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Symptoms of bowel cancer but 'just IBS/infection' (long!)

(29 Posts)
Infinitygirl Sat 16-Apr-16 12:09:08

For the last 2 weeks, I've been bleeding dark clots of blood when I go to the loo for a poo - and in between too, so I now wear an ST full-time. For the last week, I've woken from deep sleep a few times every night in lots of pain, urgently needing the loo and with awful diarrhoea by dawn and am virtually incontinent.

I've got a pain like an infection at the base of my spine and lumbar region, as if I've been kicked by a herd of cows.

I'm currently almost unable to eat and have been in so much pain at times - with upper gastric pain like someone has poured acid into my stomach. I've also got localised pain like someone is twisting a knife into my sides - currently on the right side but was on the left too.

I'm 53 and up until a year ago was really healthy with no prior stomach problems my whole life. Last year, I got really bad influenza and then developed exactly the same symptoms I've described above. However, I was so so ill back then that I thought I was going to die and was fast-tracked in the NHS for a gastroscopy and colonoscopy and lots of blood tests. A faecal calprotectin stool sample was 5 times the normal level - indicating gut inflammation. However, all blood tests and other stool tests were normal as was the gastroscopy and colonoscopy. So they called it 'post viral IBS' and sent me away.

For 9 months, I've taken great care of myself. I got much better but nothing like back to normal and accepted I had post viral IBCS-C as the diarrhoea went away. I ate mostly Low Fodmap foods, stopped my lifelong vegetarian diet and ate chicken and fish, cut out most gluten, all lactose, all caffeine (never drunk alcohol). I exercised a lot more, rested and relaxed and have managed. I've never been out of pain - especially during the night when I'm wakened by abdominal cramping. But I've coped and felt a new lease of life, having feared I might be diagnosed with cancer - so I felt reprieved.

Out of the blue, it's all happening again. I've recently enjoyed a holiday, have exercised even more, have felt happy and relaxed - and in the midst of this particularly good time, once again I'm in agony and with all those scary symptoms.

Two days ago, I paid to see the gastro consultant privately, rather than wait in the NHS. He said no way can I have anything badly wrong as all the tests came back clear last year (he wasn't bothered last year about the raised faecal calprotectin). He says it must just be a normal stomach infection plus piles plus IBS. So he sent me away and told me to 'eat a bland diet' and that's it.

Last year, the symptoms took 5 months to get any better at all. Have I really got to go through all this again? I've never been given any pain killers for the stomach acid feeling and didn't want any for IBS cramping as I can cope with simple cramps. But this current 'infection' feels way beyond any 'normal' tummy bug. It feels as if I have some kind of inflammatory flare up - but that's impossible, as the consultant denies I have anything like that.

Are there any over-the-counter drugs I can buy to deal with the searing pain in my guts but that won't be the 'wrong' kind of thing for my kind of illness? I'm worried that anti-spasmodics will give me worse constipation or won't actually be the right thing anyway if I've got an infection.

Have other people had this kind of thing with IBS when you get an additional stomach infection too? Should I eat? Should I not eat? I'm currently picking at bits of chicken and prawns but trying to avoid all carbs. However, I think eating is making it the pain worse. The diarrhoea is easing off however.

Does this illness match anyone else's? Could it somehow be related to perimenopausal hormonal changes - as my periods are now more erratic? If it gets better in another week, then I can cope for a bit longer - but if it's going to take 5 months again, how the heck am i going to manage work and DCs (as a solo parent)? Why oh why would exactly the same symptoms recur about one year after last time when I've done nothing to provoke this and am otherwise v healthy?

FellOutOfBedTwice Sat 16-Apr-16 12:19:58

I don't have insight into your exact symptoms but about 12 years ago when I was only 19 I had a very bad infection in my gut that hospitalised me and have had IBS ever since. Many of the symptoms you describe were there in the months that followed (the acid, the blood clots, the cramps) the initial infection and it's never entirely gone. Some foods and situations exacerbate it and over the years I've learnt (ish) what helps and what doesn't.

Last year in late summer I got gastroenteritis and developed many of the symptoms badly again. Once again I was hospitalised, tested and scanned but they concluded that it was just that my digestive system is weakened now and vulnerable. Proton pump inhibitors like omaprazole help my acid. My experience is that you have to be persistant with your GP and ask for referrals etc.

Minime85 Sat 16-Apr-16 12:36:24

I agree you need to have more tests and a second opinion about the present symptoms I have had IBS diagnosed for over 15 years now. If I get a stomach bug it does make it worse. Buscopoan is really good for short term settling of cramps. Also when I was particularly bad I started acupuncture and it transformed my life. I keep it under control now through diet and occasional acupuncture. I think you might also want to try a good quality probiotic. Not one with dairy products but pure. I can recommend symprove. You need to take it for at least three months but it does work to restore good guy bacteria

YoungGirlGrowingOld Sat 16-Apr-16 12:49:33

I have experience of colon cancer at a very young age so possibly overreacting BUT in your position I would want another colonoscopy. Very unlikely to reveal anything sinister after only a year but there are diagnoses other than IBS or cancer and you should at least be getting relief from symptoms. Are you taking an anti-spasmodic?

You're not "too young" to be investigated for colon cancer btw. DH has a patient in his teens sad

I understand that IBS is a diagnosis of last resort i.e. It should only be given once everything else (Crohns, diverticulitis, polyps, piles, etc) has been ruled out. Good luck flowers

Infinitygirl Sat 16-Apr-16 13:12:57

It helps to hear that IBS be exacerbated by a stomach bug as I really need to know that's all it is nothing worse, although i still need to cope with the symptoms.

I've not been given an antispasmodic as the consultant suggested mebeverine but I heard it could make constipation worse and that has been the worst issue for the last 9 months.

No way will my consultant do further testing and as he's the local top doc, I doubt any other consultant would take me on as I'm 'his' patient.

The consultant is also totally sure that there's no point taking probiotics as he says there's no evidence they work.

I feel SO ill today and still don't know if eating is making it all worse better to ea keep my strength up.

I've kept to exactly the same diet/foods for months and changed nothing and been OK enough. So I can't see any foods triggering this. I've eaten similarly to my DCs and they're not ill so not sure it's a normal stomach bug.

Minime85 Sat 16-Apr-16 22:05:20

My GP told me to take a probiotic and it has to be worth a try if things are that bad? I took one for over a year and now don't need to because it has restored it. Buscopan I think is an anti spasmodic and does work. I don't like mebervine as I found it made me loose all my appetite.

Minime85 Sat 16-Apr-16 22:10:36

And I couldn't function eating and leaving the house before the probiotic

MuddhaOfSuburbia Sat 16-Apr-16 22:16:07

do you know, did they look for microscopic colitis when they did the colonoscopy?

I have symptoms v similar to yours, and that's what I've got

they can only find it if they take biopsies (? I think) -it's not visible when they do the investigation, like Crohns or uc would be

StarUtopia Sat 16-Apr-16 22:25:03

I've been taking a good probiotic and that's been helping.

I'm in a similar position. Well, in the case of feeling fobbed off. I suffered bowel damage as a result of giving birth 3 years ago, and I'm due to have surgery this year. However, my issues have been getting worse, and the docs were just writing it off as a result of my muscle damage. It's now at the point where some days I can't leave the house.

I've finally found a new GP who is actually listening to me and doing some more testing to check that something else isn't also amiss. As I said to him, if I had only gone to the gp with 'change in bowel habits' people would listen. The minute anyone looks at my medical notes, it just gets waved away as being part of the same problem.

I'm currently keeping a detailing food diary as I'm convinced there must be a link there. I also have the crippling pains.

However, I would say I think the dark poo that's needing you to wear a ST needs investigating asap. Honestly. i would be seeking a second opinion although I can see you're a big stuck how you would go about that. I have bleeding from time to time, but it's fresh red blood and from what I can sort of see (I'm too fat to have a proper look) it does look like it's coming from a big cut in a pile. Dark blood implies it's coming from much higher up. I would have another colonoscopy done...going right up high...some polyps maybe?

Thinking of you though. It's literally crap (!) isn't it. (trying to keep everyone smiling!!! It really is a hidden illness)

Simmi1 Sun 17-Apr-16 03:42:09

I again don't have the exact symptoms but am also experiencing horrible IBS symptoms since the birth of my second child 7 months ago. My tests also come back clear but I know that this is not normal for me! I have heard people get good results from alternative (naturopathy, functional medicine) for these kind of problems so am investigating this route for myself. I have had gassy cramps, constipation and terrible diarrhoea- including at night as you describe OP. I also have this almost constant uncomfortable feeling - like I still need to go but can't. It's been 7 months of hell so can completely sympathise 😢

PollyPerky Sun 17-Apr-16 16:10:54

OP I don't have any real advice, just sympathy.flowers
However, there is something to consider: you can see any consultant in the UK ( privately) so if you have the funds, why not get a 2nd opinion? The fact you have seen someone locally already is not relevant.
I know of Peter Irving who is an expert if not THE expert in the UK on IBS- he works at Guys and St Thomas' London NHS(and he 'brought' the Fodmap to the UK) but he also works at London Digestive Health Harley St www.londondigestivehealth.co.uk/ if that is an option for you. maybe even just a 1st appt as you have had lots of tests done already.

MuddhaOfSuburbia Wed 20-Apr-16 08:29:14

Hi OP

How're you getting on

Also am I right but did you have a long thread last year, maybe with a different name? Your style and symptoms sound v familiar!

Anyway hope you're seeing some improvement

Infinitygirl Sat 23-Apr-16 17:37:49

Muddha -I'm one and the same as he poster last year, yes. This is like a mini relapse - with exactly the same feelings and symptoms. The only difference is that this time I've had lots and lots of bleeding, which I never got last year.

My consultant told me probiotics don't work but also I'd read that some can actually make things worse, as they can introduce the wrong bacteria, given each case is individual. I've been afraid to try any therefore. Is there one that most people find DOES work and doesn't make it worse? What would you recommend?

In the last 2 to 3 days, I'm no longer bleeding at the moment and the diarrhoea has stopped and the pain is less. But I keep feeling a strange, sickly, ill, faint feeling some time after I've eaten and don't feel myself. Last time, I had that for 5 months but this time it seems to be at that stage more quickly.

To me it really feels like a recurrent inflammatory condition as I also have this very sore pain at the base of my spine at the same time as the abdominal pain and a feeling of general 'malaise'.

Last year, I think they did do biopsies with the colonoscopy and gastroscopy and all was fine but no one mentioned microscopic colitis. The consultant had told me at the time of the colonoscopy and gastroscopy (which I had without sedation so I could be fully aware of what he was seeing and saying) that he couldn't see everything properly and the laxative hadn't worked but then he later denied this and said he could see enough. I've always wondered whether he missed something.

Polly I've thought about getting a second opinion but that website you linked to says you have to have a referral and I don't think my GP or the other consultant would agree. I'd rather not inform them but don't think the new clinic would agree. Most of all I'd like to talk to someone who would listen to the whole context, rather than jumping to conclusions that this is just post viral IBS and I've coincidentally had another virus.

I've had a really strong 'cast iron' stomach fr 50 years with no IBS or any problems. So it's weird to get this suddenly in my 50s.

Across 50+ years, I've had tummy bugs and not a single one of them has ever presented or felt like this ever. I've also had amoebic dysentry 30+ yrs ago and cryptospiridium 8 years ago and made a total recovery from both and neither was as bad this.

PollyPerky Sat 23-Apr-16 18:19:25

If you read the website link, it says this half way down the referrals page

Under some circumstances it may be possible for you to be seen without a referral letter.

IME many consultants are happy to see people without a referral when seeing them privately.

You should call Peter Irving's secretary and ask, and explain why you don't want to involve your GP. The 'other' consultant can't prohibit you seeing another consultant- that's just not how it works. Even in the NHS it is quite justified to ask for a 2nd opinion from another consultant. If you are paying, you have choice to see anyone, anywhere.

Simmi1 Sun 24-Apr-16 03:09:15

Hi OP, I've been taking probiotics for last few months but don't think they helped me. I also had no tummy problems in almost 40yrs and now I'm having problems every day. It's really miserable. Hope you find out what's causing your symptoms - it's so frustrating 😢

peggyundercrackers Sun 24-Apr-16 05:03:50

OP ask for a small inestine bacterial overgrowth test. I would also ask for an antibiotic called metronidazole, it helped my friend when they had symptoms similar to you - it is used to treat bacteria and infection in the gut.

Infinitygirl Wed 27-Apr-16 20:09:34

PollyPerky, thanks for clarifying. Do you have personal experience/knowledge of Peter Irving (answer off list if you prefer)?

Peggy, how do they test for Small Intestine Bacterial overgrowth? According to the consultant, everything necessary was done last year and nothing found but no one mentioned SIB. Consultant seems sure that no further tests are needed and everything now is just IBS.

Is IBS pain caused by a) irreversible bacterial changes in the guts or b) change in pain receptors in the guts - ie we feel pain where non sufferers feel nothing at all, when food is digested (in which case why and can this never be resolved) c) spasming gut - or all three of these?

A few more questions for IBS sufferers, as my consultant doesn't every give me any management tips:

If you're on a LowFodmap diet, how do we get the necessary vitamins and minerals normally found in other fruit and veg we can no longer eat? Low Fodmap diet - which is v low fibre/low fruit and veg. - is the opposite of the healthy high fibre/lots of fruit and veg recommended everywhere to ward off bowel cancer and keep people healthy?

Lastly, can a faecal transplant (however unpleasant this sounds) cure IBS? Clutching at straws here really.

Can someone tell me the best probiotic to take and give me some further info. about why some doctors say that a) probiotics don't work and b) some make you worse as they introduce new bacteria which might be of the wrong kind for your individual case?

Feefeefs Wed 27-Apr-16 20:56:17

I think going to see this Peter Irving is not a bad idea I would be surprised though if your GP or consultant didn't agree to second opinion it happens regularly where I work.

Painkillers are terrible for upper gastrointestinal issues and tend to make everything much worse stick away from anything opiate in particular as they can even cause IBS type symptoms. If it's an acid type pain you could try over the counter omeprazole. If you are taking any codeine/opiates/ibuprofen or othe NSAID try and stop. Low dose anti-depressants can be very effective for IBS type pain.

Small bowel overgrowth cause very different symptoms then what you are describing and is usually treated with cyclical antibiotics or nothing at all.

IBS is a group of functional bowel disorders with a couple of different theories of cause exact cause usually not known, it is not inflammatory. It starts most often in people in their 40s or 50s. There is no indication that it will cause any ill effects other than the discomfort it causes.

Fecal cal protection is very none specific and 5 times the normal number is not actually that high compared with what you might see in inflammatory bowel disease.

There is no good evidence that probiotics improve IBS type symptoms which is probably why your consultant said that. If you have an active infection do not take them but it you are recovered you could try them, you need to take an appropriate dose every day for 8 weeks to see a difference. VSL#3 is the only one with much evidence but I'm not sure if you can get without prescription. Feacal transplant not indicated in IBS as no evidence.

I would go back to the introductory phase of your FODMAPS diet and see how things go. There will be no quick fix.

Other than this are you experiencing any major life stresses? It can make IBS much worse. Cognitive behavioural therapy has been shown to be very effective in managing symptoms

Feefeefs Wed 27-Apr-16 21:00:39

FODMAPS has not been around long enough to see if it causes any ill effects but is extremely unlikely. Until your symptoms are somewhat resolved avoid any extra vitamin or mineral supplements as most cause more trouble than they are worth. If you eat a variety from your tolerated fruit and vegetables this shouldn't be an issue.

High fibre diets are seen as protective against cancer but lower fibre diets do not cause cancer there is not a direct relationship that way. Include fibre from sources you tolerate.

Feefeefs Wed 27-Apr-16 21:04:13

I work in healthcare and also have IBS mostly IBS-D, mostly do my own kind of modified FODMAPS although newly pregnant and has gone of the window which it making the whole morning sickness issue worse!!

I found cognitive behavioural therapy the most useful thing although it took me three years and lots of tests to be willing to do it! I also used amiltryptiline low dose and found it excellent.

Simmi1 Wed 27-Apr-16 23:20:23

Hi OP

I'm in Australia also suffering severe IBS symptoms. Naturopaths or functional doctors here will do detailed stool analysis tests which go beyond what regular doctors do. Mine showed I had no bifidobacterium (a good bacteria) which surprised me as I had been taking probiotics for several months?! I also had loads of candida. I'm now on a special specific treatment plan. Low fod map did nothing for me but I agree that there is a wide variety of allowed fruit and veg

Simmi1 Thu 28-Apr-16 03:18:21

Also the only thing that has helped my symptoms and given me normal bowel movements is Acacia Senegal Fibre supplement - heather's tummy fibre. Google it. I tried Fybogel before but it didn't help whereas this one has. It may be worth a try?

Infinitygirl Fri 29-Apr-16 14:35:33

Feefeefs, many thanks. You've virtually answered all the questions I might have wanted to ask another consultant. I had no idea that IBS was most often diagnosed in people in their 40s and 50s, as I thought it was one of those conditions that medics diagnosed in young, anxious women in their twenties. I was quite frankly amazed to get that diagnosis last year, as I'm so far from the usuall 'profile' of a sufferer, never having had any digestive issues or suffered from stress/anxiety at all my whole life. My illness last year was nothing like anything I'd ever experienced before and lasted 5 months of acute symptoms.

I've not taken a single painkiller since my diagnosis as I thought at first that it had been my use of ibuprofen that might have caused the stomach problems. I'd taken them regularly and appropriately - but across a number of days and along with paracetemol, in order to keep going at work when I came back after the worst proper influenza I'd ever had. However, I'd always survived fine when I'd had proper flu once or twice before in my life and used ibuprofen then.

Anyway, I've not even taken paracetomol or any medication of any kind since this all kicked off last year and not been prescribed anything for the pain - except the suggestion of mebeverin which I resisted, expecting it'd make the constipation worse.

It's also really helpful to hear about faecal calprotectin levels and that mine at 5 times the normal level isn't anything to worry about. The GP was worried but the consultant thought nothing of it, yet didn't explain why and everything I saw on the internet suggested that it was the most diagnostic marker of IBD rather than IBS.

Regarding any major life stresses - nothing of note and I've had much more stressful times and never been ill. I actually kept a written record of my stress levels for about 7 months since I got ill and found no correlation at all between times when I've been a bit more stressed and IBS symptoms. The recent flare up - if that's what it's been - happened one week into a really relaxing and physically active, happy holiday with my DCs when we were all feeling really healthy and well and having a great time.

In many ways - except for enduring physical pain, I've been if anything happier sine the illness last year, as it's been like a new lease of life, being told that I've not got cancer or a life threatening illness. I've relished the days when there's been less pain and appreciated life so much more, making a special point of spending even more quality time with my DCs and doing more fun stuff.

It was a total shock to get those recent symptoms, as I'd been feeling so well, so in control of managing the pain of IBS using various strategies. It was so scary to then find myself bleeding dark clots of blood and then the sudden waking in the middle of deep sleep, with explosive diarrhoea - exactly like last year.

I guess that I must have picked up a bug from somewhere but the IBS then led to out of the ordinary symptoms. But there was no warning of feeling ill, nothing unusual I'd eaten and the DCs were fine and had eaten the same as I had. So it's all been very weird.

Simmi - it's interesting to hear how they approach these things in Australia. Sounds v different to the UK. I do wish I could have some more stool sample tests and talk intelligently with a consultant, without them acting as if I'm one of 'those' patients - ie middle-aged neurotic female.

The irony is that because of my social and professional world, I know quite a lot of personal stuff about my consultant and there are 'questionable' aspects to him and his life which have made it even harder for me to tolerate his rather patronising attitude. If I question his views and decisions, he seems to interpret this as a sign of neurotic anxiety and I should really just 'bow deferentially before the great white male medic' as an inferior female!

Fee, can I just therefore say again how helpful your medical knowledge has been to me today. I've learned more by far from you and MN than a 10 minute, £200 consultation with the consultant!

PollyPerky Fri 29-Apr-16 15:23:10

OP Sorry- have just seen your post- thought the thread was dead now. I'll PM you.

Feefeefs Fri 29-Apr-16 20:59:24

You are very welcome islandgirl I know the way you can be treated with IBS and how it can make you feel, and how health professionals can treat you. Part of the patronising attitude I think comes from how difficult the condition it to treat! I think the instinct there is too help but coming across something they can't do lots about frustrates them too!

Just as one last thing, be careful regarding supplements and discuss with your doctor or a dietitian if unsure, there are always a lot of people out there trying to make money from people having a difficult time. If something worked we would use it!! I work in Scotland too with a lot less commissioning type or postcode restrictions we would use it!! All we have referred people to consultants in other areas of the country via NHS on several occasions for second opinion if you feel strongly that would help I see no reason not to push it.

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