I'm really looking for some advice around my story.  I had three bouts of severe abdominal pain early in 2009 and then nothing until this week.

Each episode is exactly the same.  Very sudden onset with diarrhea and severe,constant pain in abdomen and back.  I compare the pain to labour contractions but not coming in waves, going to the toilet does not reduce pain.  The diarrhea stops about five hours into the episode but the pain intensifies and lasts for around 12 hours in total.  I am usually sick once or twice about three quarters of the way through the episode.  I can handle pain well but this is so severe and normal over the counter drugs don't touch it.  The last two times (once in 2009 and last week) I was hospitalised with it.  They can usually get the pain under control after a couple of hours by trying different things.  The pain stops as quickly as it starts with no tenderness left just a wiped out feeling.

The problem is they did further investigations later in 2009 and found nothing unusual- barium enema, ultrasound, xray of bowel, and magic eye procedure (not full colonoscopy though).

There was protein  in my urine and I had an elevated white blood cell count this time.    I have been receiving regular B12 injections for a deficiency picked up a couple of years ago.  To me this seems to link to Crohns symptoms.

Following the tests last year they put it down to IBS as they couldn't find anything else wrong but one of the doctors I had seen said that IBS shouldn't be as painful as what I was experiencing.

Following my latest admission they have stated they will look at possibly doing a colonoscopy as an out patient.

Does anyone else have a similar tale?  Does the fact that I had nothing for a year mean anything?  Could I be in the early stages of Crohns?  Have others had to wait a long time for a diagnosis?

Any advice would be appreciated!

Hi welshie, I believe Crohns is hard to diagnose sometimes, I was told I had IBS and suffered with it for years (constant trips to the loo). After many x rays, and cameras with biopsies I was told I had Crohns.  I had pain similar to what you described last year (with a very swollen stomach) but no diarrhea and was found to have a particial bowel obstruction due to a narrowing.   Few days in hospital sorted things out and I am now on yet more drugs, but feeling a bit better.  Hope you get things sorted out soon, if it is Crohns its not great news but at least you know what you are dealing with and drugs can help.  

omg, I had exactly that for about 20 years and less than 2 years ago was diagnosed with Crohn's, had to have surgery within 6 months of finding out it was Crohn's.  I swear if it had been picked up sooner there would have been less damage.  However, my Doctors were very good, not quite sure of the benefit of the indesgetion remedies they gave me, and yet to find out!!!!!!!!  Occassionally they would request a blood test, and looking back, there were too many times that they asked whether I had some sort of infection at the time.  Turns out the CRP & ESR reading were abnormal.

My episodes were random, and at times set off by food, fruit & mushrooms mainly.  I did have a barium meal a long time ago, but they were looking or ulcers in my stomach.  Your problem sounds like so similar.  They can take biopsies during the coloscopy so hopefully you will get some answers.  I'm a bit more demanding about the treatment I receive now, and a bit more pushy.  Chase up on the colonscopy, as the sooner you understand what you are dealing with the sooner you can get proper help.

Regards

Julie

Thanks for the replies, perhaps I'll try and insist on the colonoscopy as the next step.  Does anyone else find it upsets their menstrual cycle as well?  Having problems with that as well since the first insistence so they were also looking to see if there was a gyne link.

Hi Welshie

Yes your symptoms sound so familiar.  I went 10 years undiagnosed, basically I did have a colonoscopy (but they couldn't get into the small bowel at the time).  I was told they couldn't find anything wrong and basically to just get on with it, which I did until last year when I got so much worse.  I was diagnosed in May and after a summer of horrendous medicines (which just gave me terrible side effects) I ended up being operated on in November.  I had a large section of diseased bowel removed which as Julie says if it had been picked up sooner there would have been less damage (possibly).  My menstrual cycle is all over the place and my flare ups are always worse during the time of my period, so I think there is some sort of link.   I must say, finding out that I had Crohns caused a mixture of emotions but generally relief as I started to think it was all in my head! The tests they finally used on me to make a final diagnosis were:  another colonoscopy (still didn't show Crohns); small bowel barium x ray; CT scan of the abdomen & finally when I actually had the correct blood tests done, it was very apparent it was Crohns (high CRP levels, very low B12, severely anaemic etc etc).  So keep persevering with the tests, best of luck, Lou

Hi,
Seems alot of have experienced this. I was miss diagnosed for years,but because the pains were not that bad i was told it was ibs. End of 2008 I fell really ill,bad pains in my right side and lost over 3 stone in weight. Ende up in A&E on 3 occassions only to be sent home with pain killers. Had an ultra sound and was told I needed to see the A&E dr straight away as there was a dark mass on my bowl !!! To my utter amazment he said it was nothing and to go home and come back in 2 weeks if I didnt feel any better. All in all I saw 8 different so called drs and specialists who said it was ibs...an infection..kidney stones and just in my head !! I ended up paying private and straight away the specialist said it sounded like Crohs,had a colostomy and was put on steriods. Unfortunally it had got so bad i needed an opp. I ended up with a temp colostomy and a large part of my intestines removed,surgeon said it was a right mess and close to repturing !!

I am so angry that this could have been sorted out sooner I would not have had to have 2 major opps. Why is it if you pay it gets sorted out ???

David