Bowel problems - Please help

[Jiraffa]

Hello, I've been suffering with bowel problems for ages & am starting to get really fed up with it all. I would be really grateful if anyone has any advice or ideas of what it could be.

It started at the beginning of April, I had diarrhoea (which was just like water) every day, several times a day. This lasted for six weeks, I felt very weak and ill and lost quite a lot of weight. (I am 5ft11 and did weigh about 10st7, I am now 9st3).

I went to my GP several times, they sent me for blood tests and a stool sample. The stool sample came back clear, the blood tests showed that my white blood cell count was too high.

The GP said I needed an urgent referral to a gastroenterologist and she would fax the referral and I would hear in about a week. (This was at the beginning of May).

I didn't hear anything and have phoned and been back to the GP many times but the hospital is apparently so busy and they have so many people waiting that they can't give me an appointment at the moment and can't say when it will be. I have tried the nhs choose and book system and no other hospitals in the area (I am in London) have any appointments until the end of August, when I am on holiday anyway.

The constant diarrhoea eventually stopped, however I now have days when I am so bloated and constipated & I just can't go, some days I have to run to the loo and it's very explosive and others where I have diarrhoea and am on the loo all day. At the moment I am so bloated I feel like I have a balloon in my stomach.

I have also been getting one or two migraines a week, indigestion, reflux, hiccups several times a day, numb fingertips and palpitations. My periods have been lasting much longer and are much heavier than they used to be. (I'm 37) I have also felt faint a few times and had to sit down quickly so I don't pass out. I feel tearful and really down all the time, I'm normally a happy person. DS (10) said to me yesterday that I used to be fun before I was ill but I'm not any more!

I have made another appointment to see the GP later today, someone suggested I should ask for a blood test for coeliac disease?

I'm sorry this is so long and boring, well done if you are still reading! I would be very grateful if anyone can help. Thank you.

Jirrafa, it sounds like you are really suffering there.

Hopefully your GP will be able to speed up your referral, are they aware of your weight loss? A blood test for Coeliac disease does sound like a good idea.

I have had salmonella before and when I became dehydrated, I got migraines, numbness in my fingers and palpitations.

In the last 18 months I have started eating Activia yoghurt twice a day, and it really does help with bloating, I know when I have missed out eating them!

Hope your son soon has his happy Mum back soon.

Thank you for replying. Yes the GP is aware of the weight loss.

I will ask for the test for Coeliac disease and will also give the Activia a try. Thanks

Can you remember if you were taking antibiotics in the few months before you became ill?

If so it could be c difficile, which is notoriously easy to miss on a single sample. They ought to ask for three to rule it out. But unlikely unless you've been on antibiotics, or work in a nursing home or hospital.

You should be being referred much, much sooner and I would urge you to contact your local PALS (patient advice and liaison service) which might help you get through the red tape a bit quicker.

Your other symptoms could be simply caused by the dehydration as BETS said, and stress from being so poorly.

Let us know how you get on. I wish there was more I could do, it sounds miserable.

No I haven't had antibiotics for years, can't remember the last time.

That's a good idea about contacting PALS, will try to contact them tomorrow to see if they can help, thanks.

Does anyone have any idea what it could be? IBS, Coeliac, Crohns etc

Well from what you describe, it sounds like an infection, which eventually your body coped with but it's left you very depleted in regards to your bowel 'flora' which basically is the bacteria which help digest your food, form a big part of your immune system etc etc.

You could do with replacing some of these. You might be wise to go to a really good health food shop (not holland and Barrett, they are just a chain - an independant one where they know their stuff) and get some ideas from them about repopulating your gut.

Proper acidophilus will help, or a mixture of good bacteria - activia is nice but it isn't strong enough to really get there where it's needed.

I think you will feel better with some stuff like this, whether or not my guess is right - the constant diarrhoea has stopped which shows your body has fought whatever it was. That's really good.

Please do pursue the referral as hard as you can, in the meantime keep a diary of what you eat and your gut symptoms. This might help the consultant when you get to see them.

Take care and chin up - I had an infection a few years ago which took a while to go, it was very debilitating and upsetting. But you will get over it in time x

Btw I think IBS is a pretty broad term for any sort of gut problem the doctors can't explain - and it can often be treated really effectively using proper, natural stuff like acidophilus etc.

That's really interesting, thank you for your advice. Will keep on trying with referral.

Agree about you pressing for earlier appointment ,though sorry can't advise how .
Make appointment with GP and really get message across re your symptoms ?
I'm a bit obsessed at moment about elctrolytes being out of balance ( elderly mother with low sodium so have been googling ) - try Dioralyte sachets ( any chemist ) .
Wouldn't do you any harm...
Although ,sudden thought ,might temporarily hide problem and give false blood test readings if you ever were lucky enough to get seen by a proffesional.

Agree with A&E - also if your periods have changed in character a gynae referal is necessary, ovarian problems often get mistaken as IBS, do go back to your GP and underline period problems. You need to get this ruled out. Have you been checked for anemia given the heavy periods? If you are iron deficient, don't take normal supplements while your guts are in this state, spatone is a good, gentle alternative.

As for Activia...noooooo...it has sugar and thickeners in it, not to mention bifidus. Although bifidus is a good bacteria, it can easily over populate in damaged bowels. Try a probiotic from Quest called Tumbiotix. Very little yoghurt bought in supermarkets is properly fermented as they accelerate it too quickly. Have a read about SCD yoghurt, by googling SCD and Elaine Gotschall.

Try to cut out all sugar from your diet, bad bacteria loves to breed on sugar.

If you can afford it, get a comprehensive stool test analysis from a company called Genova Diagnostics (google the UK site). You can also do coeliac tests through them. Unlikely to be coeliac if it has come on so late and acutely in life but no harm in ruling it out.

Had you been abroad anywhere just prior to the onset of this? Just in case you picked up anything that might have been missed, although a stool sample should have shown up any intestinal parasites such as amoebic dysentery, for example.

The raised WBC count indicates either infection or inflammation - could be inflammatory bowel disease or some kind of food poisoning bug - the extreme watery diarrhoea you started with would indicate the latter. The weight loss is likely because you weren't digesting your food properly as it was all running through you.

You are likely to be anaemic if you are having such heavy periods - and low haemoglobin could cause dizziness, faintness, breathlessness.

Your digestive system is up shit creek, if you'll pardon the pun - you aren't getting your nutrients because you're not absorbing properly. This can lead to even worse digestion - for example, you need sufficient zinc in your diet to be able to make stomach acid (HCl) - too little stomach acid can also cause reflux, as the increase in pH can cause the cardiac sphincter of the stomach (the top one) to be less effective, thus allowing backflow of the acid. Too little acid also means that you don't digest proteins properly - which can further exacerbate nutrient depletion and also digestive disturbance.

Your GP really needs to hurry this referral along so that it can be sorted out asap.

Thank you all for your replies. I saw the GP again & he was pretty useless. I told him how low I felt & about the heavy periods, palpitations, etc (I actually sat there and cried ) but he just said it's out of his hands and I should chase the hospital again. I have done this and they still say they have no appointments. I feel really let down tbh, I'm hardly ever ill & the one time I need some help they're just not interested!

Yesterday I made an appointment to see a gastroenterologist privately on Wednesday morning. Having read what you have said though do you think I should still go to A&E before then? DH is urging me to go, not sure what to do.

Oh & GP said I was tested for Coeliacs but it came back clear.

Also, I have been using Dioralyte when I have diarrhoea & hadn't been abroad anywhere prior to this all starting.

no, go and see your gastroenterologist as you have an appt.

Coeliac tests are notoriously unreliable, btw - but tbh I don't think that is your problem - onset was too sudden. I still think you have infection/inflammation issues.

Someone needs to have a look and see what's toing on in your abdomen - and soon.

ACtually, if you can be bothered to go to A&E tomorrow, do that too - if they refer you to the NHS gastro, it might take forever anyway - so keep the appt with the private bloke on Weds but you'll hopefully have a few more results to take with you, which should reduce your costs, if you still need to go to that appt after being seen at A&E.

Thank you, yes I might go tomorrow.

Jiraffa ,good luck at A&E ,let us know how it goes ..
Can I highjack and ask thumbwitch what happens to digestion if someone is longterm on omeprazole ( sp ? ).
It's a proton pum inhibitor and I thought that meant no acid was produced ?
( apologies to Jiraffa )

Jiraffa - seeing a gastroenterologist is a great idea ... I had problems for ages and put it off, now wishing I hadn't! If you want to avoid private apt, then you could phone up the secretary of Gastro dept at NHS hospitals and ask to be put on their cancellation lists - so may get an apt earlier. The NHS has to offer you an apt within, I think, 18weeks, but going to A+E is a good tip. Also could you try a different gp to see if they can chase it up?

I had a coeliac test 4yrs ago and the dr said it was negative, I asked for a print out of results - and yes it was negative, but due to me having no IgA which the gp said was not an issue - well my now Immunologist has educated him otherwise (explains going deaf as a child etc), so worth asking gp for print out of result to take with you if go to hospital this week - not saying you have no IgA but they can make mistakes sadly.

GPs are not generally well qualified in immunology or nutrition issues - or many other specialities, if it comes to that. They don't have the time, although some might have special interests.

violetqueen - sorry not to get back to you on your omeprazole question. I don't know the answer off the top of my head but this link might give you some cause for concern. This link suggests that the ill effects are reduced by taking it on alternate days rather than every day.
PPIs do not completely stop the production of stomach acid, just like statins do not completely stop the production of cholesterol - they just reduce them. One of the biggest problem with PPIs and indeed proprietary antacids is that they can be prescribed/taken erroneously - i.e. they are meant to be used for excess stomach acid, but as insufficient stomach acid can also cause GERD (gastro-esophageal reflux disease) (should be GORD in the UK), unless a test is done to see what the stomach pH actually is, prescribing antacids could be counter-productive.

The first link I gave you said that "No evidence clearly links PPIs to gastric cancer or carcinoid, enteric infections, or significant nutrient malabsorption." That is a good way of saying that they haven't actually proven that PPIs can do those things, but they can't discount it either. So if it is you who is on longterm omeprazole, you might want to have a chat to your doc and see if there are other ways of managing your situation.

My Dad was put on Ranitidine for his reflux - he aged visibly on it. His eyes went all watery, a sign I associate with generally going downhill (having observed it in a few elderly people, including my own grandparents, for about 1y prior to them dying). Anyway - I persuaded him to come off it and to try changing the way he ate to help control the reflux, which did work. His eyes stopped being watery and he started to look more like himself again. He has the Ranitidine on standby in case he has a bad attack - but he won't ever take it daily again. Ranitidine is not a PPI but the outcome of the treatment is very similar to PPIs.

whoops - posted too soon - if you want any more info, I'll see if I can help out. But if you are experiencing side effects from omeprazole, do consider asking your GP for alternative management methods (or if it's not you, whoever is on it).

Thanks thumbwitch .
I am raising query on behalf of 90 year old mum .
Recent hospitalisation for surgery has shown that she has low sodium levels .
Initially hosp withdrew her duieretics ,( sorry re sp ) but as that had no effect have now also withdrawn candestartan ( for BP ) and were going to halve her omeprezole .
After I reminded them of her history of gastric bleeding they felt safer to switch to ranitidine .
I do believe them when they say very tricky/balancing act to get it right .
Though ,mmm - if they know it's so tricky etc then I feel they should be less casual in their initial prescribing and monitor effects ( especially on elderly ) more .
If you have any more thoughts ,links and have the time would love to read .
Wonder how Jiraffa is ?

Hello - went to A&E yesterday. The doctor I saw was very sympathetic and really listened to what I was saying, which is more than my own GP did.

She said she couldn't refer me from there as she didn't think it was immediately urgent or life threatening but agreed I did need to see a gastroenterologist asap & will probably need a colonoscopy. She is faxing my GP to get them to chase the referral again and is also asking them to refer me for an ECG (wonder how long that will take).

She wasn't too concerned about my heavy periods as she said that is just a symptom of being unwell and if the bowel problem is sorted out everything else should go back to normal?

Will keep the private appointment on Wednesday and see what happens from there.

Thanks everyone for your help.

Well done for going to A& E - you have to be guided by their response .
If A& E think you need to see gastroenterologist asap - then you need to follow this up .
Phone GP ,ask if they've had fax and ask specific questions about when you will be seen by /at ECG .
I promise you ,you need to be pro active here - it's such a terrible truth ,but those who shout loudest ...get attended to .
You honestly need to be attended to ,you have to help the system by pestering them.
This has been going on for far too long - you really need to get it sorted.
You shouldn't need to fight for it - but you must .

Thanks Violetqueen, I agree with what you say about those who shout the loudest, it's true, it just doesn't come that naturally to me.

Have just heard from GP surgery who say they have the fax and have managed to get me a gastro appointment at a different hospital that wasn't on the check and book list, for Wednesday morning! The GP also wants to see me & I have made an appt for Wed afternoon.

I have cancelled the private appt which was for the same time as hopefully it will all now be sorted out.

Looks like going to A&E has pushed them into action so thank you to everyone that suggested it. Will let you know how I get on.

That is great Jiraffa - its amazing what Gp's can do when they have to sometimes. At my hospital the Gastro orders the test and then the Endoscopy suite is separate and does the tests - I only had to wait 2 weeks for each test ordered (Endoscopy and colonoscopy). My advice would be if you work, ask for a day for colonoscopy when someone else can help out the day before, or if work do it on a Monday - as the 2 days before a light diet has to be eaten and then the day before strong laxatives used and restricted food adn fluids - I couldn't look after children or work the day before I had it!