Gastroenterologists with Behcets experience

[SCMW]

I’ve had gastro symptoms as long as I can remember and do believe it is Behcets associated. I’ve had IBS diagnosed as a child since then, you’ll see my other posts previous, bloating, bleeding, ulceration externally in that area etc with most recently faecal incontinence at times with urgency for toileting up to say 4 times a day. I’ve been recommended fit and cal protectin tests which I’ve done before, also had flexi sig with biopsy and nothing found.

my query is how do they differentiate from or diagnose - symptoms, activity charts? I saw a recent post of 1 in 10 cited as being investigated but no findings as such in this area, and even if it were the Behcets causing this, is this sulfasalazine or azathioprine as treatment? Any thoughts welcome.

[Frogge]

Similar issues... following...

[gillianTS]

Virtually similar issues here too. Had that many tests and still not solved. I never understand the vast changes from one time to another in stomach and or bowel issues. Had treatment including months of low dose antibiotics followed by huge volumes of probiotics, nothing really changes other than things move around from stomach to bowel or both.I recently was scheduled for another MRI, I had been advised by my surgeon, he's investigating yet another hidden Inguinal hernia and the last repair on the opposite side but decided due to bowel issues and not knowing if bowel was involved or if the bowel was the ussue, he wanted a Dynamic MRI carried out. A Dynamic MRI is a little different and I was ready for this and it was the exact MRI my gastroenterologist wanted too. Only Radiology decided that I was not having this entirely as it should be. I was in the machine and was told not long now but we want you to hold your breath for 20 seconds and bear down like you are going to the bathroom, surely they did not want me to soil myself... I had not been given an enema. I did the best I could and this process was repeated 3 times. I remember feeling uncomfortable with abdominal discomfort and thought the MRI must have upset my abdomen somehow. I left and went home, I suffered a really awful reaction and feel like something must have backed up. Under my ribcage on the left, where my stomach lies is sore and bloating hugely every day. I am yet to receive the results of the MRI and have also just prior to Christmas had a abdominal and pelvis CT Scan. I am kind of hoping someone can tell me what is going on.

All I get told is Behcets can have gastric issues but not really pinpointing exactly what and how to treat.

Recently been looking at 3 alternatives to try and see if any help. Betaine HCL, Digestive Enzymes, and Beetroot Powder capsules. My stomach acid levels have never been checked. The gastroenterologist does not think my rare diverticulum of the gallbladder has anything to do with gastric/bowel issues so I keep wondering again about helping myself with products they can ultimately prescribe or recommend I just try.

I was previously on azathioprine, no help for gastric, and I read azathioprine and prednisone, another drug I previously took, can affect your stomach and bile and acid levels in your body. And that all these can contribute to gastric ulcers, very loose stools, constipation, bloating etc etc.

Hope you get some relief soon and answers x

[SCMW in reply to gillianTS]

hi Gillian, thanks so much for sharing, other posts I can see cite Prof Moots as saying 1 in 10 Behcets patients don’t show gastro issues on exam, I’m being told to take azathioprine due to some inflammation in the eye now (though not sure if current or settling), even if it helped the gastro issues I didn’t see the point of investigating afterwards if it changed anything but to check before. The COE has said basically to get gastro symptoms checked as a co morbidity as it is rare in Behcets, tho figures I’ve seen suggest up to 25%.

Interesting you’ve mentioned betaine - through pharmacogenetics testing, I picked up I’ve got genes that suggest my big K and B absorption cycles are faulty, I also found a reference to betaine and most recently choline.

Like you I feel investigation isn’t going to yield much and that I need to find out what to do to help myself - diet especially - in last years AGM Dr Graham Wallace presented findings of a diet that helped Behcets patients headed up Birmingham. I’ve put a question to the Behcets U.K. panel on this.

I’ll share anything I think could be useful. Thanks. Best wishes.

[gillianTS in reply to SCMW]

Thank you for your reply. I would be really interested in what an expert states is a good diet for Behcets. And any clarification would be helpful. I have changed my diet so many times to try and factor in oral and genital ulcers, joints and muscles, head issues as well as gastric and bowel issues and none of them really complement one another. Avoidance of one food type brings on another issue... I was taken off Azathioprine due to me having continous repeated herpes episodes, something that I had not experienced before. These episodes have not stopped and I feel my eyes and other parts of my skin/body are being affected too. My rheumatologist is now referring me to another specialist to have a look at this. I have asked so many times over the last couple of years could this herpes be affecting other parts of my body, but sadly I think I am talking to people who have a lack of knowledge in this department. I have read quite a few medical articles and it is alarming what herpes can do to the body whilst lurking around untreated. I simply do not want to go on some maintenance dose of some medication without a full explanation from an expert.

I took a couple of days of digestive enzymes, my fear is how this affects going to the toilet. I was amazed it made it a better, in that it was formed, something I have lacked in a long time. I am a little hesitant of continuing because of waiting for my MRI and CT results.

Look forward to hearing back from you. X

[Icefire]

Hi there,

I feel for you with the gut issues. That must be very tricky for you. I've had IBS type symptoms for years but never really discussed it with a Dr. (On and off loose stools and stomach cramps) I think the symptoms came on so gradually over the course of years, that I didn't realise my stools were not normal!!

After 26 years of Bechets I'm very nearly in remission (for now). I've tried ever diet and supplement going. I've made a few changes this year that have made a big impact. I took VSL#3 probiotics for 2 months. Which seemed to allow me to gradually reintroduce butter and kefir. I had been dairy and gluten free for a couple of years.

I now take L.Rueteri, kefir, and Optibac everyday extra. I mix and match and realise that its a bit of a stab in the dark as to what might be missing in my microbiome!!

The biggest change came from tracking my blood glucose with a continuous glucose monitor. (Freestyle libra). I was surprised to find my blood glucose levels shooting up to 10.8 mmol/L after a small amount of sweet potato and parsnip, mixed with other veg and roast meat. Whilst it's new technology, from what I could find 'normal people' should peak at ~7.7mmol/L after eating then drop down to between 4 and 5 mmol/L.

I found I was peaking high then dropping low two hours later regularly throught the day. Having cut out or down significantly on my 'white carbs' my gut is a huge amount better! During this point of the Christmas period I would normally be full of mouth ulcers and really suffering with gut all over the place and joints swelling. This year I have one tiny spot from over indulging a little. I've still enjoyed the Christmas food, just tried to time it for after a meal or after a run.

I've cut down on snacking and do my best not to eat ultra processed food. Emulsifiers in particular acused of disrupting gut bacteria.

The glucose goddess has some useful tips on managing blood glucose levels.

When I posted about this previously I heard from someone who did the Zoe project and is now off all meds and another person who said Rhuematologist had told them to avoid refined white carbs.

Anyway. Good luck.

[Matillymoo]

Hey SCMW and Behcet's fam who are following this post! I have looked into this question previously (I have Neuro Bechet's and a long history of gut problems) and found some scholarly articles that propose an answer to the diagnosis question. I have been puzzled over by 2 gastroenterologists, one of whom was certain i had crohn's (but I didn't. Just inflammation and a bunch of precancerous polyps!) Next time I go back I will bring this article with me.ped-rheum.biomedcentral.com...

Whether your doctor confirms it or not, it is probably from the Behcet's, if you have tried and ruled out everything else! Mine was improved (reduced frequency) by sulfasalazine for a while, then it stopped working after a year or so. Steroids like prednisone seem to work like a magic bullet but obviously they're a short term solution. I had some success with humira, when i was on that for my previous diagnosis of psoriatic arthritis, but the amount i was prescribed wasn't enough to hold off the disease and symptoms eventually came back. I also had terrible ulcers the whole time i was on humira. So you win some you lose some. And everyone is different, maybe one of those would work long term for you! I'm on infliximab now and although my diarrhoea has improved in that I'm down to about 3 times a day instead of 5 to 10 I was hoping it would fix it completely and it hasnt. The 2 days after my infusions are magic though - my rheum thinks this is because of the cortisone given with the infusion though, rather than the medicine. I take 2 or 3 gastro stop (Loperamide, an OTC diarrhoea medicine) every day, and they help to slow things down.

Anyway, good luck to everyone. I hope we get the answers and the treatments or medicines we need. It is a horrible disease and it's exhausting and painful with so many crappy symptoms to deal with every day.