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"

ELR - I've not had my thyroid tested but this was mentioned by the consultant at my last appointment with him.

Ruby, my B12 levels are fine I think from the two blood tests I had a few weeks apart.

Nickers, thanks for your advice and you're totally right about me needing to get more support generally in my life - beyond all that's happening at present.

So yesterday morning, I woke feeling totally wiped out but by the late morning, I felt so much better, I actually mowed the lawn! The contract between early morning and later on was dramatic. Never experienced anything like that before. Morning saw me bed bound and barely able to sit upright with all the symptoms going on - the flu like ones. By afternoon and also today, I'm almost - but not quite - feeling back to normal and have even done more in the garden today - although the continuing spinal pain and chest/back pain plus dry cough remain and slight headache - but nothing like the level from before.

I now seem to be totally constipated, so the laxative on Monday afternoon is going to produce some big results!

So, still speculating about all this, I think the digestive issues are very very slowly getting better (I really hope) on a very bland diet of mostly rice and chicken. The other symptoms may well turn out to be post viral rather than full blown CFS. On the other hand, when I'm having a bad few hours, I feel totally different and speculate more negatively, as I'm still having times when I'm more ill than I've ever been in my life.

I presume now though that if I had something really really nasty like cancer, I'd not be having periods of time feeling much better. I'm not sure if it's the same with untreated IBD? Would things fluctuate to this degree?

I am feeling amazingly happy - when my body feels strong and functional again. Even if it doesn't last, the contract between feeling terrible and feeling almost normal make 'normal' feel like heaven! It really makes me appreciate health, rather than taking it for granted. I've had a few 'false dawns' though over the last 8 weeks and I may go downhill yet again - but right now, I'm almost ecstatic that I'm not crumbled on the floor, barely able to move.

Tomorrow I have to not eat and then start the Moviprep at 5pm and then at 8pm - so I'll be in for a long night. I've now lost 9lbs in weight and expect this will be more after the Moviprep day. This is the entire perimenopausal middle aged spread that I put on over 2 years and that nothing whatsoever shifted. I just don't want to get any thinner though.

I have been finding your support - all of you - incredibly helpful over the last weeks and want to say a massive thank you so far. There are so many wise and kind MNetters out there.

Another thought (can you tell I have had similar problems) before I had diagnosis of hypothyroidism one of the things they tested for was Addisons disease. It's also autoimmune but has symptoms including fatigue, sickness, diarrhoea and weight loss. It seems like it might fit?

Ruby thanks for that possible suggestion. I just don't know what's going on at this stage yet and want to consider anything.

Thanks, Nickers! Yes, I am dreading 5pm but I'm trying to think that by tomorrow night this part will be over. I'm hoping I get some answers tomorrow too.

Yes, it's the contrast between good and bad days that makes you ecstatic on a good day. Today isn't so great - started by actually going to the loo for the first time in 5 days! This seemed to set off more pain and nausea. However, that's calming down now and I'm getting hungry but won't be able to eat again till tomorrow afternoon earliest.

I'm certainly going to lose a lot of weight just in the next 24 hours.

I've tried to explain to the DCs that I won't be totally there for them tonight - but trapped on the loo and will have to give them clear instructions to make their own microwave meals etc. However, I'm hoping to keep things as normal as possible for them tomorrow and have updated their school, just in case something untoward happens with the procedures and I'm kept in hospital. Hopefully, it'll be over before I've got time to worry and really, the only main concern is what will they find?

I guess I won't get biopsy results for 2 more weeks?

I'm sure you've heard all sorts of horror stories but sometimes people exaggerate for comic effect. I've had a few and I promise, it's not that bad. Best of luck and relax. Let us know how it went. x

Good luck spin, hope it isn't too ghastly.

Will be thinking about you, Spin.

Thanks everyone. I'm already back home now and from what the consultant could see, he didn't find any obvious tumours. This is very good news, although reserved a bit until I get biopsy results and CT scan results.

Although I arrived for my appointment at 7.45am, I wasn't 'processed' till 8.50am and I'd just started to go through my list of questions, when the consultant appeared. He was in a mad rush, needed to go to a meeting and was brusque with the poor nurse who was starting to answer my questions.

I had to dash to get changed and had no time at all to talk through what would happen - just sign the consent forms.

After an entire night (with a block of literally 8 hrs at a continuous stretch from 5.30pm till 1.30am - 2 hrs sleep and then onto the loo again - I thought I was well washed out....but apparently not!?!? My colon was 'very full' and this didn't pleased the rushed consultant at all!

So he couldn't see everything or take any biopsies from that end - but didn't seem to worried about this. The gastroscopy was worse - psychologically - but the colonoscopy hurt more. They didn't tell me how to use the gas and air properly till near the end - so that wasn't very pleasant. Near the end, it was proper pain and the consultant seemed angry when I moaned and told me not to and at that point, the nurse told me how to use the gas and air at last.

The there was a period when I spaced out and couldn't really hear what the consultant was saying as he mumbled anyway and I was asking the nurse to translate for me, even though their first language wasn't English and the consultant's was.

So I did finally get more compus mentus at the end and in mid procedure asked the consultant v clearly what he thought. He said the results would be back in 2 to 3 weeks and they'd send the appointment but from what he saw so far, it looked OK. This still doesn't answer why I've been really ill for 8 weeks - but it seem likely - although not definite, that they've ruled out obvious cancer - which is a big relief.

He told me to start eating fibre again as I was clearly totally bunged up. I'm not sure if the laxative will continue to work now and mean I still need to stay near a loo today and beyond - but I'm planning to do the end of day school run, as I did the v early one this morning.

I'm going to try to sleep a bit as I've not been properly to bed and the gas and air is still making me spaced out - and possibly lack of food too. At least I safely drove there and back and am home so much quicker than I thought I'd be.

Got the expected sore throat now from the tube down my upper passage - but otherwise, don't feel too traumatised and am just glad that's over. I assume the consultant was having a bad day, as he's bene fine with me so far - but he has a questionable local reputation at having little bedside manner and the nurses seemed 'cowed' by him.

I think the procedures would have been less difficult if he'd had time to be nice and careful and kind and I'd had time to ask him questions before he began - but it was still manageable without sedation. I was the only person there today of loads waiting - without an escort - and I think the only one without sedation.

Bit shattered now but still surviving.

Well done girl! You got through it and are home, well and able to look after them after school. The consultants don't like being asked questions in my experience, they like to say as little as possible. They don't speculate and they don't generalise and that's a good thing.
If its stomach acid at least doc can give you something for it. If its hormonal shifts causing the sickness and fatigue (like in pregnancy) then it might lessen over time as the lower levels stabilise. At least if you know what might be causing your symptoms, it is easier to manage them because you are not stressing over some terrible unknown illness.

The consultant sounds horrible! I feel properly angry at him telling you not to groan in pain. .
I'm glad that the news so far is good, and that you are through it and home. You are very brave. .

Thanks, Nickers, Sadie and SirVix. As long as the consultant is doing his job properly, I can forgive him for his attitude today. I wish I could get all the results sooner than 3 weeks time though.

I slept for half an hour this afternoon but have been on the go since then but the DCs are happier that i picked them up, made their meals, changed their bedding and didn't have to go to stay elsewhere.

I'm now in more pain in the upper abdomen which I presume must be where they took the biopsies? I thought there were no pain receptors in the stomach/colon but must be wrong. I'm also still needing to dash to the loo and hope this doesn't go on all night.

I've eaten an apple and a cooked carrot tonight and hope this will be OK and actually help, if I'm now bunged up!

Not sure if hormones are playing any part in this as the symptoms haven't followed any pattern around menstruation and ovulation and I always know where I am in my cycle. I stopped getting the racing heartbeat and sweating waking me from deep sleep, as my abdominal symptoms abated over the last week or so. I've more or less stopped getting the daytime shivers/ice cold feeling but am still generally colder than normal. Got no headache or dizziness now - only some nausea since taking that horrible laxative last night.

Now I can't be sure what symptoms relate to that Moviprep powder, or the investigations today where lots of air was blown into me or the original unsolved illness.

I just feel so happy and hopeful - but am still reserving judgement till the next consultant meeting and all results. I presume that I'd not be getting better if there were anything badly wrong, although i still don't know whether the symptoms will return yet again.

I've got 2 days off work now - which i set aside in case I'd heard back news - so I can rest and relax and maybe catch up on some jobs too. I hope I get some sleep tonight and am not at the loo all the time, as it was all a bit traumatic today and a good rest would help.

So glad it's over, Spin. The pain in your belly is probably caused by the air which they use to inflate the colon for the scope. You could try lying on your back, clasping your knees to your chest and rolling gently from side to side. Sounds a bit comical, but it can help the 'passage'.

Moggie, thanks for that advice. Still in some pain but not so bad and have now begun to add apple and carrot to my diet in small amounts today and a little bit of cheese, to see how this goes, after 8 weeks of no real fruit or veg except the occasional banana.

I managed to sleep for a full hour in the middle of the day today, which was bliss! I'm still feeling generally better than I've been in 8 weeks, despite what I think are the after effects of biopsies and air in my colon (that felt like the movie Alien where the creature bursts out of the belly!).

Above all, I'm feeling so so happy because i can't believe anything really bad will be found, if I'm continuing to improve.

I was looking at another MN General Health thread about a virus messing up digestive system and it sounds so like what's been going on for me, including the dizziness, except that mine's been brutally, life-changingly bad for over 8 weeks. I'm still wondering if it's all just been complications of flu - a really nasty virus that's affected me in a way I've never been affected before.

The contrast between how ill I've been and how I am now - which is still only about 55% of the normal me - but SO much better - is simply fantastic!

Still improving! However, I'm now totally bunged up and not sure what's 'safe' to eat, to sort this out without irritating my gut lining? I'm now eating cooked carrots and also apples and still bananas along with the other foods I've been eating. But not counting the night of laxatives on Monday - that didn't even clear me out at all then! - I've only 'moved' once in over 2 weeks! I guess my guts are calming down, thought I'm still in some pain and feeling some acid - but I'd like to start getting my colon to behave more normally rather than on go or on stop altogether.

Can anyone suggest veg/fruit other than apples, carrots and bananas that might gently 'move' me without inflaming my digestive system?

I'm getting far fewer of the flu-like symptoms - no racing heartbeat or abnormally slow heartbeat, no night sweats and far fewer shivers except when I've overdone it. I'm barely feeling dizzy at all, instead of all of the time and the chest pain/back pain and dry cough are far far less too. It's as if i had flu and digestive complications for 9 weeks instead of 4 days.

Best of all is that the DCs know I'm improving and DC with SN is getting back to a more usual self, is much happier and is daring to talk about the family holiday -which I'm determined now to go on, even if I can't do as much.

All I really need to now is the 'all clear' from the consultant - but still no appointment come through from him about the CT scan, the biopsies and details of the procedures I had. I know it was only on Tuesday when the latter happened but it feels ages ago now and the CT scan is a week ago now.

It'd really help if hospitals could release results to patients as well as to consultants and also if consultants weren't so busy that they leave you 2 to 3 weeks still waiting and not knowing. If I were stll feeling terribly ill, I'd be in agony not knowing what they'd found. I'm assuming nothing bad now - but there's always that bit of doubt until you get the results properly and the fact that the consultant wasn't able to look properly at my colon as it wasn't clear. Is there something in there that he didn't see?

I feel changed forever after this horrible experience and it's not even properly over yet. I'm never again going to take health - and life - for granted and my heart goes out to everyone who has gone through anything similar and hasn't got better.

Oh fuck! It's got worse again. Why? It started to get bad after I'd managed a poo this morning, which I'd assumed was a good thing - but since then, all the symptoms have gradually got worse - the stomach pain/colicky feeling that I'll have diarrhoea any moment, the flu-like ill feeling - shivery cold (I'm wearing 3 fleeces and it's sunny and 18C here), utter exhaustion, cough, sore throat, chest pain/back pain. It's not been nearly as bad as this for about a week now or more.

To make it harder, DC with SN seems v v depressed and tearful about revision for pending school exams. DCs drew up revision timetables for the half-term, doing 5 hrs a day and have completed day one but instead of focusing on finishing a whole ninth today, DC with SN is very very low about all that's left to be done.

If I felt physically, better, I could have helped by taking us all out for an activity but i feel lousy and wish it were already bedtime, I feel so sick. So DCs are staring at their PC screens, boringly browsing the net and not wanting to do any of the 7 or 8 things I've suggested they could do. I feel bitterly inadequate and hugely frustrated - and now worried - that i feel so ill again. It's triggered off thoughts about maybe I do have something life-changingly wrong after all? How will I cope? How can I work and care for the DCs consistently, if every so often, I feel this ill yet again?

Is this just IBS now or could it still be IBD? Can IBS make you feel as ill as if you've got flu? Should I return to eating my very bland diet again and cut out apples and carrot? It's ages till I'll get another appointment with the consultant to get his diagnosis and advice and I just know he won't want to answer a single one of my long list of questions - but who else do i ask? My own GP, weeks ago, admitted he knew little about IBD and told me to ask the consultant but the last contact with him was whilst he was shoving tubes up me, complaining if I moaned and asking me questions that I could barely hear, as I fought against the pain and drifted off on gas an air!

More pain today in the upper part of my stomach - like acid burning - and feeling generally more ill again. Very, very depressing. DC with SN been in tears - angry and upset and both DCs berating me for ever having had them and telling me I'm the worst mum in the world. So I'm trying hard to hide everything from them and go off into a different room, so they can't see me in pain and also pretty upset myself.

Feel like I'm sinking into despair, after daring to think I was recovering and feeling so happy - only to see that I was wrong and whatever's going on is still going on.

Have gone back to eating just chicken, rice and mashed potato and scrambled egg again but the abdominal pain is still pretty bad as if someone has knifed my upper guts. Woken with the urgent feeling of needing the loo at 3am, just like was happening before - but 'false alarm'.

I feel utterly stupid for thinking I was getting better and also feel like the worst mum in the world. My DCs NEED me to be better. We'd started to talk about the future again and the holidays - and now I can't say anything helpful to them at all and I can't do the one thing they need me to do - get well again.

Still no idea when I'll next see the consultant and after 9 weeks now, no diagnosis, no treatment, no idea what my future holds and desperately, desperately need to get back to working full-time as we can't go on like this with me barely able to work at all.

Really worried about DCs - especially the one with SN. They are revising most of the time for their pending exams which at least distracts them - but are depressed and morose about this too and deeply unhappy about mum still being ill, just when we thought life was going to return to normal.

Don't know how to help them anymore.

Spinstar I have been following your thread from the beginning and I couldnt just read tonight. I have no concrete advice, Im no doctor but I just wanted to say you have been amazing at dealing with all this so far.

I cant remember if its already been done or suggested but how about going to a&e and just saying you cant cope anymore? Can anyone watch your dc for the night?

you are close to getting at the bottom of the pbm now. Hold on a little more xxxxx

Spin, now that you've had the scopes, would you consider trying some over the counter remedies. It is obvious you have stomach acid issues. These can cause stomach and backache. And a sore throat in the morning. The symptoms are worse in the morning because you are lying down and the stomach acid is creeping up the oesphagus, also your stomach is at its emptiest. The stomach acid issues will probably be ongoing until you get medication to reduce it and allow the inflamed stomach heal.
Also you can take paracetamol now too. Try Gaviscon 3 times daily and two Panadol when you are feeling bad. Maybe that'd work wonders and it won't make anything any worse. Have you tried that?

You really do need to eat vegetables. My consultant has been very strict about that, even on my lowest fibre diet, I've always been eating at least very softly cooked carrots, potato and sweet potato. He said that although fibre was causing me problems, not eating any fibre would cause even worse problems. It might be uncomfortable as things start to move again, but from your other posts, it sounds like your bowel is very congested and you really need to address that as otherwise it will probably get worse. A gentle fibre supplement might help. Something like Fybogel sachets, which you can buy over the counter.

You've so far had good news, in that nothing sinister has been found. You will probably get an appointment with your consultant in the next few weeks, so hopefully you'll get some proper answers then. But there's no reason to think you won't have a future.

A lot of recovery is a case of two steps forward, one back (and sometimes the other way round!). It's best to try not to get attached to either feeling better or worse, as then it is upsetting when you have a setback. You can still be happy and have a fulfilling life even with debilitating symptoms. Some weeks I only leave the house once or twice, but I'm not And there's a good chance this is something that will gradually improve. Mindfulness can help to cope with the ups and downs, as you can detach a bit and see it all as transient.

I don't think this is really a matter for A&E, unless you develop any acute symptoms (heavy blood loss, severe pain etc.). They are unlikely to be able to do much other than tell you to speak to your GP or consultant, as they are not there to treat ongoing conditions.

As you haven't been diagnosed with anything specific, I should think most things are safe for you to eat. I'd recommend only eating well cooked vegetables or fruit, nothing raw. Stewed apple or apple sauce is good. Also avoid skins and pips. If you're not currently eating much gluten, it might be worth keeping your intake low. It can be irritating to the gut and difficult to digest, even without having coeliac disease.

It sounds like you're not eating much, so it's not surprising that you've lost weight and are feeling weak. My dietitian recommends custard, cream, milkshakes etc. as easily digestible calories.

I hope that you get a diagnosis soon and some treatment to speed up your recovery

Littlefrench, thanks for your support. I couldn't think of going to A & E as my condition doesn't merit that but at times I'd pay anything at all just to have a diagnosis and some effective 'cure'.

Sadie, I've never used any medication in my life other than paracetomol and ibuprofen and since being ill, I've not dared take even paracetomol and will never ever again touch ibuprofen, given it might have been my use of this, to get me through flu and back to work quickly, that messed up my stomach.

The GP and the consultant told me not to take anything until I had a diagnosis so I'm not sure whether to try Gaviscon. Is that something similar to Rennie tablets? I've got some Rennie in the house, as I took some at the start of all this when I thought it was just some unusual stomach acid - but it did nothing to touch the pain.

I don't know anything about Gaviscon or whether there might be any contraindications, depending on my condition. I'm worried that without medical approval, I still shouldn't take anything - but it would be wonderful to be able to have something that alleviated the symptoms, at this point.

Martha, the effects of carrots and apples was so devastating - a massive exacerbation in symptoms, after several days feeling a lot better, that I'm scared to try again. I have been having mashed potato and banana a few times a week and doing OK with that all along -but either the acid of apples or the fibre and roughage of carrots seemed to decimate my digestive system again.

I'm totally off any milk products by the way, on the recommendation of my consultant, as he said they might be the worst thing, along with fats/oils to digest. So any milk puddings, custard etc are probably off the list forever now. I used to live off cheese, as my main source of protein as a vegetarian of 30 yrs but now can't have that at all and so I expect cream and custard are going to be off the menu too.

I haven't lost any further weight than the 9 lbs I've lost and am not sure I'm still congested, as I went to the loo on Saturday - which started this latest exacerbation of the illness. I don't know if I'm not eating enough or if my body has adjusted to the new intake, given I'm no longer losing weight. I too had thought that adding some fibre into my diet should be healthy and helpful but I've been so devastated by the effects that I'm now drawing back from any changes until I see my consultant again.

I can't describe the effect on the DCs of me getting worse again. I feel like I've let them down and can't give them the one thing they need and want - a healthy mum. They've withdrawn and are tearful and morose, especially the one with SN - and I've just had to keep away from them a lot, unless I can put on a better act with them of not being in pain and feeling OK.

Thanks for being so kind and continuing to offer support. The hardest bit by far is the effect this is having on my DCs. If it were just me on my own, I would learn to find a way to adapt my life to my condition but there's a limit to changed I can make with the DCs still need me to do all the domestic support and bring in a certain amount of money each week, so they can have the life they're used to.

Hi Spin, sorry you're still feeling poorly. Your consultant said to increase your fibre intake to prevent constipation. It sounds to be like you were better following the scopes as your system had cleared the backlog through taking the laxative. They didn't see any inflammation and IBD wouldn't fit with being constipated.
You could try taking some gentle laxatives like lactulose which will help to soften your stools and get you moving properly.
Gluten won't cause you problems unless you have an intolerance or coeliac so try and have some wholemeal bread or high fibre cereal. Chronic constipation can be rotten and lead to problems such as diverticulitis.

Soft fibre - soluble fibre - is what you need, not insoluble (that will be painful and very bulky). So, oats, potato (mashed) and banana is great. Apples can be harsh and anything raw, so cook some baby carrots, stew some apple. Avoid wholemeal bread and Weetabix and stuff that has insoluble fibre in.

Also insoluble fibre absorbs a lot of water so can give you a headache if you're not used to it, and make you constipated if you haven't drunk a lot.

Keep drinking as much as you can, whatever.
Just tips on diet here, sorry not much use in any other respect!

Thanks Snowfire and Psipp.

Snowfire, the symptoms were actually getting better BEFORE the scopes and before any better feedback from the consultant (so not as a results of him suggesting he couldn't see any cancer on first glance - but before I had any idea of whether I had cancer or not).

He said the laxative hadn't cleared me out much at all - so it's as if my bowels slowing down, actually helped the symptoms - although I know this is not a long term solution. The scopes increased the abdominal pain but in a way that felt like mechanical 'bruising' from the air pumped into me and the biopsies taken from my upper gut.

It was actually after recovery from scopes and following the suggestion of the consultant to eat more normally again, when I added soft cooked baby carrots and peeled apple to my diet, that things got much much worse on Saturday, following my one and only poo!

I guess I'm afraid to stimulate my bowels, as each time I've pooed, all my symptoms have then got worse - and today, the upper gastric pain is worse than it's ever been, to a point where I'm not sure I can eat anything more today at all. I keep trying Rennie tablets but there's no difference at all in the pain.

I know I do need to eat more fibre but it's just how on earth do I do this without getting even more ill, being able to work less and do even less and the DCs then seeing me declining further?

I'm not eating bread really, although I'm not gluten intolerant, as I've tried to keep off wheat, just in case that might give a low level sensitivity of my guts. I am eating plain rice cakes though and basmati rice.

I wish I could talk to a doctor today just to ask about Gaviscon or other over the counter remedies for the upper gastric pain - but of course no one's available, unless it's a real emergency. I don't suppose taking Rennie might actually be making this upper abdominal pain worse? I can't think why it's so so bad today.

Hi Spin your symptoms sound similar to mine. I'm a coeliac (controlled) but have been investigated for the past year with similar issues to yours. I have Bile Acid Malabsorption a massively under diagnosed condition responsible for about 1/3 of all IBS cases. It causes sudden urgent diarrhoea and a host of other symptoms due to chronic dehydration and electrolyte imbalances. Your doc can check for it with blood tests and its treatable with medication

Might be worth investigating