Help: I was diagnosed with IBS 2yrs ago. However... - IBS Network

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Cquinn1 profile image
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I was diagnosed with IBS 2yrs ago. However I do not believe I have this as my stomach problems occur every single day and do not react/respond to variations in food. I have diahrea every day (I used to go once every day or two but can now sometimes go 3 times before I leave for work) and it ranges from a soft whip to coloured water which sounds like I'm weeing. I am now atbyhe point where I get stomach pain every time I eat and can only have 2 small meals a day. However even though I'm eating a lot less I am not losing any weight and if anything have put weight on. I have had various blood tests over the years including thyroid and they are all apparently normal. I am at my wits end as I have stomach ache, bloating, heart burn, nausea and exhaustion every single day. The GP keeps telling me I have to figure it out myself but I don't know how. Has anyone else been through this. (I also saw a specialist a year ago who said my symptoms did not sound like ibs)

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Cquinn1
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Kentaro profile image
Kentaro

It sounds like all of your problems start in your stomach.

Have you had gastroscopy?

You could also try the baking soda test for low stomach acid. It's easy and cheap.

Cquinn1 profile image
Cquinn1 in reply to Kentaro

I have only had a colonoscopy and ultrasound along with numerous blood tests. The doctors are refusing to do any more test as nothing is showing up yet although I have never actually been told what blood tests they have done or what the results where. I am currently in the process of getting a copy of my records. I have never heard of the baking soda test and will look into it. Thank you for taking the time to reply

Kentaro profile image
Kentaro in reply to Cquinn1

It's very good that you ask for the copies. I do the same all the time.

If they expect you to diagnose yourself then you are going to need those records.

As others said you have to insist for further tests even if you have to change doctor.

And if I were you then I would start the investigation in my stomach.

Cquinn1 profile image
Cquinn1 in reply to Kentaro

It is my experience that they only look at each thing individually and not the whole picture. A test may come back just within range but with other symptoms could still indicate a problem. For example I am very low in vitamin d, I took strong doses of liquid prescribed by the doctors for 8 weeks then had a blood test. It came back not as normal but satisfactory. Considering I had been taking supplements it should have been much higher but I haven't heard from the doctor regarding it. They have just assumed it is within range without looking at the whole situation. You just can't trust gp's.

Kentaro profile image
Kentaro in reply to Cquinn1

True.

Although I think most of us has vitamin d deficiency in UK. :)

pajohns profile image
pajohns

You need to go back and get a referral to a gastroenterologist. You certainly need more tests doing. Have you had these symptoms constantly for two years? Do they come and go at all?

I have long periods of time with similar symptoms to you, a couple of months at a time then I get gaps where things calm down. Only just been diagnosed ibs but I've had a fair bit of investigation done.

Quite strange that you're putting on weight with these symptoms. I've lost a lot of weight with mine.

Even if your problem is ibs the dr needs to do something other than say 'figure it out yourself'. You need to get a referral to the gastroenterologist team who will look into it more and help you figure it out. Have you tried probiotics? Cutting out gluten or dairy? Have you had a blood test for coeliac disease? Go back to your gp (perhaps a different dr) and ask some more questions. Lots on here you could read up on and then as about.

All the best.

Cquinn1 profile image
Cquinn1 in reply to pajohns

The main reason the doctors are refusing to help any further is because I am not losing weight despite still suffering all the symptoms everyday. I have now got to the point where I have very little time when I do not have symptoms

pajohns profile image
pajohns

You need to see someone else. They worry more when you loose weight but you're not getting better so they need to help you some more. It properly is ibs but you still clearly need some help to manage it. Have you tried anything yourself?

Eastbourne11 profile image
Eastbourne11

Hi, i would INSIST on seeing a specialist of standing, look them up on " Dr Foster". Do not let your GP get away with " you will have to sort it out yourself". Too often medical practioners take the easy way out. Also have you read some of the items about excess acid in the stomach? Good luck.

Cquinn1 profile image
Cquinn1 in reply to Eastbourne11

I've kept a food diary which showed no correlation between symptoms and food, peppermint tablets and stomache acid tablets from Holland and Barrett. I saw a specialist which I think might have been a gastrologist who also told me that because I'm not losing weight I can't have any serious issues with my stomach. I feel really ill and just don't know where to turn or what to do. The only thing I have tested positive for is very low vitamin d.

A_IBS profile image
A_IBS

Have you looked into SIBO? You may need antibiotics.

Hi there,

I had the same for a number of years (started as IBS-D and changed to IBS-C).

And I have recovered. So you may find something useful on my blog.

I would suggest getting checked out for SIBO and Candida: sickofibs.com/ibs-symptoms/...

And also consider what is going on in your life that you maybe rejecting?

I have found regular heartburn to be linked to suppressed anger (that I didn't even realise was inside me).

Hope this helps you,

Alison:)

Cquinn1 profile image
Cquinn1 in reply to

How would I get checked. I have looked sibo up on the nhs website and it calls it an alternative diagnosis and i know for a fact my doctor will not do anything about it

A_IBS profile image
A_IBS in reply to Cquinn1

My doctor did dismiss it but I managed to get a referral to a gastro due to weight loss (cutting out lots of foods didn’t help) so I bought it up to my gastro. I had to visit a different hospital to do the test so it’s not very common for them to refer you. I was also told that the results are not very accurate. I found that for a few months eating less veg and fruit (because they are easily fermented by gut bacteria) and leaving at least 4 hours between meals (no snacks) has definitely helped me in the long term!! I was the same as you, pain and toilet problems every day. It took a while but I’m so much better. If you think you have SIBO don’t take probiotics! I hope this helps, I understand how miserable you will feel xx

Cquinn1 profile image
Cquinn1 in reply to A_IBS

I cut out most fruit and veg over a year ago and it hasn't made a difference. In fact I'm now feeling the worst I ever have. Yesterday I went to toilet 5 times with in an hour and passed almost pure water. Feeling very frustrated

A_IBS profile image
A_IBS in reply to Cquinn1

Oh gosh that’s awful!! I went on anti Candida diet then I felt the worst. I saw a nutritionist self funded and wasted a lot of money. Is there anything you are doing every day consistently? It could be a reaction to a chemical or additive. Do you have skin problems like rashes? Do you find it goes away if you’re on holiday/away from home? You may have to do an elimination and reintroduction diet to find out.

Kimmiejo profile image
Kimmiejo

Did they test you for lactose or wheat in tolerance ?

Cquinn1 profile image
Cquinn1 in reply to Kimmiejo

I have had numerous blood tests but never been told what they were testing. I am getting a copy of my medical records so I can check. Thank you

Hiddenaway profile image
Hiddenaway

Sounds like you certainly need to be referred to a gastro specialist. It could be maybe gallbladder related which a scan would be able to show but again they would refer you for that. Hope you get it sorted

Cquinn1 profile image
Cquinn1 in reply to Hiddenaway

Thank you

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