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"

Hi Spin,
You could try eating whatever you like now. What have you got to lose? If you continue to eat selectively, this is another thing for your mind to grab onto and start its anxiety machine churning again. The bland diet has resulted in both constipation (normal at our age) and diarrhea (occasional and hard to spell).

If you went back to eating normally, the DCs won't then see you eating your 'special' food diet because that is another 'signal' to them of how sick you are. And you can let go of the idea of finding a cure via some food and let go of the idea that you will have to have a restricted diet for ever and ever, and have to test foods, get sick, recover, repeat.
I know all about the 'house is too messy' thing. Oh yes sirree. I used to use that to shut my son up when he first started asking at age 4.5 if he could have a friend from school over at the weekend. Another couple of handy ones my mind provided me with was 'we are going somewhere at the weekend' and 'this is only a rented house we have no garden, when we get our new house, then you can have someone over'. And here's a great one 'I haven't decorated your room yet'. The poor wee boy soon stopped asking because he didn't want to upset his Mamma. Reason: my fear, my vulnerability, my inability to take a risk and ask another parent, because they'd have to call to my house, they might refuse, I might get rejected. I had a big shame reaction when he asked and it was like a knife turning in my guts and feeling trapped really trapped. Then I realised I had kind of not sure what to call it...if agoraphobia is a fear of leaving safe places, I had a fear of inviting people into 'safe' places. Because they might 'see' the real me and something 'terrible' would happen. My stronghold would be breached and have to be reality-tested. How can I put it...it was like the strong bonds between me and my kids would be 'diluted' somehow by contamination from outside people and my mind and body misinterpreted this as a threat to me and them. Wow, writing this now I've only just realised that this very second! You have helped me by having this thread Spin.
How wrong I was and in fact my fear and anxiety was the real threat to my son building relationships because I personally found it so hard to provide the contexts for those relationships to happen. Because What's Important to my kids are spending time and communicating with friends, their hobbies, their cousins, their computer games, tablets, favourite TV show, etc. What's Important to me was Keeping My Fear Away which got in the way of their What's Important stuff.
I always happily accept invitations for me or my kids to things but used to find it really really really really really hard to invite anyone to my house or kids in to play with mine. Not saying you are like that I just recognised the 'messy house' and that that thought led you to feel ashamed. It's not the first time you said that. So if you have ever had any of that sort of pain I am your sister in that, so hand-holding with you on that one.
I know we are off topic big time. When I learned Acceptance & Commitment therapy(ACT) I learned to notice thoughts and feelings without judging them or taking any 'meaning' from them. Now I can go ahead and contact the parent to have the kids over to play, it still hurts emotionally even these years on and 'head office' still issues 'dire warning' press releases but I just say to myself 'thank you mind but I'm not really in danger here' and mentally toss the press releases in the bin as such and get on with my life. We are having emotional pain anyway so we can choose to 'have' and accept some emotional pain in the service of improving and opening up options in our lives. What press releases is your mind issuing you with? 'What tabloid headlines is your mind creating?' And your mind is not doing that for no reason, its doing it because you are a mother who values her life and her kids' lives. Our mind has to have an internal representation of the world so it can decide what is safe for us or not. Like not touching hot things, it has to have a mental representation of 'hot' and consequences of 'hot' 'burn' etc. But the mind often does its job of policing too well and sometimes it can't really tell if the thoughts it generates are real or not.
You can choose to pick up the warnings and read them and believe them or you can choose to notice them occuring but toss them in the bin.
A great starting point is just putting the words 'I'm noticing I'm having the thought that...' in front of everything. Like 'I'm noticing I'm having the thought..I'm getting annoyed reading this woman banging on with her psycho-crap'. 'I'm noticing I'm having the thought...I'd like a cup of tea' ,etc.
Sorry I have babbled on here and I'm noticing I was bashing my own agenda here too. But if it helps one person get through today then my time is not wasted. Hope you feel better soon Spin.
You could, if you choose to, go back to the GP now and see what you can take to feel better. It possibly might help. They didn't want you to take stuff (like omeprazole) before the scopes, as it interferes with the scope results and the amounts of acid in our stomach.

Thanks for sharing all that Sadie. I appreciate what you've gone through and what's helped you. In my case, i do think it's worth pursuing dietary factors and certainly at the moment, as I've been on and off the loo the entire day now, the last thing I'm going to do is got back to my normal diet of wholefoods, raw veg, fruit, cheese and fibre as I think the end results would massively dehydrate me!

DCs are used to be eating differently anyway as I've been mostly a vegetarian but they're omnivores who don't like fruit and veg that much - so they're used to me picking at a bit of their meat/fish, to 'model' a relaxed approach to eating (don't want them to take on board my own previous thoughts about believing vegetarianism is the healthiest diet - especially as it hasn't stopped me getting sick!) - whilst eating my plate of veg/salad etc.

I don't recognise myself in what you say about maintaining a safe sanctuary at home etc etc as we used to have loads of people around - but it tailed off as the DCs got older, DC with SN's difficulties became more prominent and thus harder to have other DCs around - and I got much busier at work, needing to generate more income and so having less time to socialise.

I'm pretty good at recognising when thoughts adversely affect my emotions and behaviour and I'm doing all I can not to be ruled by a particular mind set. I'm finding it really helpful to come on here and almost 'blog' about my daily challenges as just 'putting it out there' helps and all of you who respond are also helping me massively, even though we don't know each other in RL.

Vvega, I'm really appreciating your story of recovery as I need to have this as a possible option at present, until I really need to face the fact that my condition is incureable and life changing forever. My body has always looked after me, been strong, got well again. I keep hoping for something that might kick start a normal digestive system again.

What I don't yet understand is why I had some days feeling so well again that I was doing stuff involving heavy manual labour for hours on end and still feeling great. It's as if my underlying body is fine - but my digestive system keeps upsetting everything when it kicks off and like today, I feel weak as a kitten again and demoralised. I'm pretty sure the cough/sore throat is related to the stomach issue as it went away when the stomach improved and is back with a vengeance now my stomach is roiling around again and over-acting.

I'm on day one of my period and wondering if hormones are contributing too - although I know they're not the cause - because usually when I start a period, I'm not as constipated as in the lead up to one (that was the pattern before I got ill). So possibly the added contribution of hormones is affecting my digestive system. However, at the start of the illness, it was worse twice during midcycle - so there may be no link there at all.

I think I'm still going to have to wait till I get the biopsy results before any doctor will suggest any treatment at all. I'd happily pay for more stool sample tests at some point as I'm still not convince there isn't something there that might be detected.

I agree with Vvega that the cough/sore throat thing can be a symptom of GERD, as they now call acid reflux. But I suspect that's probably just another side effect of what is going on, rather than the cause.

In terms of your stomach's reaction, it does sound a lot like what happened to me - I usually eat whole foods and a ton of spices, and all it could tolerate was toast and mashed potato for a bit. My take on it was that my stomach was rubbed raw by something and needed time to heal.

I do appreciate what you're saying about the probiotics, but it is worth considering the digestive enzymes, as they really have helped whatever it was.

Also, v boring and straightforward, but does peppermint tea help at all? It did really settle mine down. I drank only that and water for about a week.

Samson, I've had peppermint tea, once, a few weeks ago now but it hurt to drink anything that's not body temperature and I think I tried it as if I were drinking a normal cuppa. So I could try it again, cooled down.

I am desperate to be able to take anything that might have half a chance of helping - whether probitoics, painkillers, stomach acid reducing meds and even vitamins but 10 weeks on now, the docs have told me to take nothing until I get biopsy results and some kind of diagnosis.

I must admit I'm surprised reading other threads on here where people with similar symptoms have been started straightaway on omeprazole and probiotics and I've had no treatment and left just to be in pain every single day and night for over 10 weeks now.

TBH the only thing stopping me trying probiotics is that I read on the internet that it can make you worse in some cases, depending on which type of probiotic you take and what your underlying problem is. I'm still waiting to hear back from my consultant's PA with any answers to my questions about pain relief and probiotics that I put to the consultant via her - but he's not responded at all.

I keep waiting and hoping and I dread each day, knowing I need to steel myself for more pain and no way out of this. Meanwhile, DCs are more and more worried and withdrawn and despite me trying to put on a cheery face (not always possible), they can see that I'm now getting any better. They're suddenly having to come to terms with having a disabled mum after years of a strong, healthy one.

Should have written NOT getting any better, not 'now getting any better' of course. The effect on my DCs has been by far the worst part of this and for them 10 weeks is even longer than it is for me - the whole of their spring and early summer now.

No one is daring to talk about the supposed activity holiday coming up which I've now paid for in full, during the time I thought I was actually going to get better. Even the thought of preparing for an packing up for the hol feels beyond me at present.

I've got 5 weeks left to get fully better and active again and 10 weeks ago, I'd never in a million year have imagined I could ever end up with an illness that lasted longer than 2 to 3 weeks maximum. Now I'm already thinking about how this will effect the rest of my life....even the little things like never going out for a meal again (not that we ever did that much), never having a cuppa again, never being able to be more than a minute away from a loo, obviously never dating again (not that this has been a priority for years now anyway but....with my symptoms, I'd just not go there at all now).....

....Never eating chocolate again, never returning to my vegetarian diet again....possibly never being able to work to full capacity again (this one is terrifying).....Never being able to plan ahead and know plans can be carried out....never again being able to be the reliable, consistently strong and happy mum that my DCs have always had and still expect and need.

Mustn't think about any of this too much as it then becomes harder to cope with the pain. I have a copy of that poem "Invictus" stuck on the kitchen wall now (the one that ends, "I am the captain of my fate, I am the master of my soul") and I'm trying to emulate the principle of stoicism and self control in the face of pain - but some days are harder than others and it just feels like so so long now to have had to be strong and endure physical pain all the time and all the humiliating symptoms.

Why don't you go back to your GP on Monday?
You weren't allowed have omeprazole before scopes as it intefers with the stomach acidity tests. That's why they wanted you to have nothing at that point. Which was weeks ago.
The consultant who did the scope does not know how much pain you are in and that isn't his 'angle' his angle is diagnosis and treatment of stomach tissue.
Go to the GP. Tell him you need something for the pain. The pain is making your mind work over time on dire scenarios, and those thoughts are making you more anxious and that anxiety is making you focus on your symptoms more. It is a vicious circle.
Please go back to the GP.

You should be fine to try some buscopan. The only contraindication is glaucoma and it's a first line drug for IBS symptoms. The consultant didn't want to prescribe you treatment until there was a clear diagnosis but buscopan is for symptom control and will not do anything to make you worse as it just works to relax bowel spasm. There's also no reason not to have paracetamol. Please don't be in pain and do nothing about it.

OP, this re carbon monoxide poisoning was linked to on another thread and made me think of your sypmtoms - well a number of them at least...

(Sorry to butt in to your thread here..I just can't believe I've come across a thread where there are other people like me; I have a stoma due to Colitis, and have searched for people in my boat xx)

Had a better day yesterday and not so bad so far today - except the ongoing gnawing acidic pain in my upper stomach and feeling I need the loo all the time. I was able to do some 'manual labour' tasks at home and my underlying body feels strong, when the digestive pain isn't manifesting as much - but then as soon as it gets worse, my whole system seems to be adversely affected. On going pain is just exhausting.

Sadie, there's no chance I'd get a GP appointment tomorrow (unless they called it an emergency which it isn't really, compared to people having heart attacks or little children who are v sick). However, I plan to see if I hear back from the consultant by Tuesday and if not, will then try to get to see the GP. This might be a bit of a long wait though, even if I call up on Monday for an appointment.

Snowfire, with buscopan, is the risk of glaucamo higher for older adults like me? I also wear contact lenses and so I don't know if that might increase any risk factors? I think my GP would refuse to prescribe anything or suggest anything until he gets the go ahead from the consultant, however, as this was his feedback last time I saw him weeks ago now. He claimed to know v little about colitis related issues.

Queen, thanks for that link. I see there are some similarities to carbon monoxide poisoning but I'm not getting any of the cognitive symptoms or mood changes and the DCs and family cat are/is OK.

Craftynanny, how do you cope with a stoma bag? You must be one courageous person!

I've started eating gluten free porridge oats with water and nothing major changed after eating them, so I hope they'll provide me with some fibre but nothing too irritating to the stomach. I'd like to find something that would give me some vitamin c but not irritate my stomach. I've had tiny b its of cooked carrot and cauliflower, which contain some Vit C but I daren't try citrus fruits or peppers (which I used to eat almost daily before getting ill).

It's very frustrating that having not drunk alcohol for almost 18 yrs, not been a junk food eater, not eaten much chocolate or any red meat or all those things that are supposed to be unhealthy - and instead had 30+ yrs on a wholefood vegetarian diet - that I've got some awful stomach problems now and others I know, who have had much more unhealthy diets and lifestyles, are still happily knocking back gin a tonics, eating barbecued red meat almost daily, fried foods, junk foods, greasy foods, spicy foods - and are absolutely fine!

I have to say spinstar my bag had saved my life! I was SO poorly this time last year, I was told that whilst my body was in that condition, I wouldn't conceive..had my op on 30th July and fast forward less than a year and I'm 6 months pregnant..I feel blessed to have been 'rescued' by my bag and the operation, it was bloody scary but best decision I made. Found it fairly easy to get used too and I think that's because I was so ready for the op, I'd prepared myself, which always speeds up recovery xxxx

Crafty - many many congratulations on your pregnancy! That's really good news. It puts a very different perspective on your 'bag' - as a major improvement in your life, rather than a burden.

Wow, I am so impressed by your attitude and by you! You sound amazing. Good luck with the rest of your pregnancy. Your baby is fortunate to have such a strong and courageous mum.

ah thank you spinstar..I have to say I wouldn't say I'm a very strong person but thank you! it's one of those things where I pretty much hit rock bottom so the only way is up,so that's how I've treated it,it's given me this amazing experience so I'll be forever greatful! xx

Hi Confused. Thanks for asking. I was told it would be 'two to three weeks' after the scopes, so it'll be 2 weeks tomorrow.

I'm still waiting to hear back from the consultant's PA to clarify when results will be out and whether there's anything at all I can do in the meantime, like take painkillers, probiotics or vitamins. I've offered to pay privately again if this would speed things up but I'm afraid I've still had no reply at all.....

I think I'm now into week 11 of being ill. Today is a better day but I've learned now not to get my hopes up cos this could easily change overnight. Even on better days, I'm in constant pain in my upper guts but it's not been bent-double-in-agony type pain today and the diarrhoea has subsided again.

In some ways, I feel as if the initial acute illness/infection/inflammation is passing and I'm now left with some on going condition that keeps flaring up every few days, outside of my control and possibly unrelated to what I eat. I've added gluten free oats and cooked carrots and a bit of peeled apple to my diet and the last 2 days this hasn't caused any major upheavals - yet the other week, it did seem to set off another bad time. No idea whether it's related or not.

I'm trying now to enjoy the better days and do as much work as I can - without overdoing it - when i can do this and endure the worse days and nights. I'm still kind of shocked that in 21st century Britain, after almost 3 full months being ill and a lot of the time in crippling pain, I remain undiagnosed and untreated, even though I've been willing to pay privately if necessary, which a lot of people couldn't do.

I know they have to go through a process of elimination but it would be helpful if the consultant had sat there on day one suggesting things this might be and getting a good holistic overview, rather than honing in on one specific thing after another.

I have no past relevant medical history. No past history of IBS or stomach problems. Always been healthy and well and rarely visited the GP. No major life events that could trigger an illness. No family history of bowel related disorders. So I was convinced at the start that they'd find some bacterial infection in my stools or be cure that what was going on was a side effect of really bad flu - but nobody's given me any answers at all yet. I know medics daren't do this nowadays as they have to be extra careful with speculation but to be on the receiving end of 3 months of - waiting, suffering, enduring and no treatment, is trying my patience enormously.

Hope I hear something soon and hope it's not bad news.

Oh no! Just found out that there's a 6 week wait for biopsy results, not a 2 to 3 week wait. This means I have 4 more weeks to go, undiagnosed, untreated and by the time the results come out and I then get an appointment with the consultant, we will be away on holiday.

I'd really really wanted to know what was wrong with me before we went and have some kind of way of managing or treating my condition. Now I won't know what's wrong and also the consultant appointment is likely to coincide with the one time we're away in the entire year. If you can't make an NHS appointment, it gets put back sometimes for months. The holiday is now paid for in full and the DCs are hoping I'll be well enough to do some of the things we planned - and now I don't know if I should go at all, if that's exactly the time I get my biopsy results.

I found all this out from emails to the consultant's PA over the last week, 'begging' to get at least some basic medical advice from him about whether to take probiotics, painkillers, acid reduction tablets, vitamins. She keeps telling me she's passed on my emails to him but he's not replied, even though I've said each time that I'm willing to pay privately to see him sooner, if he's uncomfortable about advising me by email, via her.

This is going to mean it'll be nearly 4 months after I got ill, during which time no diagnosis, no pain relief, very restricted diet that must now be depriving me of necessary vitamins like calcium and Vitamin C. I'm still losing weight, although I'm sure that's not a massive issue as I was slightly overweight before - but my body doesn't feel as strong as it always was.

I guess there's nothing at all to be done about getting biopsy results sooner as the labs must be overworked and under resourced, presumably. If anyone has any ideas, lateral thinking - about what I should do next, let me know. If I go to my GP, he'll just say do nothing till you get the results, as he can't know what's advisable or not, given we don't yet know what's wrong with me.

This is a bit of a blow really. Don't suppose anyone knows any way around speeding up biopsy results?

Can you afford a private consultation?

everything takes ages on the nhs ,id go private if you could afford it.
mine is still neverending.
started vomiting blood last night after my ct scan,so been in a&e again today.apparently ive been so sick ,ive ruptured my blood vessels in my oesophagus. so it should heal as long as i dont start throwing up again.
my sugar levels are low ,as is my blood pressure.
stomach pain was so severe i slept in the bathroom on the ice cold floor to cool me down.
ct was normal ,so no nearer to finding cause.
a&e consultant was gob smacked, to find out id been like this for 15 months with no diagnosis.
she was writing to my gi consultant, im beginning to think they dont have a clue what the hell is wrong.

Confused, I can only think the biopsy labs are overstretched.

Klayden, I'd currently give all my savings to go privately if only to get a sooner diagnosis and treatment and I saw the consultant twice first privately in any case. He fielded me into the NHS to save my money (don't have health insurance) and because it was actually going to be quicker to be fast tracked in the NHS than go privately.

However, the biopsy material must be in some kind of queue somewhere and others before me will come first. I don't think going privately will speed up getting those results. However, I've suggested several times recently to the consultant's PA that I'll pay for another private consultation to discuss present management of my condition, whatever my condition might be - but he's probably too busy even privately to get back to me yet.

I could seek another GI consultant privately, even out of region but suspect they won't want to offer an opinion whilst I'm still waiting results and under the 'care' of my current consultant too.

Wfrances, you poor, poor thing. It sounds terrible for you and shocking how long you've waited for a diagnosis too - much longer than me. This is almost my first ever experience of getting medical help - whether NHS or private - and I'm gobsmacked by the delays and the lack of communication with patients. I think that my experience of medical help is making the whole thing even worse, at present.

I'm sure the consultant is incredibly busy - and don't blame anyone specifically - but the whole system just seems to be failing to meet patient needs. I presume they're all overstretched, overworked, underpaid and can't give proper time to their patients but even when you're willing to pay (which most people can't do anyway) - there still seems to be flaws in the system.