Pipp1 - Continuous stomach pain

[pipp1]

Hi

My daughter is suffering with a lot of symptons relating to Behcets, mouth and genital ulcers, joint pain, floaters in her eye, headaches and stomach pain, no inflammation has been found to date, this is being investigated at the moment. She has been struggling with a lot of stomach pain especially in her right upper abdominal area and has been in hospital a few times with accute pain in her right upper area of her stomach just below the rib cage . She has had camera investigations for stomach ulcers and there is no sign. It has been suggested she has her gallbladder removed to see if this would help prevent these attacks. Has anyone suffered from accute stomach pain which has hospitalised them on a regular basis due to behcets? Thank you

[Katebbb]

I suffer with stomach pain due to bechets. Also the doctors could never find anything in my blood to suggest I have bechets either. It’s really hard, because it’s such a rare disease doctors don’t know a lot about it so never know what to do when I’m flaring. The way I got diagnosed was having a mouth ulcer and genital ulcers at the same time. Unfortunately you have to really push doctors to try and get a diagnoses but it sounds to me like she definitely has it, when she’s flaring it sounds like it’s effecting her stomach more than anything

[Katebbb]

Also if she is effected by really bad headaches take her to a&e because that’s what happened to me and I had neurobechets

[pipp1 in reply to Katebbb]

It's so frustrating, she is white and 21 so didn't know whether this disease would apply to her and we seem to have been going round in circles. It's so good to be able to discuss this. Thank you

[glad2behere in reply to pipp1]

I had one wazzock of a SHO Doctor question me about my dx of Behcets, he told me I couldnt possibly have it because "You dont look Egyptian" stupid man, OK its more prevalent in some ethnic groups, and Im white and western., BUT GIVE ME A BREAK! Have since seen a useful eye specialist who had once worked in Jerusalem at a specialist unit with lots of Behcets patients, no problem with him, he updated my meds to include hydroxychloraquin. Just as well cos weve had no consultant rheumatologist on regular staff here for 4 YEARS! Im now begging for referral to Behcets centre at Dudley Road Hospital Birmingham

[Pixie013]

I am sorry your daughter has been so unwell. Yes, I have experienced this. The gold standard for testing/diagnosing gastrointestinal Behcet's inolves biopsies as these can detect inflammation undetectae by the naked eye.

All the best to your daughter.

[pipp1 in reply to Pixie013]

Thank you will try and get referred so we can get some answers.

[glad2behere in reply to pipp1]

Yep, thats what they did to me, skin biopsy off a lesion on my leg when I was riddled with ulcers, very sudden, they thought Id got sepsis, so wouldnt treat for behcets in case they were right as steroids could have led to me dying of an infection, They put me on an antibiotic drip for days and the behcets ran out of control inside and out. Eventually they stuck me on steroids after the biopsy and I slowly got better. Please enusre you get someone who knows about behcets to treat your daughter, there are a lot of people who wing it. Behcets UK is a brilliant source of support and proper information. good luck z

[Lara1]

Really sorry to hear.. I have had upper right abdomen pain right under the rib cage since 2006. Since last year I also have pain on the left side just below the rib cage. Both types respond partially to colchicine and methylprednisolone, but neither ever goes completely away. No test done so far - MRI, ultrasound, endoscopy, blood tests, have ever shown anything abnormal although the pain can be excruciating. It’s one of the most difficult to manage symptoms for me.

The pain on the left side is triggered by alcohol, sugary foods, physical effort and it seems similar to chronic pancreatitis pain which can have an autoimmune cause. But since I don’t have the abnormal blood tests that go with pancreatitis, it’ never been diagnosed. The one on the right is a total mystery.. it did get worse after the hep B vaccine I had in 2011.

I wish I could help more, must be very difficult for a child to deal with this. If I ever find out how to test for or treat this I will let you. And please keep me updated on how your daughter deals with it.

Lara

[Lara1 in reply to Lara1]

There is one test that shows how the gallbladder works - I think it’s called the hida test or hepatobiliary scintigraphy. They give you a strange drink that makes your gallbladder contract and then they measure how long it takes for it to empty. I had it in 2014. I thought I was going to die from the painful cramps! I had to have a Solumedrol shot to get the pain under control. The conclusion was there was nothing wrong with my gallbladder! Not not sure if I would recommend this especially for a child, but.. No gastro ever mentioned a gallbladder biopsy. In my experience it is hard to find a gastro specializing in autoimmune diseases of the tract but my advice is to find out if you can.

[pipp1 in reply to Lara1]

Struggling to know what to do best, she is 21. It does seem she has Behcets. We have a very good consultant who is on our side but since her last attack in hospital where it was so painful she couldn't stand and had sickness and diarrhoea another consultant has actually done a hida scan and her gallbladder is functioning on the low side of normal and has suggested a gallbladder removal may help 50/50 chance. She is so desperate to get rid of the pain she is going to have it as she has no other diagnosis. Colchicine has been tried but hasn't worked. Going to push to get a diagnosis. Thank you.

[Lara1 in reply to pipp1]

Hello pipp1, how is your daughter doing? Has she had the gallbladder removed? I think it’s really important to treat the gallbladder inflammation because if left untreated, its poor functioning will eventually make the pancreas also sick. Which is what I’m experiencing now.,

[pipp1 in reply to Lara1]

Hi Lara1. thank you for asking. She had the gallbladder removed which seem to have taken away some of the pain. She has constant pain with stomach and joints and at the moment is in a really bad way with it. We have now got an appointment with the Behcets Hospital but not for a few months, unfortunately no one wants to prescribe anything to see if it helps as they dont know what is wrong yet! But dont know if she can keep coping with the pain she is in. I'm beside myself with worry. I must say she takes manuka honey everyday (full strength) and it seems to have helped her mouth ulcers immensely, so am looking at maybe trying something like tumeric for her joints but not sure what to try for her stomach but hopefully she will have a diagnosis and they can then relieve some of her pain. Thank you once again.

[Lara1 in reply to pipp1]

Hi pipp1, I am with you on this.. I have a daughter too and I suspect she has Behcet’s. She is only 4 and sometimes she wakes up in the middle of the night crying because of joint pain. So far it has gone away on its own but I would be devastated if she was in constant pain.

I’m glad though the gallbladder removal has helped your daughter even a bit. I have been speaking to several rheumatologists specializing in gastro BD. They all recommend either Azathioprine or the biologics - i.e. Adalimumab if aza doesn’t work. Myself I will probably try azathioprine in the next few weeks and will let you know if it is effective on the gastro symptoms. Colchicine and methylprednisolone also help with the pain although neither stops it completely for me. If I understand correctly your daughter has not taken any medication for Behcet’s yet?

[pipp1 in reply to Lara1]

Hi. She is taking colchicine but not sure how much this helping. She struggles to work which she finds very frustrating. I am sorry to hear your daughter is suffering as well. Hopefully once you start taking the Azathioprine you will see some improvement, yes please let me know how you get on. All the best P.

[Lara1 in reply to pipp1]

Hi pipp1,

I have taken azathioprine for two weeks only. I had to stop it because it was making my left side abdominal pain much worse. It’s such a pity because it’s been a revelation when it comes to my neuro symptoms. It either made some of them go into remission (like headaches) or really reduced them. It also worked wonders for my horrible fatigue, body aches and pains and just inflammation in general. Everything except abdominal pain! I don’t understand it. I’m seeing a new gastro next week hoping he’ll figure something out. I’m pretty convinced though that it has to be some other immunosuppressive drug. I will let you know. How is your daughter doing?

[Niki318]

Hello! I suffer pretty significant GI pain with my Bechets disease. I even have digestion issues, especially when it comes to processing fats properly! It can be a challenge during flare ups. I get upper and lower abdominal pain, bowel movement issues, and menstruation issues.

[Niki318]

I also experience eye floaters, eye inflammation, and pretty severe headaches!

[pipp1]

Sorry to hear you are suffering with these symptoms, have you been prescribed any medicines to help or is there anything that helps with the pain? as yet we are waiting for a diagnosis but would be interested if there is anything that eases your symptoms. Thank you