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"

I think your consultant's view of probiotics are out of date too. When I visited Switzerland, an 8 day course of probiotics was prescribed with antibiotics routinely, when I asked the paediatrician about it, she assumed the UK did that too and didn't understand why they wouldn't. Additionally, they prescribed more when I had norovirus there, 20 days initially and more if I needed them plus I should eat lots of live or natural yoghurt. My gut is still a bit inflamed, I can't drink any alcohol or spicy foods yet and there are some things that really set it off. Really happy for you Spinstar that you are less anxious now

If you had any signs of inflammation when they did the gastroscopy, they would have taken a sample then to test for H pylori. Did they give you printed reports after your procedures?
If you didn't have any inflammation, there would be no point testing for it.
I don't think 13lb weight loss is concerning as you have been restricting your diet so much. Go and have a chat to your pharmacist, they'll be able to give you some remedies. Try and get back to a more normal diet as eating well will help your system get back to normal.
Hope you're feeling better in time for your hols.

Getinthesea, thanks for that link and also thanks mumofthemonsters. I will definitely try probiotics now as I can't see any reason why not and lots of you on here are saying go for it.

Aqua, that's another endorsement of mebeverine - so it would be worth a try if the pain gets too bad again as well as other stuff perhaps.

I've emailed the consultant's PA to ask her to sedn me a copy of the biopsy lab report results as part of sending a copy of the GP letter, whenever that's written - all in the context of saying how reassured I was that the consultant told me the biopsies were fine - so she doesn't pass on to him any doubt I might have about whether he's actually got the biopsy results or not. I'm 99% certain he was telling the truth and getting the report will put my mind at rest.

Oh fuck! I think the consultant has lied to me. I've just had an email reply from his PA to my request for a copy of the biopsy results report. She says the biopsy results are not due out for a few weeks yet!

So I've emailed to explain the consultant assured me at least twice in my appointment that my biopsy results were now out and were all fine - and so I'm surprised they aren't actually yet available - could she look into this for me please.

I made an excuse for the consultant and said perhaps he's muddled up the CT scan results with biopsy results or something - but I distinctly remember asking him twice, in happy initial disbelief, if the biopsy results really said all was fine and him confirming this each time.

This means I don't have the all clear at all then and nor can I trust my consultant, as I'd instinctively feared that I couldn't - and I may still have IBD/ulcers etc etc. The only other explanation is that the lab sends a one word reply to referrers either to say OK or not OK about patients' biopsies and then there's a wait of several weeks for a proper report - but is that ever the case?

The PA (known locally for her excellent efficiency) is more likely to be telling the truth than the consultant.

Now I don't really know what to make of this and hope she gets back to me soon - although knowing the consultant, it could now eb a week or so before she can get him to clarify this.

Am I right to feel concerned - both about the results but of course also about the consultant? Oh fuck!

Vvega

Thanks for this. I HOPE this is the case and he's had the verbal report as it'd be really strange if he'd told a patient that biopsies were fine when he hadn't actually got them at all.

I'm trying to stay with the fact that I think I'm v v gradually getting better and am adding more foods to my diet and although I've still got the gnawing, acidic, raw, upper gastric pain and low level nausea plus ongoing colicky feeling.

It's weird they never tested me for H Pylori at any stage despite 2 lots of blood samples and 2 stool samples and now biopsies. Is there some definitive H Pylori symptom missing that means the consultant is absolutely sure I can't possibly have this?

The consultant didn't see any inflammation in the stomach and he didn't mention anything mysterious being found in the colon either. You never had bloody diarrhea. He didn't see any stomach ulcers or he'd have told you that he saw a stomach ulcer. No biopsy from a lab will be telling him that, he was doing visual checks of the appearance of the tissues. So he looks at his notes and sees his own handwriting there going 'All Looks Normal' or whatever.
If the consultant didn't see any peculiarities during the scopes, then they wouldn't have been taking too many biopsies. Inflammation is something diagnosed by looking at the tissues not by biopsying them. If it was inflamed they may have done the H pylori test if it is not inflamed in any way then maybe they don't because it's not necessary but I don't know this.
H pylori is not life threatening in any way shape or form. It can be hanging around in people's stomachs for decades or their whole lives and cause no problems what so ever.
Your symptoms could still be stress related or hormonal changes due to peri-menopausal age or just plain untreated excess stomach acid. You would mostly likely benefit from some sort of medication to treat your stomach acid symptoms. That would break the cycle of you getting these panic-stricken reactions to your symptoms with your mind conjuring up all sorts of images and scenarios of undiagnosed disease. Which then makes you more anxious, which increases your symptoms and so on...

Vvega and Sadie, it sounds v reassuring that either the consultant may have already had my biopsy results from the lab verbally or he's told me all is fine, based on his own observations during the scopes. He did however use the word 'biopsies' more than once during the consultation, so I presume he really does have reason to say this - ie did get the results verbally already.

Sadie, I thought that H Pylori - whilst present anyway in a high proportion of the population, can cause ulcers in some and as my symptoms accord those I've read about, I'm still now sure why this hasn't been tested, according to the consultant and why he's said I had none of the symptoms of H Pylori problems.

Sadie, I'm not at all panic stricken. I'm more cross and frustrated at this stage about the consultant's contradictory, patronising and rigid manner. (I guess I should say I know more about him as a person than one might about a consultant, as I know several people who've been treated by him, some people socially connected to him and someone who was at medical school with him and their feedback meets my own experience of him as rather misogynistic/rigid thinking/bad listener).

Despite this weird discrepancy between what his PA told me and what he told me himself, I'm aware of still feeling better - albeit very gradually and interspersed with worse upper gut pain, either when I've not eaten for a bit or when I've recently eaten - so I assume that this is something to do with stomach digestive juices. It would just be ultimately reassuring to know for certain that I had no H Pylori induced ulcers and why a standard screening test for H Pylori wasn't carried out at the start of investigations, given the symptoms.

My calprotectin levels were over double the normal level -which is a marker for inflammation - so it's not as if there have been no signs at all of inflammation. The consultant also told me he hadn't been able to see much of my colon at all, during the scopes because the laxatives hadn't worked to clear the bowel. So his observations were compromised and incomplete.

With my consultant's reputation for not really listening well to patients and getting his own preconceived ideas from the start, this hasn't engendered full trust in him as a doctor. On the other hand, I'm largely living under the assumption that all is well and that my symptoms are not indicative of anything really nasty.

Looking on the bright side, since giving up tea and coffee, I've noticed that my regular irregular heart beat/palpitations, which I'd always assumed were a normal part of perimenopause, have virtually disappeared for the first time in years! I've lost all my middle aged weight gain and am back to the weight I was in my early forties - presumably by no longer eating cheese and oils/fats. My menstrual cycle has returned to a more preperimenopausal 28 day cycle, after a couple of years of slightly longer or shorter cycles. My cholesterol levels - measured in one of the blood tests - have come right down into the normal range for the first time in years and, as I've had to (for now) reduce my working hours and rest and relax more, I'm feeling in some ways in 'better general health' than I did before, aside from the on going stomach pain/nausea.

I think I just need that final box ticked in my mind - regarding biopsy results and possibly H Pylori - and then I can get on with adapting to an unpredictable stomach. I've decided that the best mind set I can cultivate for dealing with erratic stomach pain and occasional urgency for the toilet, is to think of it like a less predictable and more frequent menstrual cycle - whereby you sometimes know it's going to be 'one of those days' when you have stomach cramps for a bit and feel generally a bit lousy - but also know that this too will pass - before it then returns.

The difference with my stomach problems is that it's unpredictable. The other current difference is just waiting for that final box to be ticked that gives absolute certainty that no underlying ulceration is there and untreated.

Hi Spin, glad today seems to be more optimistic. I can only assume stuff about you from your posts unfortunately as I have not had the pleasure of actually knowing you in person. So when I say 'panic-stricken', I say that from the perspective of noticing big differences in your descriptions of events when you are relaxed and not stressed over the symptoms when compared to when you are. Just one example, when you had diarrhea again a couple of weeks back, you wrote about being 'incontinent' and not being able to leave your house. And that your abiliity to work was down to 'survival level'. Then just yesterday you said the longest time throughout this illness that you were going to the loo was about an hour. So in hindsight the reality was you spent an hour on and off the loo. But at the time while you were experiencing the symptom, in your mind you were 'incontinent' and your mind started thinking the worst. That was only about 2 weeks ago. At that same time you were saying 'DCs are very very down and upset again as I'm clearly not well at all today'. Again that was only a couple of weeks ago.
Would you say there is a noticeable and easily discernible difference in the way you see things when you are very very worried and the way you see them when you are not worried? This difference in levels I would call anxiety. If this anxiety kicks in very fast, and comes with very frightening thoughts and threats about the future, then I'd call that panicking to some extent.
So I hear someone sounding very relaxed and optimistic and then if a symptom appears there is this switchover to 'all is lost' kind of thinking. If a person is not noticing that in themselves, they can start believing what their thoughts of terrible outcomes are true and then we get the ratcheting up of the anxiety levels.
That's the point I am making about trying to find some suitable medications that have been proven to help such symptoms, so you would have options and support rather than having to manage everything internally in your head using your thoughts.

Hi Sadie, MN is a tricky medium sometimes to pick up the true personality of posters and extrapolate what mind set we're in when we post! In RL, I'm someone who 'wears my heart on my sleeve' and expresses my feelings in any one moment - not holding onto stuff or acting one way and feeling another. That's one of the things I like best about myself - and of course when I use MN, I use it almost 'cathartically' to post in the moment of a feeling, as a means of off-loading and I find people's supportive responses so so helpful.

I think my response to being more ill than I've ever been in my life has been in 'normal' proportion to what's been happening and not one of panic or anxiety - but I can see that some of my posts may come across as emotionally expressive, if I've written them at the height of things happening, especially when it's caused suffering to my DCs. Isn't that natural, maternal instinct? We all want to be fully there for our DCs until they no longer need us.

Throughout the last 13+ weeks, I think my underlying sense has been one of rational, calm endurance, underneath the upper 'waves' of strong and understandable emotions like fear and frustration. My on going motive is trying to figure out the origin of why I've been so inexplicably ill, when my previous self perception has been, lifelong, one of strength, health and vitality. It's a big significant 'life event' really to go from one state to another after over half a century of life!

Incidentally, at the earlier stages of the illness, I was incontinent and wearing 'protection' daily and nightly and spending half the night on the loo with diarrhoea and then parts of the day too. Latterly - ie the last 2 to 3 weeks maybe (I lose track after all this time), I've had occurrences of diarrohea that have had me on the loo for up to an hour and uncertainty about whether or not I'd need to 'go' urgently in the middle of a working day - thus wearing 'protection' in case of mild continence. But the real incontinence and diarrhoea were when I was systemically really, really ill.

The hardest thing to come to terms with, more recently, as I've felt a bit better, is that I'll have had a run of days feeling quite well and strong and more like my normal self and the DCs have perceived this too and become happier - and then, with no warning, I've suddenly had an exacerbation of symptoms - which - surely naturally - leaves anyone wondering if they'd 'got it wrong' and they weren't getting better after all? Human nature eh?

I don't think this is a sign of anxiety but just a normal human response to a different 'signal ' in the environment - whether that's internal or external. If the body feels healthy and well, don't we all then believe we are indeed healthy and well? If the body signals pain, don't we all then believe we may not be well and healthy? Is there anybody who doesn't have that normal response?

However, I now know that it's important to NOT interpret pain in the body (in my case, if the consultant is correct) as a sign of something significantly wrong - but rather to put it under the category of 'unpleasant and a nuisance but tolerable' (hence my model, in an earlier post, of my digestive issues as the same as a menstrual period - changeable, a bit of a bother but nothing to get too upset about). This 'learning' has only come about recently of course since my consultant told me last Wednesday that I was OK and only had post viral IBS (and of course presuming he's got this right).

I appreciate that lots of your advice comes from your own lived experience of your own stomach issues and you clearly have made good use of skills you've learned and want now to help others too - so many thanks for your input. It is hard, isn't it, to 'read' the person between the lines and to make assumptions based on MN posting rather than RL encounters.

The continuing good news is that when I've had pain over the last few days, it's been objectively less and my interpretation of it has also been different - ie "this is uncomfortable and a nuisance but not life-threatening - so try to ignore it, breath through it, work around it". I hope I can continue both to have less physical pain and a more pragmatic response to all symptoms when they occur. Thanks again Sadie.

Glad it's all getting better.

Post viral IBS is what I think I have too, and the good news is that the Iberogast, the strange German herbal concoction I mentioned above, seems to be working really well after only about 4 or 5 days, to the extent that I am going to try dairy again tomorrow. I got mine via eBay, but Amazon have it too.

Thanks, getinthesea, vvega and Confused! I'll look into things to try like Iberogaat. Meanwhile, I still seem to be improving, with the symptoms still there but for the last 10 days, not quite so intense.

The hol. is on course to happen near the start of July and I'm hoping we can still do a lot of what we'd planned, even if it's less energetic. I'll have to sit in cafes having tap water whilst DCs eat out but that's OK!

Confused, I read through the Amy Kings Alias thing and it sounded like we were describing the same illness, the same pre-illness no sign of stress or anxiety lifelong, the same insistence from the medics that it 'must' include stress/anxiety, the same lack of a definitive cause and diagnosis - leaving only that cover-all category IBS....I'm sure there's a specific and definable illness that still doesn't have a name but results in the symptoms I - and others - have experienced.

My consultant's PA has been in touch to say sorry, they do indeed have the biopsy results!!! So she got it wrong and not the consultant (apologies, doc!). She said she'd send a copy of them to me - although she didn't comment on what the results say - but no sign yet of them coming. Meanwhile, I seem to have been sent another appointment with the consultant for about 5 weeks time, although he'd told me he wouldn't need to see me again? This seems to be another private appointment too, not a NHS follow-up.

Anyway, I'll go along and hope to be able to say to him by then that I'm almost back to normal - but we'll see. I'd still just like to be sitting looking at a copy of the biopsy results so that this can affirm what he told me that there's nothing found - but I think I just need that final piece of reassurance. Hope they send it soon.

Hi spin how are you? Any closer to a diagnosis?

Hi ELR. Thanks for asking after me. The biopsy results plus consultant letter arrived at last and from what I can tell, the results do indicate that nothing nasty was found - which is very reassuring.

However, I'm still left in the dark about what's wrong with me and why I've been so so ill. I've now read up a lot about IBS and certainly my initial symptoms seem a lot more extreme than you get in IBS. I had a lovely run of about 7 to 9 days feeling so much better but in the last few days have relapsed yet again!

I'm getting the feeling of having been trampled by a herd of cows - bruised gut feeling - plus specific parts of my abdomen that feel acute, burning pain - and that 'too full' feeling after eating v little, in my upper abdomen. I fel so so ill this morning, like I had flu again - that I thought I was going to pass out - but fortunately this passed.

I've got this horrible swollen sore tonsils, cough and 'raw' throat feeling, which I presume is acid reflux? I feel worse, the more I talk - rather than if I do physical exercise - which is weird. I assume this is all part of normal IBS however, as that's what the consultant has put in his letter - "post viral IBS". Given I genuinely felt so ill I thought I was going to die - back in March/April - much much more ill than I felt when hospitalised with viral meningitis in my 20s, yrs ago - it seems a bit of a pathetic 'diagnosis!

A medical acquaintance has recently suggested I might have endometriosis - which isn't something I'd thought about before at all. Anyone know if what I've got/have sounds anything like that? In any case, I think that's incurable - so probably not worth pursuing further investigations for it and I assume the CT scan would have seen something anyway?

If no inflammation was found with the biopsies, do I assume that my high calprotectin levels from earlier - which indicate inflammation - were just an anomaly? - or does it mean just that inflammation got better? I don't feel fully better however and I must admit, that what the consultant told me was just 'gut spasms' still feels more like burning acid and acute pain.

Anyway, his advice was to eat normally, don't touch probiotics and take mebeverine. I'm not going to pursue that medicine at present as I'm using other ways to tolerate the pain but when I get more time (I'm trying to get back to more work now), I'll buy some probiotics and that German stuff that was mentioned here.

Generally, the symptoms seem to get worse about every 8 to 14 days - so not sure what kind of pattern that might be? Maybe it gets worse with each period and each time I ovulate, so is partially hormone related - but it doesn't quite 'fit' my cycle. It feels like after some days of eating, my colon fills up and then presumable begins to spasm - causing pain, urgent need for the loo (but not diarrhoea now) and then afterwards, further spasms/ pain. Is that how it goes with IBS?

If it's just related to the physical spasming of the guts, why is the Fodmap diet supposed to be helpful or indeed probiotics? If it's gut movement, how does that relate to reaction to food types or bacteria? I suppose my consultant believes it doesn't relate to food or bacteria as he says eat anything and don't take probiotics.

Hope I'm not boring people with such a long thread - my longest ever on MN! It helps to write it all down and see the progression of my illness. It's interesting that, despite not worrying anymore about having anything life threatening or indeed totally life-changing - and feeling much happier and relieved, this calmer, positive mind set isn't influencing the recurrence of the symptoms. I guess the only control I have in all of this is in how I respond to the pain - and the more information I have about exactly what causes this kind of pain, the more I'm able to cope with it.

I try to bring to mind an image of my guts juddering and roiling in spasms and when that happens, I try to stretch through it and I've swum, done exercise etc or just relaxed. I still don't fully understand the mechanics and science of why IBS happens, what it is and why you can't fully get over it - although my consultant did indeed tell me I would recover...maybe it just takes a lot longer than 4 months. I'd LOVE to be consistently back to normal one day.

Hi op, I've just read through some of your thread. How are you feeling? I recognise lots of your symptoms, especially the flaring up and then calming down of the discomfort. I've also had the nasty stuff ruled out and I've self diagnosed IBS. At the moment I feel fine, but when the symptoms flare up I get such a sinking feeling. I hope you feel as if things are improving for you.

Thanks for asking, Scarlett. Haven't posted for a while. In a good patch at present and we got away on the family holiday that my DCs had worried would never happen. Managed lots of physical activity - kayaking, wild water swimming, long long walks. Some parts of some days I had that 'trampled by cattle' gut pain accompanied by flu-like malaise and exhaustion but given I was OK a lot of the rest of the time, I'm really pleased I was able to give the DCs more or less the holiday they'd expected.

I still can't see any links to typical IBS symptoms at all, now I've been monitoring myself for 4 months. On days where there's more stress, there's NO worsening of symptoms and in fact on a few recent stressful occasions, no symptoms at all! Bowel movements are the 'best quality'! they've ever been in my life - ie no diarrhoea and no constipation and the 'perfect' poo type according to the bm scales you see medically.

I've eaten more 'bad' foods for IBS - like on the higher fodmap lists - yet found no worsening of symptoms at all (eg cup of hot choc and whipped cream with marshmallows!; cheese; onions in small quantities; cake).

The worst day of symptoms coincided straight after my absolute best and happiest excursion/activity, part way through the hol. (wild water swimming at dawn after v long walk watching wildlife) when my mood was extremely happy and relaxed.

The one link that happens most consistently - although not every time - is that symptoms/pain tend to get worse, AFTER a bowel movement - which again is contrary to typical IBS. If I've not 'been' for a day or two, I tend to feel a lot less pain - so I assume that any movement then causes spasms to continue for the next few days.

I've still had some of the flu-like symptoms like sore throat/swollen tonsils and exhaustion - though not so much recently nor after extra activity either. I've been 'testing myself out' with increasing physical activity.

My best guess is that it's a post viral thing that is getting better still - although v slowly - but ask me on a bad day and I may be thinking - could it even be something like endometriosis or a small, unidentified small bowel ulcer?

Haven't put back on the weight I lost, although I seem to be eating loads - just v differently to pre-illness - ie far far fewer veg and no longer a vegetarian, more rice and potato (used to eat few carbs), chicken and cod and prawns. Having lived off what I believed to be the most healthy diet - ie mostly veg and fruit and cheese with olive oil, nuts, seeds, pulses, eggs - I'm finding that a less 'healthy' diet is giving me better bowel movements and also seems to be keeping my middle-aged spread at bay!

I see the consultant again later in July and I expect he'll discharge me. I've not taken any of the meds he suggested and am still happy to manage things myself. No way do I want to take anything that might interfere with my 'perfect' bms!

A bowel ulcer sounds like a possibility. Healthier, fibrous foods would irritate it and so would bowel movements, causing a flare-up.

How are you now OP?