MarthaCostello]

Another here with bowel problems. I had bowel cancer a couple of years ago, I was very impressed with the speed of all the tests and diagnosis, so I'm sorry that hasn't been the same for you. I wasn't in a high risk group and no one suspected bowel cancer as I was 21, but I turned out to have a genetic condition (FAP) which had caused the bowel cancer. I'm not suggesting this as a likely cause of your symptoms as it would've shown up a lot earlier than 51, just giving some background to my following advice :)

I've found the best vegetables are carrot, potato and sweet potato, peeled and cooked until very soft. Mashed potato is really good if feeling grim as can just slurp it. My dietitian also recommended custard, if you like it, it's a good way to get some calories in and really easy to eat :) on the food front, you just have to try and force yourself to eat something even when you don't feel like it. I'm not saying that to be cruel and I know how difficult it is, but you need keep your energy up, especially if you end up needing any medical treatment, and also it's good for your bowel to have something going through it. I'm a lifelong vegetarian so I found the low fibre diet rather tricky, but soon got used to it. Being pescatarian gives you a few more options though :) also make sure you are eating gluten even if you think it makes you feel worse, because otherwise you could get a false negative on the coeliac blood test.

If you're really struggling with food, you could try Complan/Ensure type drinks/soups. They sell them in pharmacies. They're just high calorie shake type things. I was given them for a week or so before my surgery to help prepare me for not eating for a while. I didn't like them so I didn't drink them but lots of people seem to tolerate them or even like them. There is a Complan powder that you can mix in with your own food or drink as well, which might be nicer.

Coeliac disease can develop at any time, and it's not really related to lifestyle factors, so your age and previous diet etc. wouldn't make it less likely. I'm awaiting coeliac test results myself at the mo, in some ways I'd be quite pleased if I had it as at least it would mean there was something I could do to improve my symptoms.

You've mentioned dizziness and dehydration, and that you're drinking lots of water. If you're not eating much and having bowel issues, you may still be dehydrated despite drinking lots, and the water might be making it worse. Could you try drinking squash instead and see if that helps? Also make sure you're getting some salt. I now only drink squash, on advice of my doctors, as my symptoms leave me permanently dehydrated and drinking plain water was making it worse. Originally they said I had to drink Dioralyte, but GP suggested squash instead as Dioralyte isn't particularly nice - it might be worth having some to begin with though, to help with dehydration, and having some if you have diarrhoea agin. I also make sure to keep my salt intake up.

I know you say you're not anxious, but your posts do come across as quite anxious. I have no experience of anxiety myself, but a lot of friends have had it, especially while waiting for test results. I sometimes post on the cancer support thread here and everyone says that the waiting for results is the worst bit, and that having a diagnosis and a treatment is easier to cope with, even if it turns out to be cancer. (I'm not suggesting you're likely to have cancer, but that the same would apply to other conditions too.) It's understandable to worry about a sudden change in your health, but I'd advise to try and take it one step at a time. There's no need to start thinking about what you will do in the summer holidays or anything like that yet. You could well be perfectly fine by then. For now try to focus on increasing your energy intake and making sure you're hydrated etc., as that's all you can do until you have your next test results.

I wonder if your internet research might be adding to your worries - on the cancer thread, one of the first pieces of advice anyone gets when they are having tests is not to Google. If you really cannot resist, make sure you stick to legitimate websites. The internet is full of out of date or incorrect information and people with bizarre or dangerous theories. Also people tend to only post about medical issues when they're having problems, which can give the impression that everyone with whatever condition is really ill and miserable, just because no one really posts "I had X and now I'm fine and getting on with my life" :)

I hope you get some answers soon and start to feel better

[MarthaCostello]

Goodness, that was really long

I should've said, it needs to be sugary squash, not the no added sugar stuff.

[SkaterRobot]

Hi spinstar, I'm really sorry that you're going through such a hard time. I came on to post because, reading your posts, I'm really shocked how long it's taking for the doctors to actually do anything about this.

I too have had stomach issues but they weren't as bad as yours, I was still able to go to work and function fairly normally. First of all my gp took numerous blood tests. When these came back clear they referred me to a colerectal consultant straight away but I decided to go private because of the nhs waiting time. I saw a private consultant within a few days. He arranged both a colonoscopy and endoscopy for the following week. Meanwhile my gp surgery carried out a stool sample. I can't understand why they haven't arranged for a colonoscopy/endoscopy for you straight away. These procedures will rule out something sinister ie bowel cancer and biopsies can be taken and tested for celiac disease amongst other things. (The blood test for celiac disease isn't very reliable but the biopsy tests will give you a definite answer. As pps have said you must be eating gluten before the test).

I know it's hard because you're feeling so fragile but I'd really try to push for these procedures. I can't see why the private consultant won't do it for you. Make sure you don't downplay your symptoms, be honest about how it's completely affected your life. I don't know if you're like me but I tend to downplay things because I don't want to seem a bother but you really have to tell/show them how poorly you're feeling.

Good luck.

[Spinstar]

Thanks for your very helpful post, Martha. Yes, I am getting increasingly anxious having never been like this before. I've tried to find proper medical sites on the internet because I like to know scientifically what might be happening to my body.

I don't fully trust doctors as I've known several in my time both within the family and among friends /other networks and like all of us, no one is infallible and medicine is never an exact science. So I like to be able to query things and assess things myself and I'm desperate to acquire a lot more knowledge now about my digestive system.

I'm not really feeling dizzy anymore nor having headaches by the way.

I've avoided squash because of potential acidic content and the sugars maybe making something worse. I'm also not sure if things like Complan have lactose in them, which I'm avoiding? I bought dioralyte at the start but again didn't use it in case it skewed blood test results.

My first blood test results showed high sodium although the GP thought that was due to the sample degrading when it was couriered by motorbike to a city 70 miles away. But since then, I've stopped using much salt although I've had marmite on bread from time to time.

I've now called my GP and there's no letter there yet from the consultant. I've also left a telephone message with the consultant's private secretary, asking about the letter and also flagging up that my symptoms have worsened and I'd now be happy to do everything privately, including the blood tests and stool sample, if I can get those done quicly - but heard nothing back yet.

I'm partly distracted by working today but feel very nauseous and like I may have diarrhoea again and have a lot of abdominal pain and am still icy cold all the time.

Confused, the GP receptionist was adamant that I shouldn't even think of making an appointment, even just to ensure I had one in the diary, until they get the consultant letter. So no chance of an appointment there in the near future, sadly.

[gonetrekking]

I've just read the whole thread and really feel for you OP. My sister was admitted to hospital with Ulcerative Colitis a year or so ago, she wasn't ill for as long as you but was going to the loo at least 12 times a day and same again at night. It sounds as though you are really poorly but not poorly enough to be admitted unfortunately (if that makes sense).

You do sound very anxious understandably but I would really try and not worry about the DC's and especially not what may or may not happen in the summer holidays. You say they are young teenagers? Aren't they completely wrapped up in Ipads and the like?! I would try not to concern yourself about them at the moment, they will cope for a while with not doing a lot.

Really hope that you get some answers soon.

[MarvellousMarbles]

Coeliac disease just switches on, and this can happen at any time to anyone with a genetic predisposition to it (which is about a third of the population).
A lot of things can trigger this switch-on - it can be a virus (like rotavirus), a hormonal change (pregnancy/menopause etc.), a physical trauma (e.g. car accident) or illness. No-one knows why, yet.

For a coeliac test to work (i.e. not to get a false negative) you have to be eating significant amounts of gluten (bread, pasta, cake etc.) in at least two of your daily meals for the six weeks before the test.

The most common age for coeliac diagnosis at the moment is the 40-60 age group.

A coeliac diagnosis would be good news, because it is completely controllable with diet.

I hope you get a resolution soon OP, whatever is causing this, it sounds horrible for you.