My daughter has an appointment at Birmingham CoE tomorrow, it has taken us two and a half years to get to this point, which I know is quick compared to some.
She has had a very difficult couple of years, after reading your posts not a lot of people mention bowel pain which is awful for her, she lost five stone in three months at the start and is now on massive amounts of Steroids every day does anyone else have similar ? and what medication are you on, how long did it take to help.
Thank you in advance. I hope tomorrow she gets a definite answer and will then get help from here herself.
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Jules6663
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I am sorry to hear that it has taken so long to get to where you both are now. We aim, in the Society, to do something about this recurring, unacceptable, situation within the UK. The Birmingham CoE will serve you well I am sure.T
2 years post diagnosis and still no referral to COE. I complained to the NHS Trust and they instructed my rheumatologist to make the referral 6 months ago. He still hasn't done it. I have asked 2 GPs to do it but they say it's not their responsibility. I'm at a loss what to do next! Any suggestions would be welcome.
I would write one letter cc'd to both GPs and the rheumatologist, attaching the referral instructions from the Behcets Syndrome Society website, asking them for the precise reason in writing why none of them have referred you.
I know exactly what your going through, my daughter became very unwell with major abdominal pain, diarrhoea, mucus and blood. At first I was convince it was Crohn's disease. After almost five years and a fight against her medical profession i manage to het her into the CoE in London where she was diagnosed with behcets disease. I was diagnosed with it just a few months earlier. She's still has terrible abdominal pain and she is very slim as they also notice her weight. They said she most likely have ulcers in her bowls and that's what's causing the pain, diarrhoea, mucus and blood. They are now keeping a very close eye on it doing stool samples and at some point she will be having another endoscopy and colonoscopy. She was put on azathioprine recently and colchicin this has been a great help. Good luck with ur appointment
Yes she’s exactly the same been red lighted into hospital 22 times, had one professor who is supposed to be the best in the world, who told her she had an eating disorder. Luckily the brilliant Ed Sung and Phillip Perkins solved it within 2 weeks with a positive for Vasculitis. Hopefully today we get a definite diagnosis and get her on the right medication. She’s been so brave only 19 when this started.
Oh dear, but I know how you feel, I also had to fight to get her to the CoE. I was called paranoid and over reacting mother, all kind of stuff. But I did not give up, insted I researched and research till I personally found the CoE, and even then they refused to do a referral. But when I became extremely unwell with same symptoms I refuse to see anyone else and demanded to be referred to them. I was diagnosed last year October and she was diagnose this year in February. And you are absolutely right they are very brave. I know my daughter became very unwell when she was only 3 years old. Good luck today and keep us posted
HI there- im in usa, so different medical procedures here.
Did crohns and celiacs get ruled out? Ulcerative colitis? Stomach ulcers?
I used to have constant diarrhea, to the point where I thought I had food poisoning on almost a daily. In the height of my worst flare, I had lost 20lbs in under 3 weeks (im 5'2 and was 130lb at the time, healthy) I essentially went to very bony and weak. I was also having severe thrush at the time so I started the candida diet (which is carb free, sugar free) and started to feel better after 10 days. Turns out I was sucrose intolerant, and had been poisoning myself for years and I guess it finally caught up to me at my most sick. Anyhoo, I had kept a food diary, and everything (it was A LOT, if not MOST food) that made me sick had sugar in it. So once I cut the sugar, everything fell in line. I got better and dont flare like I used to. The inflammation has gone down, Im healthy now (took about 1 1/2 -2 years). Sugar is incredibly inflammatory. Theres a few others on here who have changed the diet towards whole foods, no processed, a mediterranian type diet and have seen excellent results too.
That was the only change i made after 3 months of pure hell, and it saved my life. I was on 15 different meds, no steroids as they were not offered to me at the time. Now I am on half dose of Colcrys which I plan to discontinue next year.
Eat meat, fats, veggies (work in fruit later). good fats include, olive oils, coconut oils, avocado, fatty salmon. Do butter and heavy creams (if lactose can be tolerated) cheese too.
Drink only water.
Get all the sleep.
I hope this helps and sending all the best to your daughter.
Thank you all for your reply’s, we now have a definite diagnosis. Very upset today but at last we have an answer. I’m sure she will be on here herself soon. Good luck xx
I can Imagine hearing the diagnose can be very upsetting and a mix of emotions. I have no doubt she will have the best team looking after her now. And soon she will start to feel better. I know this from experience. Best of luck. Xx
Birmingham CoE have diagnosed it today, lovely lovely people. Our own Rheumotologist said a year and a half ago he thought it could be but the IBD specialist held things up by ignoring the Rheumotologist request to take her to theatre and have a proper look. He told her she had an eating disorder !! We then changed IBD and hit the jackpot with Dr Sung at Nuneaton who took her to theatre within two weeks.
It’s been a shock even though we were half expecting this outcome she’s on a flare at the moment so been very poorly for three weeks now awaiting test results to start treatment.
I just want to give you some hope. I have Behcet's colitis which has been awful in the past. But now that I'm on really good treatment, have been for 15 years, the symptoms hardly bother me at all now. I'm sure it will take a while to get over the shock but I want to reassure you that your daughter will get better with good treatment. Take care x
Thank you for some positive thoughts, we are still waiting on bloods to check her liver is good enough for the treatment they want her on. She has been on high dose of Pred for a year and a half so atm are getting some breathing space to at least get us used to the idea. She's also waiting for an urgent chest scan to check for clots. Good luck stay well.
I’m so sorry to read about your daughter and your health issues. I’m so proud of your MAMA BEAR instincts! You know God gives us that for a reason and it’s to fight for our kiddos and YOU SHINED!!
I have been suffering for 28 years mostly with random shingles like rashes (even diagnosed shingles by multiple doctors) and was just suggested this year by a Retina specialist when my vision had issues to check into behcet’s. I didn’t even know this disease existed!
But thankful she suggested this because I have a lot of the symptoms. Unfortunately all my tests the rheumatologist did came back normal ( I wasn’t in a huge flare at time of tests)
Last 3 weeks I have been have tummy issues and had a MRI/MRA done. The did find i have something going on in my Bowels. So now I’ll be seeing a Gastro Dr mid April. He is sending me to do some more tests before this appointment.
Did they confirm it’s Behcet’s, Vasculitis or Crohn’s?
My sister has had Crohn’s for 20+ years and it’s in remission now.
I am not sure if these are similar on a MRI/MRA but look different when a scope is done.
I have tummy pain, burning sensation and jabbing, stabbing almost feels (raw) some bowel issues (quick moves to bathroom) but since this is been there for 15 years I was told it was nerve pain/damage or scar tissue from previous surgeries, so I have just pushed through the hard days and would just push to stop the pain or soft food/ liquid diet until it felt better.
The only meds I am on now are Trileptal for the neuropathy I had in my head and trigeminal nerve. This seems to be giving me some relief. I am eating a very strict diet, as Rooser1 suggests I’m sugars/dairy/gluten free. I am dairy free as I had an IgG allergy test and it came back that I may have a casein allergy. The doctor suggested I stay off for a while and see how I feel then slowly add it a little and see how I feel.
(I love cheese, use to drink bulletproof coffee which has MCT OIL and grass fed butter) delicious but it’s been 3 months so I’m slowly getting us to it! So hard to adjust your go to or loved recipes to different foods. I’m 46 years old and have those famous family recipes lol
Mexican, Italian Foods ( my favorites) are tough but I’m learning to adapt! 😏
I would like to follow your posts to see how you both are and how things progress.
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Bowel symptoms & Genital Ulcers (please share info)
Has anyone had any problems with their liver due to the behcets disease?
Stomach Problems
Skin Problems
Leg problems
