IBS,IBD, Coeliac, Crohns & other Gastointestational Maladies

[GMX]

On the off chance anyone on here has IBS, IBD, Coeliac Disease, Crohn's disease or another gastrointestinal malady for life

A few questions

How long was between first seeing a GP and getting a confirmed diagnosis?

Or did you work out what was wrong,  and then sought confirmation from a medic?

Which tests did they use to confirm you had it, or confirm you didn't?

Were you mis-diagnosed with something else, before they arrived at the correct diagnosis? Or perhaps they still haven't got there?

Was it worth getting a formal diagnosis when most of these conditions whilst manageable with diet/lifestyle changes, are not curable as such?

I've been researching my lower left quadrant pain, which has been there this time for about a month, only recently intensifying now with the added stabbing spasms of a much higher level of pain.  I've had it before, but not anything prior to 2012. On two occasions, to the point of being taken off to A&E by ambulance in agony, only to find all the regular tests I was negative on.  Admittedly they only tested for kidney and gall stones, they didn't investigate any further, before declaring they didn't know.

Together with a few symptoms that I've put to one side "one of those random things that happen" but might be significant, random nausea with follow up vomiting, days of unexplained periods of diarrhoea, sudden onset of migraines yet no history of getting them before, an odd exhaustion following the consumption of carbs and sometimes protein, the weird feeling of an obstruction like a tennis ball sized object that's stuck somewhere in my descending colon most of the time.

All the web based symptom checkers are suggesting Coeliac disease or possibly IBS with lesser chance of IBD and Crohn's.  I was under the wrong, it turns out,  impression that you didn't suddenly get these later, that they became apparent during childhood.  Apparently not so, whilst the bulk are, people have been diagnosed with them later, from every age group.

But they go on to say that diagnosis of gastrointestinal issues is fraught with mis-diagnosis and takes on average 6-10 years for the medics to find the correct diagnosis, if you're lucky.  Not many young doctors want to specialise in it, it's sibling bariatrics and obs and gynae are more the attractive options, and consequently there is less research being done.

My GP practice are also a bit too keen on prescribing "something" rather pursuing proper procedural diagnosis first, then presenting you with the options for cure/management. Half the time they've printed off a script before they've even examined anything.  Probably more more to do GP performance league table and getting the patient out the door with something: rather incompetance.  It was different before the DOH introduced league tables.

 

 

 

[TomsFocus]

So many questions!!

I have IBS, but am not the best person to ask about it lol.  Basically I ignored it for a while, thought it was just part of getting older (I was about 12 when it noticeably started lol).  I hate doctors so just put up with it.  There isn't a proper test for it, they just do lots of other tests to rule out worse things, and when they all come up negative they label it IBS.

I'm terrified of needles so didn't have the blood tests done, and didn't fancy a camera up my tail pipe either.  There is a food avoidance test that can be done, worked well for one of my mates but it didn't work for me as mine is anxiety related as well.  After 10 years I was finally diagnosed with IBS and a few other mental issues.

Has it made any difference?  Nope...lol...  I can't find any food that triggers it every time, depends on stress levels and sometimes seems to have no trigger at all, I was basically told reducing stress would be the best way to ease the problem.  At the same time I was diagnosed with severe anxiety disorder...so reducing stress isn't exactly easy!  

 

[GaryPL]

I have ulcerative colitis. Taken your questions as you posed them.

Those who have a weak constitution are advised to not read any further.  The subject is a bit icky...

1. My GP was next to useless. I presented there with my conditions a few times over a number of weeks. It was at the point that I was going to the toilet somewhere in the region of 30-40 times a day and all I got was fobbed off by the various locums my doctor's surgery uses.  I was prescribed IBS tablets. Told it'd pass. I was probably having the symptoms for somewhere in the region of 3 months in total and it was exhausting.  The cramps were agonising (to the point that I had no energy and there's still a crack in my bathtub side-panel where I couldn't support my own legs and one rested there until panel split).  So yeah, GPs will fob you off.  In the end, out of sheer desperation, I went to my local A&E and didn't end up coming out of hospital for 3 weeks. My car parking bill was significant!  Even after being taken under the wings of the gastroenterology consultants, a diagnosis was not forthcoming for well over a year. 

2. I had no idea what was wrong. I had had a weak tummy for years before, which always had flare ups.  The flare up I refer to above was something else though.  Like much much worse.

3. I have had a lot of tests.  Standard blood tests, arterial gas tests (this one hurt), I had to keep a stool chart, I had a sigmoidoscopy, a colonoscopy, ultrasound, x-rays. Basically there are more photos of my bowels than my face around now.

4. I found that once I was under the consultants, I did not get an incorrect diagnosis.  They just didn't diagnose anything until they were certain.

5. Definitely worth getting the diagnosis.  It's also very wrong to consider that lifestyle changes can manage UC or Crohn's. Not one piece of research has conclusively linked either of these to dietary causes.  With both of these conditions, you will almost certainly be on medication for life.  After my major flare up, which was brought under control with IV steroids and immunosuppressants, the standard first line treatment (mesalamine) seems to have done what it needs to.  And UC is actually completely curable - if you want to have a stoma...

 

And comments on what else you have said.  Yes, you can suddenly develop most of the IBD conditions.  Most common age is early 20s to mid 30s.  I was slap bang in the middle of this when I was diagnosed.

Oh, and please, stop self-diagnosing. Go to the doctor or hospital and make them carry out tests. And just so you know, UC has a couple of potentially dangerous (and even fatal) conditions linked to it.  Although they are rare, they are not unheard of which is why I was kept in for so long.  Google "toxic megacolon" and "gastrointestinal perforation".

[chemfusion]

Like Gary, I had (or should I say still have) UC. Went from completely normal to very ill in a matter of two weeks, in late 2010. Went on multiple medications, including steroids, anti-inflammatories and immuno-suppressants. Ended up having emergency surgery when I was meant to be sitting my A-level exams and have had a further 3 operations during uni. So practically speaking I'm 'cured' but chances are the underlying reason, whatever it was, is still there.

In my experience, what you describe doesn't, to me, sound like UC or Crohn's. Otherwise chances are you would be bleeding from behind.

It was confirmed by flexible sigmoidoscopies/endoscopies (camera up the rear) and a biopsy. Having seen the inside of my colon on a screen in front of me you can clearly see straight away that something's wrong! It was only due to my friend's Mum working in the hospital that I got a quick referral to the relevant peeps and was diagnosed pretty quick.

Worst case scenario it's Crohn's, second place UC, in which case the best team to be treated by are the gastro peeps at the John Radcliffe hospital in Oxford. They alongside St. Marks (or it might have been St. Thomas') in London pioneered the surgery for it in the 80's.

[GMX]

Thanks Tom, Gary and James

Following on from your contributions, I've now commenced the process by booking an appointment with one of my GPs, such is the demand (or lack of GPs) the earliest I can get is in 3 weeks time.  What an earth people who need see "a doctor now" do, but aren't ill enough to warrant an emergency, is a mystery

Whilst not trying to self diagnose (again) Coeliac Disease fits my symptoms more than the others, with IBS coming up the rear, but some way behind, in likelyhood

From what I read and from what you have said, I don't think UC or Crohn's is likely, I don't have rectal bleeding (I've looked) my stool is lighter than it use to be but there's no blood in it. My urinalysis is normal too, I just happen to have a 11 parameter kit, from when I do % body fat reduction diets (to monitor ketone levels and glucose levels).

UC and it's complications look like one of the worst conditions that can befall you

[Joss max]

I think it still very much a post code lottery when it comes to getting referrals and diagnostic work Done. I guess you should insist your GP makes a referral to the appropriate dept for investigation. what is your age Ghana?

I had a problem with rectal bleeding and was sent to hospital for tests. maybe i was fortunate enough to have been seen by the department consultant but I got the full works.

As a result i was booked in a week later for a colonoscope procedure. The bowl prep was horrendous, but that is a story for an other time lol. Any during the procedure 5 polyps where removed from my colon and descending colon. Also I was diagnosed with Diverticulitis.

Because the polyps keep returning I now have to the procedure done every 12 months. As i am on warferin and insulin it means i have to go into hospital for 3 or 4 days.

I used to have sedation but now prefer entinox and i love it lol. Best thing is being able to watch the whole procedure on HD 50 inch screen. Absolutely fascinating to watch.

[chemfusion]

3 hours ago, GMX said:

UC and it's complications look like one of the worst conditions that can befall you

Yeah it was proper nasty. Wouldn't wish it on anyone

[GMX]

3 hours ago, Joss max said:

I think it still very much a post code lottery when it comes to getting referrals and diagnostic work Done. I guess you should insist your GP makes a referral to the appropriate dept for investigation. what is your age Ghana?

Southampton's Royal South Hants hospital used to be specialists for gastro-urinary medicine in the South.  I have had oesphagal reflux issues in the past, it was the consultants there that I was referred to the 80's.  They may not be now, that was quite a while ago.

I think i'm one of the older ones on here at 50

[Joss max]

11 hours ago, GMX said:

Southampton's Royal South Hants hospital used to be specialists for gastro-urinary medicine in the South.  I have had oesphagal reflux issues in the past, it was the consultants there that I was referred to the 80's.  They may not be now, that was quite a while ago.

I think i'm one of the older ones on here at 50

I am 59 Ghana

[GMX]

2 hours ago, Joss max said:

I am 59 Ghana

So, that's you, me and Mark (Mondeo TXS 2.2) who i think is 57, occupying the maturer end of the club

[Peteven]

You three are just kids I'm 66 but 25 in my head lol.

[Steve]

I have had issues for about 9 years, doctors have done loads of tests 

In the end o found i have an intolerance to certain breads, especially supermarket breads. 

For instance if i ate a white bap from tesco i would feel like i have been kicked in the stomach.

I cannot remember the name of the preservative they use, but when i was in russia and asia, their breads are firm when fresh but i can eat that all day long. Just the soft squidy bread we get here.