Behcets and a bowel bleed?

[vikkilouise]

Hello, I've not been diagnosed and will see someone who specialises in behcets, one of my doctors thinks its very likely I do have it, the other said unlikely as I'm white British (my gp pointed out so are other sufferers). Anyway doc 1 thought the episodes of me passing blood clots (darker and not fresh) could be related, he other said if your having a bowel bleed in behcets them your on deaths door which I'm obviously not. I wondered if anyone gets it? It nearly always happens during a flare up

[lesleyg]

Hi Vikkilouise,

I am 55 years old from a very Anglo Saxen background (female) living in Australia. When I was first diagnosed two years ago there was a bit of kerfuffle because I wasn't a male from a Mediterranean background.

The doctor who made the original diagnosis said the information was incorrect, its just that is the group it was originally picked up in by Dr Hulusi Behçet in the 1930's and that is where all the studies started. It is now acknowleged that it can affect both male and females of quite different backgrounds.

I have had the bleeding you described and was very thoroughly tested (colonoscopy and swallowing a camera in a pill which took photos as it passed through the colon). The gastroenterologist told me he had another patient with BD and that Behcet's patients tend to get the ulcer in the bowel in a certain location (not sure if this is correct). Anyway, his letter back to my GP said he found no evidence of Behcet's disease (in one way thank goodness), however I have diagnosed as definitely having BD.

Hope that helps

Lesley

[lesleyg]

Hi Vikkilouise, the dermatologist who made the diagnosis was adamant that the flare-ups came from an inflammed bowel.

Lesley

[andreafm]

I also get episodes of bowel inflammation/bleeding and it maybe a coincidance or not, but it flares up regularly [as with a lot of my symptoms] when leading upto mensturation.

Andrea

[tamirra]

My daughter is half Greek Cypriott with BD she has had occasional bleeds and bouts of diarrhea and pains in her stomach when she has a flare, a colonoscopy was done and they only found that she had Hyetus hernia but nothing in her bowel.

[Hidden]

IT SEEMS YOU ALREADY SEE MORE THAN ONE DOCTOR. THE FIRST ONE SAYS IT IS UNLIKELY YOU HAVE BD BECAUSE YOU ARE WHITE BRITISH

The BD Society says;

“it is not to do with ethnic origin, gender, lifestyle, age, where someone has lived or where they have been on holiday.”

“No-one knows for sure how many people with Behçet’s disease there are in the UK, but it is estimated that there are about 1 in 100,000 - that is, about 1000 people. It is much less rare in the Middle East and in Asia. Because it seems to be prevalent in the areas surrounding the old silk trading routes, it is sometimes known as the 'Silk Route' disease.”

HOWEVER, UNLIKELY DOESN’T MEAN NOT POSSIBLE. PERHAPS THIS PERSON WAS MAKING A GENERAL REMARK BASED ON STATISTICS AND DID NOT MEAN THAT YOU DON’T HAVE IT AT ALL.

IF THIS IS THE SAME DOC WHO SAID YOU WOULD BE AT DEATH’S DOOR IF YOU ARE HAVING A BOWEL BLEED IT IMPLIES THAT HE DIDN’T BELIEVE YOU, UNLESS HE IS TAKING IT FURTHER OR HAS CARRIED OUT AN EXAMINATION/TESTS WHICH SHOW YOU DID NOT HAVE A BOWEL BLEED.

BLOOD CAN DISCHARGE FROM THE RECTUM FOR DIFFERENT REASONS, SUCH AS FISSURES AND INTERNAL PILES, AS WELL AS MORE SERIOUS BLEEDING DUE TO OTHER CAUSES.

IF THOSE WERE HIS ACTUAL WORDS THEN HE WAS UNPROFESSIONAL IN THE WAY HE SPOKE TO YOU. HOWEVER, NOT KNOWING WHO HE WAS OR WHY YOU SAW HIM MAKES IT DIFFICULT TO JUDGE WHAT THAT APPOINTMENT WAS ALL ABOUT. EITHER WAY, IT CLEARLY WASN’T HELPFUL AND YOU DO NEED TO SEE THE RIGHT PERSON.

THE DOCTOR WHO THOUGHT YOU DO HAVE IT AND THAT PASSING CLOTS COULD BE RELATED IS HOPEFULLY THE ONE WHO HAS, OR IS GOING TO REFER YOU TO SPECIALISTS. YOU CAN ASK FOR A SPECIFIC REFERRAL.

REGARDLESS OF THE BLEEDING BEING RELATED OR NOT, IT NEEDS TO BE INVESTIGATED. YOU COULD HAVE BD AND IT NOT BE RELATED, BD AND IT IS RELATED, OR NOT HAVE BD AT ALL – YOU DON’T SEEM TO HAVE THE ANSWER TO ANY OF THAT YET SO I URGE YOU TO ENSURE YOU SEE A SUITABLE SPECIALIST WHO SHOULD LOOK AT ALL ASPECTS OF YOUR SYMPTOMS, HISTORICALLY AND CURRENTLY. THE BD SOCIETY CAN RECOMMEND SPECIALISTS AND THERE ARE NOW CENTRES OF EXCELLENCE IN THE UK WHERE YOU CAN SEE MORE THAN ONE SPECIALIST.

SOMETIMES SYMPTOMS ARE NOT APPARENT ON THE DAY OF AN APPOINTMENT SO IT’S IMPORTANT THAT ANYONE WHO SEES YOU IS AWARE OF YOUR HISTORY – JUST MAIN POINTS, NOT LISTS AND LISTS.

THE SOCIETY ALSO HAS INFO ON BOWEL ISSUES

behcets.org.uk/Documents/we...

BEAR IN MIND THAT ANYONE ELSE WITH BD WHO HAS BLEEDING FROM THE RECTUM DOES NOT NECESSARILY HAVE THE SAME PROBLEM AS YOU.

[andreafm]

That's really helpful tigerfeet, particularly the link to the help sheets.

I find the help documents have been very useful to me in the past, to at least get doctors investigating these problems fully.

However, it is still a dismay and frustration to me that so many doctors still persist in making remarks regarding a person ethniticty as a diagnostic tool for NOT diagnosing behcets.

Hi vikkilouise

Perhaps you could copy some of the relevant bits from the Behcets Society website and get the doctors who are dealing with you to read them first, before your next consultation with them.....

I do this and it seems to stop any of the remarks [such as you being white british or "that doesn't happen with behcets" or "you would be at deaths door if it was"] and helps them to focus on your condition better.

The help sheets are written by consultants who are experienced with behcets and so it is very difficult for other doctors to disregard. Some of my consultants at my local hospital have even contacted the experienced consultants for advice after they have read the helpsheets...so they are very useful.

Good Luck

Andrea

[Hidden]

Hi Vikkilouise

I was in hospital last year with after passing blood(fresh blood and clots). I had been pretty sick with ulcers before that. When I passed blood I was pretty sick but not on deaths door (I don't think anyway, I like to think positive :)) i was put on IV steroids. Its happened a couple of times since but i've not been quite so ill with them.

I am also white British (now living in Australia) and I have also had a dr tell me that i've been miss diagnosed even though I have 95% of the symptoms of Behcets and Pathogy test has been positive as well as the mouth and genital ulcers.

Good luck with your diagnosis and I hope you get some relief from your symptoms

Moys xx