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"

Theredjellybean, I will be calling the surgery on Tuesday for my chest X ray results but at my surgery, you can't even expect to get hold of a duty GP. This is what happened yesterday when i wanted to speak to anyone medical at all about my calprotectin result and they literally couldn't confirm that even the duty doc would be available to call me back that day, let alone my own GP. In the end, my own GP DID call me back as I was driving to the hospital for my X ray and I was able to pull in and take his call.

I am booked to see the private GI consultant on Wednesday night. When he saw me a few weeks ago, he said he'd put me back into the NHS to save money for me and at that time, he didn't think it was anything serious. It's probably going to be quicker to see him and ask if he can urgently see me for colonoscopy and CT scan on the NHS as he's also the NHS consultant anyway - but he may or may not see me as an urgent 2 week referral patient. I haven't had any bleeding from the bowel and my weight has stabilised. However, he'll now have the calprotectin result and I hope that's enough to get me fast tracked in the NHS.

I have a feeling that fast track NHS locally however may be a lot lot longer than a 2 week wait. If not, I'll definitely push for that but if the end of May is the earliest i can be seen and this would be privately, then I'll pay and do that.

My own GP told me he couldn't refer me for a colonoscopy or scan at all and that this must come from the consultant. So as I haven't heard anything yet about the NHS follow up to see the consultant, that's why I chased his private secretary to see him privately sooner - only he just does Wednesdays privately.

The situation with not being able to change GPs relates to a 'personal /family connection locally that makes it not possible for me to join the local surgery (bit complicated). So at the moment, I'm still with my GP of 25 yrs but they're quite far from where I live.

I am living in a surreal world today - chatting about my DCs futures and our future plans and thinking inside me whether I'm going to be able to make those plans or have a future with them. I feel weird acting as if everything is normal with them but need to keep up the act for their sakes until I know exactly what I'm dealing with. I feel breathless and exhausted and with back/chest pain and abdominal pain just through chatting with my own DCs and I find that really really scary. I'm still not sure it's just IBD going on because of the chest/cough flu like symptoms but maybe this is just a side effect of what's happening in my stomach.

I have a million jobs I need to do and no energy to do any of them. I'm reserving all I've got to cook and do laundry for the DCs and to just 'be' with them.

Thanks for that reference Marvellous. How do I access guest posts on here?

i am very shocked by your GP surgery , and I am sorry if i misunderstood , i thought you had lost weight. Your GP couldnt send you direct to colonoscoy that is right or for ct scan, but he should have done an immediate 2 ww referal... it doesnt add up at all ...the symptoms you describe would easily fulfill the 2 ww rules and it doesnt matter what locally the situation is, the 2 week wait rules for potential cancer cases are the same over whole of england.

another thought, what you describe sounds like you need a colorectal specialist more than upper GI , the consultant you are seeing on wednesday ...will he have all your results ? bloods , cxr etc....??? its hard for doctors to really make sensible plans with patients if bit sof the jigsaw are all over the place.
I would be most concerned about this, as you havent had bowel cancer ruled out yet ( sorry to be harsh) and that needs a colonoscopy ...and quickly

Hi OP

I just wondered whether you had considered it might be chronic pancreatitis? More common than other pancreatic conditions with a raised FC level. I'm not a doc but it might be worth thinking about/looking at.

I agree with Psipsina. I think an upper GI consult is the way to go.

Theredjellybean, I have lost 8 pounds in weight at the start over about 14 days but now stabilised at this weight and no longer have diarrhoea. I never had blood in my stools or a sign of this in the first stool sample and the first blood test weeks ago but because of the initial severity and length of the first 19 days explosive diarrhoea, waking me from deep sleep, plus weight loss and feeling incredibly ill, the private consultant said, in his letter to the GP, "it would be sensible for us to consider a colonoscopy and CT scan".

I thought this would mean the GP in the NHS would fast track refer me for this but when i finally got to talk to him briefly, he said this was something only the consultant could do. This then meant waiting till he had time to write back formally to the consultant asking him to see me back in the NHS for a follow up appointment after which, if the consultant then saw fit, it would mean he referred me int he NHS for a free colonoscopy and CT scan.

I'm not even sure if that NHS letter from the GP will have yet bene typed so that's why I chased the consultant's private secretary over 6 days asking her to clarify with the consultant whether his referral for a colonoscopy and CT scan were dependent on my latest bloods and stool tests. No word from him at all but in the meantime, I pushed for a private follow up as it could be ages until I got a NHS one.

It's only after that second consultation that I'll know whether he'd fast track me in the NHS and if he won't, my back up plan is to push for the next free colonoscopy slot privately (but at £2,000!) at the end of May which was their first private slot.

Obviously bowel cancer and pancreatic cancer are my worst fears. Even the locum GP I saw for a 3 minute appointment when I was feeling extremely ill and barely made it to the surgery, was adamant that he'd do nothing at all till I'd seen the consultant again. That GP never even examined me and barely looked at me at all.

I think the consultant - who would be the same person whether in his private or NHS capacity - covers all parts of the digestive system so could consider upper and lower digestive tracts.

As I've not had further diarrhoea or blood in my stools and the abdominal symptoms have plateaued since I started only to seat a few bland foods, I'm not sure the medic will be rushing to fast track me - or at least I'm assuming this in why not.

But then after 7+ weeks of being extremely unwell with abdominal pain, especially after eating/fullness after eating little, sense of urgent need to go to the loo waking me still from deep sleep, chest pain/cough/back pain, abnormally raised calprotectin level in stools, rapid heartbeat after little or no exercise, headaches/nausea, feeling very weal and flu-like, weight loss (now stabilised at new level), very very dizzy at times - sometimes before eating, sometimes after eating, sometimes while lying down and relaxed - I just hope I get some answers soon.

I am increasingly frightened and less able to hold it together for the DCs and then feeling terribly guilty if I get emotional in front of them. I wish they had someone else in their lives that they could talk to either now or if things get worse.

Yes I can imagine that is perhaps the worst aspect of it. You need someone to lean on, to take care of you a bit and them when you cannot face it.

May I ask how old they are? I can't remember if you said earlier.

They are 13 and 14 so not little but not really coping with their usually very strong mum being ill. I feel even worse today. I woke feeling very dizzy as if I would faint even just sitting up in bed and more sick.

I tried to act normally but have felt even worse. Keep going to the loo and having foul smelling yellow poo today and feeling v sick and faint with stomach pain and back/chest pain/tightness in chest. I'm even finding it hard to sit upright.

I tried to hide it from the DCs but they've picked up that I'm not at all well and are really angry - which masks their fear. It seems a v v long time to wait till Wednesday night to see the consultant again and even then he won't actually do anything that day.

I'm supposed to be working on Tuesday and then getting to the GP surgery for more blood tests and if I'm anything like I am feeling right now, I won't even be able to leave the house.

I am really not coping. I feel too physically ill today to get on with even the most basic stuff, although I did make DCs breakfast earlier. I'm trying to grit my teeth and fight against it all but it's not working. All I really need to do today is 3 loads of laundry and make a few meals for DCs (yes, they're completely unable to cook food themselves I'm afraid and rely on me for anything more than toast). But I feel like I'm hospital-bed level ill.

Useless to go to the out of hours service though as it's at least 1 hrs drive away and there'd most likely be a 4 to 5 hr wait and nowhere to sit. Not bad enough (surely?) for A & E which is just down the road and anyway, I can't leave the DCs and go into hospital overnight as I've still not got any kind of care for them (OK don't want to go into detail but one has SN).

I can only hope I stop feeling so dizzy and whatever's going on - which I presume relates to my pancreas with these symptoms - will calm down in a few hours. I wish the DCs had someone they could talk to who they love and trust - but that person is me and they've got no one else.

It honestly sounds as though you should be at A&E right now. Is there really no one who can have your DC?

if you think this is your pancreas ,i would phone ooh
if it is inflamed ,treatment is nil by mouth -complete rest of it
so you need iv fluids ,which means hospital.
as my colonoscopy was clear (biopsy not back yet)they are now looking at my pancreas and small bowel.

Hi Spinstar, do you have any relatives within a couple of hours away? It would be so much easier for you if you could be ill knowing you had a back up plan for some support with the DCs.Have you any one else to discuss these issues with besides us on here?

I think you need to ring OOH and ask someone to come round. Say you have no one to help, you are in bed and can't get up.

This sounds a lot more serious than it was. You really do need to get some help in, straight away - is there anyone you can call on to watch the DC for a while? And maybe get a taxi to OOH once you have an appointment?

I have a feeling they would take one look at you and admit you.

Sorry didn't realise you have an OOH without an appt system.

A&E it is I think. Seriously. You need to get seen. Preferably by a new set of eyes. Can you call 111 and talk to them - it's possible you'll get someone sympathetic and they may even send an ambulance.

Also let the DC come with you if there is no one. They are old enough to communicate their needs to a nurse or someone who will fetch them something to eat and so on.

Hi Spinnstar, firstly apologies I haven't managed to read the whole thread yet but I have had ulcerative Colitis for 15 years. You seem a bit distressed so I am going to post a few basic things
(1) Stress - what ever your end diagnosis stress is not good for it. Try to relax. Lavender oil, hot bath anything that helps.

(2) During a flare of a bowel problem you need a low residue (no fibre) diet. This is no time for loads of greens. So lots of white easy to digest food, white rice, egg, potatoes, cous cous etc The kind of thing absorbed almost completely. You can buy in the chemist high energy low residue supplements. Complan etc if you are ok with dairy.

(3) Google - colitis activity index and British gastroenterology society guidelines on colitis management (something like that sorry can't find link at the moment).

(4) Do you know what your CPR, ESR and ferritin blood levels are?

(5) Try not to run away with yourself Colitis is a pain in the ass (literally) but it's very treatable and you can have a very good life with it. Same for Crohns (although its a bigger pain in the ass) chronic pancreatitis is no fun but it's very treatable too. Try to avoid worst case scenario's you are a strong woman. You will be fine.

(6) This is no time for alcohol neither your colon or your pancreas need it.

(7) Avoid people who advise homeopathy, herbs, diets etc etc you need proper medical care. Treatment proven to work by clinical trials.

(8) In desperation find your best nearest hospital and present yourself at A&E

Hth

Sorry missed your last post A&E by ambulance I think. The kids can be sorted by social services for a couple of nights.
Is there anyone from work even that has a teenager/student old enough to babysit for a few days?

I'm still here - just been resting. Didn't eat anything except a scrambled egg this morning and this may have helped by not eating, except that I now feel lightheaded with hunger at the same time as feeling like someone has poured acid into my stomach cavity, reaching round to the back. I also feel the same other kind of dizziness from this morning. I'm drinking water and not dehydrated.

A & E would be more stressful than I could bear as would OOH, which is miles away. I was there 2 years ago with 'normal' influenza and chest infection and had to wait in my car with DCs in tow that time, lying on the steering wheel in ice cold weather late late at night, as there was nowhere left to sit in the building. I then had to go in, see the doc, get a prescription for antibioitics and then drive us all to a late night pharmacy where you had to wait outside and hand in your prescription through the 'hatch'.

It was so so cold - well below zero and I remember slumping on the pavement, whilst waiting for my medication to come. It felt like it practically killed me but I was nothing like as ill as I am now and I just can't face the whole waiting thing again. I feel too ill really to access services.

There's no way any doc would come and do a home visit. No way at all. There just aren't the resources for this.

Carrie, thanks for your input. Before all this, I was a teetotal (for 18 years), wholefood vegetarian (for 30 years), healthy, hearty strong woman. For the last 7 weeks, the only things I've eaten at all are chicken, cod, rice, potato, white bread, marmite, honey, rice cakes. banana and bio yoghurt. On this very very bland diet, I've not had full blown diarrhoea again but I've had better and worse days and today is really bad - with no change whatsoever in anything I've eaten or done and not really better in any way at all.

I can't understand it at all. Wfrances, having read your post, I thought I'd try no more food today and maybe this has calmed things down - but I'm hungry and I'm not sure whether I need energy or whether eating will make it all worse.

The DCs would absolutely hate hate hate anyone else looking after them and one of them has no friends anyway at all and would really freak out at going off to someone else's home. They are very obsessive and ruled by things happening in the same way at the same time. It's a last resort to get in help although that last resort may be fast approaching now. I'm desperately trying to keep everything as normal as possible for them for as long as I can.

No one from 'work' to help as I work alone for myself I'm afraid. So no colleagues.

I'm holding out for the night and being able to sleep or just lie down and rest. Can i just say how much I appreciate the kindness of all of you here. This is going on and on and on and one thing keeping me relatively sane is just posting an update from time to time.

Hi there, glad you're hanging on...

I feel frustrated that there's nothing I can do, or suggest, to actually help but if you just want a listening ear then that's available of course

I hope you do manage to get some rest tonight. They haven't given you any meds to help with the pain at all I take it?

Wow spinstar I am so glad to hear you are ok. I have kids with special needs too. One has Autism the other is as yet undiagnosed. So I think I understand but you do need to put yourself first because you need to be there for them long term.

Anyway the best way to keep yourself out of hospital is hydration possibly dioralyte relief (tesco delivery might have it) failing that lucozade sport will do. You also need calories if you have tinned soup or fruit drain and drink the rest. Personally I would drop the Bannanas unless they are really ripe.

I was just mentioning the alcohol as its such a favourite Mumsnet pastime.

I do think it sounds like Colitis and its very poor they are not fast tracking you. I think you will need steroids but they should kick in fairly quickly.

Codeine based pain killers are goid for pain and diarrhoea. I think you are too sick for imodium.

Colitis is an autoimmune disease so no amount of healthy eating or diet will sort it. I think the dizzy feeling is from losing sodium and potassium. You need dioralyte.

There are many threads on the internet about the Activia yoghurts, just in case it is those you are eating. Not sure about the truth in that but some alleged they caused fierce gut reactions - loose and mucusy bowel movements and stomach cramps.
I have gastritis and some yoghurts sting the hell out of my stomach.
I would try to eat something because if you don't eat you will just feel worse and get weaker no matter what and that will lead to adding another problem on top of the ones you have.
Can you get some Complain or some Ensure or other food substitute drinks?
I know I keep saying about taking paracetamol or something. I just feel if you feel better in yourself by taking normal painkillers you might be able to eat more. And feel better and be able to do more things.
With gastritis I was told by the consultant that the level of pain is not proportional to the amount of inflammation you have. So you can have a lot of pain but the gut might only be moderately or mildly inflamed.
Don't assume you are doing more 'damage' because food is hurting your stomach that is not necessarily the case. Doc told me to take Motilium and paracetamol as needed. I already take Losec every day and I am fine on it. If I stop taking it I get the stinging pain in stomach and the cold liquid feeling you talked about earlier which is just excess stomach acid...

Psipsina, it's been week and weeks now of pain and not even a diagnosis let alone any pain relief. I did ask my GP on the phone call the other day if there was anything I should or could take whether vitamins or probiotics or painkillers and he said take nothing till we know what's wrong. But then he doesn't have to live with it, work with it, care for DCs with it. I can barely walk straight now or sit up straight.

I'm afraid to take anything or alter what I eat in any way - except maybe restrict more - so no yoghurt today. I've eaten some cod and mashed potato and I do feel worse actually again but how can I eat nothing and be in this kind of pain and still carry on with normal life?

I bought dioralyte at the start of it all but again can't take it as I have blood tests coming up again on Tuesday and they want to see how my electrolytes are without any other input I think. The first blood tests weer abnormal but they were sure this was because of the time it took for them to be couriered to a city lab about 2 hrs away. (that was through the private GP I saw at the start).

How can I go from being utterly utterly healthy and well for 51 years to the state I'm in now? I still can't fully believe this or understand it.

If I have to take steroids, will they make me angry/moody and get swollen and 'moon-faced' shaped? I don't mind so much the physical appearance change but the thought of being angry and moody in front of my DCs is awful.

Lifelong, I've never taken anything really other than paracetemol and ibuprofen (and only started taking that on and off about 2 years ago) - and have always always hated the thought of any tablets or medication of any kind. It's going to be a huge adjustment but right now, I need to get better whatever the cost.

Everything I read on the internet about medications for colitis related disorders says the meds side effects actually give you all the symptoms already have - like nausea, diarrhoea, dizziness, abdominal pain. Seems really weird to take stuff that helps but also harms?

I also hate the idea of taking stuff that seems to help even though medicine doesn't actually know what causes things like colitis - or so it seems to say on what I've read - IF it is colitis.

I wish I could get an actual diagnosis but this still seems to be weeks and weeks away even if I pay privately.

Spin - how is your wee?