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"

[SkaterRobot]

Oh spin that's just awful. Some private clinics need a gp's referral for a colonoscopy, but some don't. I had a referral from my gp but I didn't need it, the clinic I used allowed self referral. I paid around £200 for an initial consultation and that was it, colonoscopy and endoscopy done within a week and about £2500 for both. I think you should ring around some other consultants in your area and ask how long you'd have to wait for the procedure. Find the phone number of their secretarys and enquire that way if you can rather than going through to a hospital switchboard. Of course if you go with someone else you will have to pay again for the initial consultation but if they could carry out the procedure within a week I think it'd be worth it!

Does the gp know you've lost weight? This is one of the warning signs as well as diarrhoea and bleeding from the bottom and they should be rushing your referral based on that.

I don't mean for that to worry you btw, I lost lots of weight too.

[sadie9]

Hi Spinstar,
You don't have diarrhoea right now, isn't that right?
You have an appetite and are eating normally. You said you are not losing weight. You are well enough to attend work.
Your mind will tend to link all symptoms together and come up with something drastic. The sets of symptoms may not be linked at all.
The breathlessness and pain in back could be from gastritis or something simple like that. Gastritis also caused feeling of fullness in stomach.
The night sweats and waking up could be just plain hormones.
Have you tried Panteprazole or another over the counter PPI for stomach acid reduction? Try that for a week. Or even Gaviscon 3 times a day for a week and see if that helps the stomach pain.
Have you tried taking Paracetamol when you don't feel well? Does it help?
Are you someone who doesn't like taking tablets?

[SkaterRobot]

I'm sure she said she's lost a lot of weight sadie, something about her bones showing through where she'd previously been plump and looking gaunt. I know what you mean though about linking symptoms and coming up with something frightening.

[Spinstar]

Sadie, I'm not at all eating normally and haven' been able to do so noe for getting on 7 weeks. I've lost about 8 pounds in weight. I'm only working because I'm self-employed and have no insurance for sickness and we're solely reliant on my income for all of us. So I have no choice - although I'm not doing nearly as many hours as I usually do.

Today, I felt much worse again - but with increasingly chest/back pain, dry persistent cough, feeling ice cold and shivery and racing heartbeat - plus breathless even when sedentary. I managed to get a same day appointment with my own GP who I've not seen for well over 10 yrs and have known for 25 years now.

Sadly, he hasn't changed at all and was his usual obnoxious self, ensuring he let me know several times that he'd squeezed me into his clinic at the end- which I told him I really appreciated.

He referred to the letter from my consultant and said he'd referred me back to the same person in the NHS as planned. However, he said it wasn't his role to refer me for a colonoscopy or CT scan in the NHS and it'd be up to the consultant - who I probably can't get to see for weeks now as it's an NHS referral. So I'm at least clear now that I'll have to pay privately if I'm to get these done quickly.

I've meanwhile heard nothing at all yet from the private consultant's secretary.

Anyway, he examined my chest and heart and blood pressure. He said my BP was normal and he couldn't hear anything of note in my chest - which is good - but then he said I had palpitations - which I've actually had for years and thought were perfectly normal - and he's told me to have a 20 minute ECG with the nurse at the surgery and phone the hospital for a chest X ray.

He said these were routinely what one would do with my symptoms. On the one hand, I'm reassured that he found no sign of chest issues or BP issues. On the other hand, when I said to him, I feel more ill than I've ever felt before and it's getting on for 7 weeks now and so I think you're saying, you can't say why I feel so ill nor suggest what to do in the meantime - and he tersely agreed.

I feel immediately categorised as a 'difficult patient', even though I've barely been to the GP for years and years and rarely if ever used any NHS or medical time up in 51 years! However, I sort of knew he'd be like this and at least I can have tests for the more flu-like chesty symptoms. I'm still scared that I'm so ill when no one can yet give me any reason why I feel this way.

Sadie, no doctor has yet suggested any medication and I'm reluctant to take even paracetomol in case my stomach reacts or something, I had a whole list of questions about what I might take for my stomach , would I take painkillers, should I try probiotics - but the GP didn't have time to let me ask anything further and i do know he may have had far far more urgent cases than me and probably a very long, hard day (and he's fairly elderly now himself).

So that's today - feeling worse and no further answers.

[TenerifeSea]

Please don't "turn up at A&E", they won't do anything unless you are presenting with urgent symptoms that are new. Honestly, it won't speed up anything, just stress you out.

Anyway OP, firstly take deep breaths and remain calm. Feeling worried can have such a crazy effect on the body and really exacerbate any existing health problems. I appreciate it is very scary being ill very suddenly but it's not even been 4 weeks since you sought medical attention. Obviously you need to receive scans/tests speedily but I don't think your referral and treatment pathway has been anything other than normal nor any cause for concern.

I'm not a medical professional but I have UC and have many family members with UC and Crohn's. Blood is stool is a key sign of IBD, although not mandatory, so not bleeding is a good sign. You're quite young for bowel cancer, especially if there's no family history. I believe that blood in the stools is also very common with bowel cancer.

I hope you get answers soon. Take it easy.

[IPlayBass]

I know that the gp can't actually refer you for the colonoscopy but he does have the authority to rush you through to the consultant. I'm in Wales so don't know if it's different here, but here if you have 2 out of 3 of the 'warning signs' - weight loss, blood in poo and diarrhoea then they can make your case a priority. If you're able to see another gp please make them aware of the fact you have significant weight loss and diarrhoea.

I'd reiterate what others have said about trying not to panic (I know it's easier said than done!). I speak from experience - I thought I knew my body and that I'd know if stress was causing my symptoms but honestly, I've learnt how stress and worry can take its toll on the body physically and it's unbelievable, never would've thought it before. Worrying about my symptoms caused meoto become more and more ill and it wasn't until I'd had every test going and realised that it was 'just' a case of irritated and inflamed bowel that I was able to calm down and manage my symptoms. Don't get me wrong, I still have days when I feel like shit but because I know it's nothing sinister it doesn't turn into a worry fest and it's easier to stop myself becoming more worked up and more ill. I know when I get the bowel issues and the pain to take a step back and chill out. However, I'm not saying that's what's wrong with you, obviously I haven't a clue. It could be a food allergy/gall bladder/appendix.. any number of things. I just really hope you get this sorted out asap for peace of mind. Uncertainty about your future, especially when you have dc, is terrifying, I know.

[Flowers]

[IPlayBass]

Sorry I mean

[IPlayBass]

Also, I don't know if this will mean anything to you but personally I have been through really stressful times in my life and managed to get through them without any physical symptoms. When I look back on those times I've been able to vent my frustration, tall about my worries etc. Howevet the stress was brought all these bowel probs on for me was stuff that had to be bottled up, it had to internalised and it just built up and built up until something snapped (my health). I've read a bit about ibs and others have often said the same, not sure if that will be relevant to you but just a thought.

[IPlayBass]

Sorry for my appalling typos! I hope that makes sense.

[PeaceOfWildThings]

Op, check online and with a phone call to see if you can self refer to get the colonoscopy or any other specialist tests/checks/advice. Im amazed at what one can self refer for around here!

In terms of diet, Ive had some similar symptoms to your earlier ones and cut out dairy and have seen a vast improvement. Discovered that molasses (Billington's unrefined raw cane sugar, available in Sainsbury's) or blackstrap molasses (eg by Meridian, available through Amazon). Molasses is high in calcium and iron, and other assorted minerals.

When I developed these symptoms I looked up what could be going on and came across something about a cough...so going to recheck to try to find out what that set of symptoms related to and will get back to you. (think it was gallstones rekated).

[PeaceOfWildThings]

Um...well I looked it up and remembered what it was I had read...A type of intestinal worms, like roundworm. Some of them can affect the lungs too and cause a dry cough. The pattern of your symptoms would be fairly typical. Not a diagnosis, but worth a check (sorry if this has already been totally ruled out.) Obviously, not something to leave untreated, and it can be treated.

[TenerifeSea]

Confused she's been referred to a specialist, not fobbed off! I am not saying OP should not push for the referral to hurry up, just that A&E won't do anything, so it would be a stressful waste of time for an ill person.

Yes, you can ask your GP to put 'urgent' on the referal. Gastroenterology will then assess the referral directly and can give an urgent appt if needed. When you have colonoscopy, they are able to tell you on the day if they see anything but obviously, biopsies take a while to come back.

[sadie9]

There is no blood in the stools from what I read. If it is a simple viral thing then I figured a couple of panadol might help you get through the day like anyone would take for a flu type thing. Paracetamol is gentle on the stomach because even tiny infants of 3 months take it and it doesn't upset their stomachs.

[Spinstar]

Confused, thanks for your support!

Tenerife, thanks also. It's just that I've never been a patient before really, except when I had DCs and I'm not used to the delays and waiting around, However, I've managed to arrange both the ECG and the chest X ray for this week in the NHS - so at least that's something. I hate the way they don't actually tell the patient the results but only tell your GP - so yet another appointment coming up. I've never visited my GP this many times in the last 25 years as I have in the last few weeks!

The private GI consultant emailed me to say they definitely can't fit me in within the next 2 weeks and she's going to ask the consultant whether the colonoscopy and CT scan referral (which hasn't actually happened yet) is dependent on the outcome of my recent blood tests and stool sample - or not.

IPlaybass, I'm sure stress can play a part in all of this. I've never 'reacted' like this to anything at all however and there's no current difference in normal life stresses than there's ever been. So I really don't know why my body seems to be 'breaking down'.

I'm only 'panicking' when the symptoms get worse. They fluctuate. At the moment, I feel like I have the worst case of flu ever but without a very productive cough - more all the chest pain/back pain, dry cough, breathlessness, exhaustion, dull headache. Abdominal symptoms continue but no worse and no further diarrhoea which is good.

So I'd like to know whether it's just a normal virus I can 'push through' but rest in between - or something underlying and insidious. I just don't understand why, after 7 weeks, my body isn't getting properly better at all.

Peaceofwildthings, I'd LOVE it to be worms! That actually made me laugh! If it were something as straightforward as worms, I'd be happy at this point. Presumably they'd have been detected in my first stool sample, however?

So now I'm waiting for the follow up appointment with the GI consultant, if the referral letter's been sent today, and for the blood test and stool sample for signs of inflammation and the ECG tomorrow (what will that consist of?) and the chest X ray on Friday.

[TenerifeSea]

Sounds like things are moving in the right direction. Got my fingers crossed for you! The faecal calprotectin (stool inflammation) test will be able to rule in or out an inflammatory bowel disease which will give you more of an idea of what you're looking at.

Take it easy.

[Spinstar]

I don't believe it! Just come back from the 1.5 hr round trip to the GP where I had my ECG done today. While there, I'd asked about the blood test results and was told that 'part' of it was normal? I thought there was only one part anyway - the calprotectin test. Anyway, I get home and have phone message saying that the blood sample went missing so I need to go back for yet another one?!?

So I clarify that I was told 'one part' of it was fine - and in any case I thought it was only for one thing - and the receptionist tells me that there were lots of things they were testing for and the sample has gone missing....So I say again that I thought the results had come back and I'd got them today....So we go round in circles and now they're going to try to find out what's happening and call me again.

Meanwhile, I've had to make yet another GP appointment for a blood test to be done again next week. Every trip to the GP takes at least 1.5 hrs round trip (plus expensive inner city parking costs) and feeling as ill as I do, it's not exactly easy to get there nor to fit it in in the middle of a working day and also around the 2 school runs. So I'm slightly pissed off to say the least.

I'd already had to make a GP appointment for the end of next week to discuss all the results which should all be back by then - the chest X ray - which i'm having tomorrow, the blood test, the stool sample and the ECG. But now the blood test results won't be back till after that and I'll have to go back yet another time to the GP to get those results too.

How on earth can they 'lose' a blood sample anyway?

[Spinstar]

OK so they've sorted out the mess! No blood test went missing - they just forgot to take blood for 10 other tests my GP wanted to have done. However, the main test for coeliac's WAS done and came back fine! Yippee! that was the one the consultant wanted me to have done.

I've still got to go back next week for the other blood tests and am still waiting for all the rest too but it looks as if I'm not going to have to go gluten free.

[PeaceOfWildThings]

Is it any easier getting to your nearest blood test unit? I tend to pick up the form (or they could put it in the post) and take the firm to the unit in the local hospital. Or is there not a surgery any nearer you could join? Or one with a carpark?

Hope you get some answers soon!

[PeaceOfWildThings]

Maybe you could open a book on what it is, we all pay to guess and you donate to a supporting charity!

Seriously, hope you aee not too worried.

[PJ67]

Do you live in the uk OP? I've been having some bowel issues and looking into private treatments. There are various private hospitals do CT colonoscopies for around £500 and you can self refer. Hopefully you won't have much longer to wait but this may be worth considering if you aren't getting anywhere.

[Spinstar]

Peace, they don't seem to allow this - going to the local hospital for blood tests, which would be walking distance! Instead, I'm stuck with the GP and for various reasons, can't go to a new practice and have bene at this one for 25 years now anyway. No carpark at the usual one - so you have to go to the municipal carpark and pay and then walk for ages too.

PJ67, yes, I'm int he UK and have been quoted just under £2,000 for a private colonoscopy where I am. Even then, the private consultant's secretary still hasn't got back to me about whether I should wait for the blood and stool sample results and go for a colonoscopy, dependent on those results - or not. So I expect the consultant has more than plenty of private work and is not in a rush to clarify things for me.

Yesterday, I started to feel a bit better for a few hours and got really happy and optimistic. Today, having slept really, well, become happily occupied with some interesting work and meeting with a colleague - instead of still feeling better, I feel worse yet again!

Why? I've not even been dwelling on the symptoms or feeling anxious or anything and was feeling really good - mentally. My body is back to shivery ice cold feeling (despite wearing 7 layers and heating on), I feel sick, stomach pains worse, dizzy, flu-like ill feeling, cough, chest pain...

I looked up shivery without a fever - on the internet and think it mentioned this as a symptom of low haemoglobin - but the blood tests I had done weeks ago, didn't show this and I still can't have the next set of tests till next week now.

I've even now researched IBS, hoping it's that - but a lot of my symptoms aren't like that and it started for the first time over age 50, when I've never had stomach problems before. So I don't really fit that profile.

It just drags on and on and is making life so difficult and worst of all, upsetting the DCs too.

[PeaceOfWildThings]

I have changed surgery 3 times in the last year and at all 3 surgeries I've been able to pick up the blood form at surgery and take it into the local hospital blood unit. Just as well because getting appointments at any surgery is tricky and they often fail to get blood out of me (and 2 or my children who now need regular bloods done too.) So we don't allow' = 'we won't' = 'we can if you make a good case for it or make a formal complaint which could be used to make us look good if we introduce it as a new policy'.

Im still thinking gallstones/gall bladder.