How very frustrating for you! I have the same symptoms and put them down to Behçets as the GI symptoms are so common in Behçets a lot of people have the same.

So frustrating for you though not to have a concrete reason. My gastroscopies showed general inflammation in the stomach (gastritis) and a small hiatus hernia responsible for the acid reflux (I’m on Omeprazole 40mg a day and certainly need it). On my colonoscopy and sigmoidoscopy the only issue was a rectal ulcer causing my bloody diarrhoea. Sometimes the blood is shockingly prolific! I do have steroid rectal foam which heals the ulceration up temporarily when needed.

I do hope you get some answers at some point, but please be assured that the symptoms you describe are common in Behçets, even if the doctors aren’t aware of this.

Sending you all the best,

Will.

Hi GlastoGal

That's good news your test has come back clear they must now consider other tests to try and identify where the blood is coming from, a angiography test should be considered where contrast dye is injected into an artery and X-rays are taken to look for and treat bleeding vessels or other abnormalities. Also other imaging tests such as an abdominal CT scan, this might find the source of the bleed.

How long will it take for the results of the biopsies to get back to you?

Please keep us updated, I have a few issues ongoing at the moment and I am not sure if medication related or not, I have a colonoscopy beginning of next month.

Take care, Gillian

I do feel for you as I'm in the same situation. I've had 3 endoscopies, 2 colonoscopies, a sigmoidoscopy & an ercp & all have come back as normal. They too biopsies & they showed nothing either. After being under the gastro team for 18 months they have now discharged me & said it's all to do with tge Behcéts Disease. Like you I already knew that but would like to know what starts these symptoms off so I can try & avoid further outbreaks. Stay positive & remember you are not alone with the problems this awful disease causes. We are all here to support & encoyrage each other. Best of luck in the future. XX

You really have been given mixed messages. It must be worrying & frustrating. Seems we've both been discharged without a satisfactory solution to the problem. I do hope things improve for you & the symptoms subside. Take care of yourself. XX

I agree it does cause unnecessary concern when they tell you things like that. They showed me the areas of concern on the monitor too. I think we just have to accept that with this disease these added problems are going to rear their ugly heads at times & we have to cope with them as best we can. I must admit I have seriously had enough of cameras being poken into places they shouldn't be & hope we never have to go through the discomfort again in a hurry. All the very best to you in your recovery. XX

Hi GlastoGal,

I too have been suffering with gastro symptoms due to chronic inflammation. I’ve had 2 endoscopies this year and a colonoscopy. The interesting finding of the first endoscopy was that I have eosinophil esophagitis. I had damage of the esophagus with plaques. I’ve had difficulty swallowing for many years so now I finally found out what it was. My gastro figured it was that during the endoscopy but he confirmed the diagnosis by biopsy. He gave me Jorveza, some sort of steroid but a newer drug and quite costly that really helped and on the second biopsy the esophagitis was under control. The second finding was a helicobacter pilori infection which was causing inflammation in my stomach and a lot of acid. Has your gastro checked for this? It took longer to find the right treatment for this bacteria as it was resistant to 2 common antibiotics. I also took Nexium and Pentazole, both very good proton pump inhibitors. So my suggestion is to ask your doctors about these other conditions. My colonoscopy was also negative, I don’t have bleeding, but mostly bloating, pain, colon spasms. My guess would be that you had some sort of ulceration but by the time you got your colonoscopy it was gone.

Good luck with your biopsy results!

I’ve had all these procedures and all these symptoms since 20’s now late 30’s (diagnosed in 20’s) and continue to, in the end mine turned out to be Behcet’s caused enteric neuropathy caused gastroparesis and Intussusception, when my bowel completely blocks. The gastro Dr’s obviously worried about the Intussusception, as it’s an emergency and mine does it a couple of times a month, did all the other tests to rule out everything else. They were very puzzled. Saw it in MRI barium). Wanted to do surgery. I lived with this for years slowly getting worse, using prednisone regularly, with all the other Behcet’s physical symptoms, but then it started to attack my brain and other nerves and couldn’t talk properly, stopped being able to feel I needed a poo or push, couldn’t empty bladder properly, lost my short term memory was very confused. Personality changed. Couldn’t follow tv show. Even now I have to watch tv with subtitles and sound, I got better but I’m no where near the person I was. This was over a year ago still on 20mgs of Prednisone.

My daughter has huge problems with her bowel, she’s had numerous colonoscopy’s. Endoscopys. Capsule test recently, numerous biopsy’s. everything shows as normal.

She’s in constant pain started on mmf a few months ago. Takes 20-40 mg of pred a day which is the only thing which helps. She’s been on every medication on the list in the last 4 years. Including huge amounts of pain killers. I do wonder if the medication makes things worse.

She has just been ok’d to go on Biological drugs by self injection. I’m praying this means other meds can start to come down to see if it helps.

They CofE units are not that good, we’ve been very frustrated by ours and most people seem to be. They even had a bowel specialist who spoke to Faith as if she was putting it all on. She had an ulcer which the bowel woman said she couldn’t see.

It was after removed by our local hospital and was huge but all testing came back as inconclusive as it always does.

We’re lucky only an hour from Birmingham one, but doubt we’d still be going if further. One lady last time we were there was from Bath and had stayed at a hotel the night before, it was a repeat visit because they had lost her previous blood tests.

It’s a very frustrating time for sure.

I also experience the same symptoms with my Bechets along with bleeding, I also experience menstrual abnormalities along with the GI abnormalities.