Have you got IBS or IBD (Irritable Bowel Syndrome / Disease)

I am just wondering if anyone here has IBS. My gastro thinks I have IBS, but I disagree. Hence wondering how others are affected.

If you get a moment, please answer the following:

1. How long have you had it?
2. What are your symptoms?
3. Have your symptoms become worse or better over the years?
4. What do you think causes IBS, or caused or triggered your own IBS?
5. Who diagnosed you? (GP or Gastro?)
6. As IBS was traditionally a diagnosis of exclusion, what else were you tested for or what else was excluded?
7. Do you have any other non-IBS type symptoms?
8. Are your symptoms nocturnal?
9. Do you get diarrhoea or constipation (or both)?
10. Have you noticed any triggers? Such as certain foods/stress, etc?
11. Are you on any medications for it? Do they help? (yes/no/not sure if they do)
12. Do you accept you have IBS, or do you think there is some other cause?
13. Have you read up or researched the condition other than that what was provided to you by your GP or Gastro? If so did you find anything interesting? Or anything that contradicts what your GP or Gastro told you?
14. Anything else you'd like to share?

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AZZ,if you disagree that you have IBS,insist on further testing.
I have two family members who were mis-diagnosed with the condition.
Last year my youngest (13) was told she had the condition,purely based on her symtoms.Turns out she is actually Lactose intolerant,has cut out all offending food stuff and is doing really well,no problems
10 years ago my older brother was also diagnosed with IBS,was being treated accordingly. Ended up very seriously ill discovered he had Crohn's Disease.The specialist told him that the symptoms of IBS are very similar to that of other conditions.

Hi Eileen, I am already lactose intolerant (I had a DNA test)

I have also insisted on further testing as I am not willing to accept I have IBS (what the feck IS ibs anyway?) I believe there is some underlying cause and they need to investigate (which they are, somewhat reluctantly and not without plenty of protest from me).

What I find really astounding tho, is how eager they were to diagnose with IBS - it's almost as if they can't be bothered and just want to label us and get us off their lists asap

Azz - IBS and IBD are not the same thing. IBS [Irritable Bowel Syndrome] http://www.nhs.uk/Conditions/Irritab...roduction.aspx is a set of sumptoms which cannot be diagnosed as any one thing.

IBD Inflammatory Bowel Disease http://www.nhs.uk/conditions/inflamm...roduction.aspx has different types which can be diagnosed - Crohns and Ulcerative Colitis being two of them.

Seems to be exactly that Azz Keep pushing,change your doc,whatever it takes to find out what's going on,would be my advice...go with your gut( no pun intended)

Hi Malka

I put them both together as there are similarities between what some people think causes both - for eg, the MAP bacteria that is almost always found in Crohns patients (and how, as Eileen said) some people are diagnosed with IBS when they have Crohns (or other diseases). I guess I am interested in anything that is IBS or IBS-like

1. Hi Azz, after extensive testing for H pylori (negative), then 2 endescopes one at each end, they said he had IBS, so I'm answering for Dave here.
   
2. How long have you had it? -
   10 years
   
3. What are your symptoms? -
   Stomach burning (indigestion), constipation, diarrhea, bloatedness, stomach pain, wind, sharp esophagus pains when driving, or high up stomach pain when driving
   
4. Have your symptoms become worse or better over the years? -
   Worse, now has more symptoms
   
5. What do you think causes IBS, or caused or triggered your own IBS? -
   Honestly don't know
   
6. Who diagnosed you? (GP or Gastro?) -
   Hospital
   
7. As IBS was traditionally a diagnosis of exclusion, what else were you tested for or what else was excluded? -
   Endoscopy found some prolyps which were removed, but apart from that nothing else. Stomach endoscopy found nothing. H Pylori test came back negative. Scan. Spinal tap, had it all.
   
8. Do you have any other non-IBS type symptoms? -
   Headaches which are totally different from my normal migraine headaches which I've always had. Aching joints/muscles. High bp when exerting myself, but not otherwise. Big lumps appearing on various parts of my anatomy, especially on my back at the hip area. Don't sleep, apart from an hour here and there during the night. Passing a lot of blood, hence the need for endescope.
   
9. Are your symptoms nocturnal? -
   No
   
10. Do you get diarrhoea or constipation (or both)? -
    Both. Haven't had a normal poop since all this started.
    
11. Have you noticed any triggers? Such as certain foods/stress, etc? -
    I would say stress is a major factor with me
    
12. Are you on any medications for it? Do they help? (yes/no/not sure if they do) -
    Currently live on Paracetamols and Ibuprofens taken together just to get through the day.
    
13. Do you accept you have IBS, or do you think there is some other cause? -
    No, never have accepted it. It seems to me the gp's just don't seem to care, and have fobbed me off with IBS, because they're probably at a loss as to what to do next!
    
14. Have you read up or researched the condition other than that what was provided to you by your GP or Gastro? If so did you find anything interesting? Or anything that contradicts what your GP or Gastro told you? -
    Not bothered with any of that, don't have the time, too stressed.
    
15. Anything else you'd like to share? -
    One thing I DON'T ever get is sickness or vomiting, but that's about it!
    

Hope some of that helps Azz.

Zena has also been diagnosed with IBS, and I HAVE researched on it in the canine world, and I feel my vet was correct in his diagnosis and ongoing, daily treatment. She has to take a metronidazole tablet 400 mg every, single day of her life and it keeps it at bay, BUT, he has told me that metronidazole works in a completely different way in a dog to that of a human, so it wouldn't do any good. Having said that, when researching about Zena's IBS I have come across forums/pages, whereby people DO take metronidazole on a daily basis and it keeps the symptoms at bay, they only get the occasional flare ups, which of course, I get with Zena.

Why do you disagree with the Diagnosis Azz.....

Has your doctor investigated for Coeliac disease this can be missed or in some cases be misdiagnosed as IBS /Colitis or other bowel disorders.

I friend has recently been diagnosed with Coeliac disease and only after much persistence from her with her Doctor to have it investigated.

First, some info on stress.

When you are stressed your body releases cortisol, when your body is fighting an infection your adrenals go into overdrive. Cortisol is a waster of vital electrolytes.

If you have an underlying infection that your body is fighting, stress will make it worse, hence a possible cause of triggering IBS symptoms; because your body is less able to deal with whatever it is that is the root cause.

Thanks Eileen, I am going to stick to my guns on this one

Wow, there are so many things that scream parasite infection there Helena (a number of symptoms I share as well).

But don't expect a diagnosis from conventional testing - because it is very hit n miss. For a start many parasites degrade quickly, so you need a hot sample that is looked at right away. In addition some microbes only show up with the right staining, and of course, parasites are not shedding all the time - so you need to submit about 10 samples for an 80% chance for the infection being picked up!

I have had lots of stool tests over the years at the local hospital and not a single one has come back positive! So I went ahead and got a private, PCR test from extracted DNA done from a lab in Oxford - and that came back positive for an unclassified protozoa.

This means that they detected kingdom protozoa with their universal probe, but the exact dna is not in their database. This could mean I picked up a microbe from pets, or ingested via food. Or that it is a sub-type, or one with slightly different DNA - that isn't in their database.

If the patient doesn't have GI symptoms it can be ignored, but if they do, it is recommended that further testing is done or the patient is treated with a wide-spectrum anti-protozal.

Has Dave ever tried anything like Metronidazole? How does he feel when he eats anything like a pineapple or papaya? (Both have anti-parasite properties.) With Zena getting relief from this seems to suggest a parasite (or gram negative bacteria) problem - which is why I would investigate further.

The huge problem with parasitic infections, is the effect they have on adrenals and electrolytes such as magnesium - magnesium is *very* important for heart health.

For many reasons, including the one above. IBS isn't contagious, yet so many people in my family got sick around the same time. Plus there are lots of other tell tale signs that I pick up on, that perhaps others in the family don't.

There have also been a number of studies where, people with IBS symtpoms have been found to have a parasite, and on eradication, they get significant improvment with their symptoms.

I have had a blood test for CD, and, when I have the endoscopy they are going to take a sample for a CD test too.

Azz I can't speak from personal experience but my eldest son was told (when they'd run out of ideas) that he had IBS.

He spent a week or so in Cuba when he left the Cayman Is. before flying to the UK and then on to Cyprus. He was so ill on arrival in the UK he had to remain where he was in the airport hotel for 3 or 4 days before he could continue. He was ill forever. It then went on on and off for years with them telling him IBS was all they could put it down too.

Yes he has stress but always has had it. It was worse every time he ate a large meal or had alcohol.

In fact during some of this time he was going to the doc complaining of the terrible pains in his back and they were even putting that down to the IBS. (He had two major spinal ops last year - I don't think IBS caused his spine to get to stage 4 degenerative!

I think maybe there was an element of a vicious circle of something wrong with him. But overriding all of that my thoughts were - just because you have ONE thing wrong with you, doesn't mean you can't have ANOTHER thing wrong with you does it?

Like the doc waving my concerns aside about my painful and increasingly useless weak right arm and telling me 'nothing you can do about osteo arth. except keep taking anti inflammatories and it was getting worse and worse and worse every day. My point was it didn't hurt me at all ever before and then - one day - when I'd been doing some overarm backstroke swimming - it suddenly became REALLY painful. I didn't think that sounded like onset of arthritis.

But, because they could see the visible sign of the start of it with the Heberden's Nodules on index finger joint - they just put everything down to it. The fingers weren't hurting me at all!

Osteo diagnosed it in five minutes. Said she knew what it was - C5 vertebra prob causing pain in what they call the C5 patch - bicep, wrist, fingers. Did a bit of manipulation and hey presto.