01-09-2013, 03:24 PM   #1
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Location: Victoria, British Columbia

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Bechets anyone?

I was diagnosed 13 years ago with ulcerative colitis, and then re-diagnosed two years ago with crohn's colitis... and now my gastro is sending me to my rheumatologist to be tested for Bechets... sigh. Anyone out there who has walked this path? I'm feeling pretty stomped on about now. Can I have BOTH of these at the same time? Along with all the other usual side dishes I have with Crohn's I really didn't expect more...oh, and I was tested previously for vasculitis (inconclusive). I have been off remicade for about 6 months now (actually my gastro took me off all my meds) and am flaring up. thinking Humira is next. /
"In the depth of winter, I finally learned that within me there lay an invincible summer."
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01-09-2013, 03:47 PM   #2
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fosterschick's Avatar
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Location: Hull England

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Hi sorry u are feeling so bad , check out allieinwonder in t undiagnosed club , she will be happy to help , always helpful to me and she has walked this path xx

01-09-2013, 03:57 PM   #3
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I believe you can have more than one major illness sadly, but first I would look at the evidence for your CD diagnosis, and why the GI is thinking Bechets, because IBD can cause many of the same symptoms that Bechets does, joint pain, eye problems etc.

Yes ailenwonder may be able to help, I have tagged her so she should see this.
2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
01-09-2013, 05:19 PM   #4
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Thank you both for your responses and as well for tagging ailenwonder. I was diagnosed with crohn's colitis after hospitalization and surgery for fistulae and abscesses. I have many extraintestinal manifestations including arthritis, iritis, oral ulcers (sometimes right down my throat) and what seems to be hidradenitis suppurativa (well, that's the short list but you get the idea lol). I have run the gamut of meds and am left with Humira as the only untried one. Maybe he is just grasping at straws at this point? Sometimes you feel like the patient they just don't want to deal with anymore. As soon as he took me off the remicade, I immediately developed iritis. But I had been flaring during the last six months with remicade anyway so who knows.
01-10-2013, 04:19 AM   #5
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Join Date: Oct 2011
Location: Sheffield, UK
Hi blackbird, you definitely need to speak to Allieinwonder like the others have said. im pretty sure she'd find it interesting to speak to someone going through the same thing.

all the best, make sure you keep us updated xx
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Alternating diagnosis of:
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01-10-2013, 04:01 PM   #6
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Hi Blackbird, welcome! Yes, as others have said, I am diagnosed with Behcets. I was just diagnosed a month and a half ago after chest pains put me in the hospital. If you want to read my entire story from IBS to Behcets it is in this thread: http://www.crohnsforum.com/showthread.php?t=44354

Here is the thing about Behcet's....there is no test for it. The criteria for being diagnosed with Behcets is oral and genital ulcers (more than three a year), skin involvement (ulcers/rashes), and ruling out similar diseases like Crohns and lupus. http://www.behcets.com/site/pp.asp?c...OCJrH&b=260549

There is a gene they have found in human DNA that can signify Behcets, but it isn't completely accurate.

When you were diagnosed with Crohn colitis, they diagnosed via a biopsy right? The biopsy would not be the same if it was Behcets, it would be negative for crohns.

The good news is, if you somehow did have Behcets on top of crohns, you will be taking the same meds for both. Both are autoimmune, both effect the digestive tract.

Behcets is a nasty beast though....right now mine is attacking the blood vessels in my joints, intestines, eyes, skin, and even my heart. I'm on pred but they put me on way too low of a dose. Yuck!

I hope you get some solid answers soon! Feel free to ask me anything else that might come to mind.
DXed with Behcets disease December 7th, 2012. Behcets disease is a rare autoimmune disease of the blood vessels that can mimic Crohns.

DXed with Polycystic Ovarian Syndrome (PCOS) November 20th, 2017.

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02-04-2013, 12:08 PM   #7
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Thank you allieinwonder. The Crohn's diagnsosis replaced a Ulcerative colitis diagnosis, The re-diagnosis was based on the abscessing and fistulas that put me in the hospital several years ago. I think he is wanting the test done as I also manifest iritis, arthritis, skin issues, and have had some severe headaches along with sinus inflammation (they tested me for vasculitis years ago, which came back inconclusive). Right now I am managing the symptoms without the heavy drugs and with the aid of natural supplements as well as some acupuncture. I do feel though, that it is only a matter of time before the flare will become too much and I anticipate being put on Humira as it is pretty much the only drug left for me to try. I really appreciate you responding to this thread and I am sending much positive energy your way.
06-12-2015, 01:56 PM   #8
Join Date: May 2015
i was diagnosed uc in 1978, age 28.
my brother diagnosed 7 years ago hydradenitis, age 44. symptomatic age 16.
other brother diagnosed 6 years ago behcets, age 56. symptomatic age 21.

looking to get a dna study of our family aggregate of auto immune diseases.
also want to know if our father exposing us to plutonium, americium, beryllium, and more, could have triggered these. he ran a nuclear weapons plant when we were young and was exposed to nuclear soup every day. he brought home nuclear dust on his clothes.

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