Mucositis? (not just ulcers, but erosion of mouth)

Mucositis? (not just ulcers, but erosion of mouth)

I recently had a colonoscopy for GI involvement but was surprised to see that most of the pictures were of the roof of my mouth, not my colon. In my 5 seconds with the dr after he told my I have mucositis as a part of Behcet's and showed me these areas around the roof of my mouth that looked like small, shallow craters. I never looked there before, and my rheumatologist at my visit a few days before said "my mouth looks fine" so it's not easy to see unless you have a good light and angle. Curious if others have this as well as a constant sensation that you burned your mouth on something hot. Gets pretty annoying because it hurts to eat (in a different way than the typical apthous ulcers) plus I can't taste anything.

I asked him what to do and he said "just treat the Behcet's"

6 Replies

  • If you make your post viewable only to the BD community you may get some responses.

  • Hi! I actually thought a lot about locking the post, and the reason that I didn't is because I want the thousands of people with Behcet's that aren't in this group, but are looking online for some answers, to see that mucositis may be associated with Behcet's. When I googled mucositis and Behcet's before this post for my own info, nothing showed a correlation. But after this post you can see that there are some people with these symptoms, and you can even see the pictures. I wish the pictures weren't so big, though.

    I also understand if others feel differently and would prefer that I lock the photos. If so, feel free to send me a note.

    Thank you!

  • I do! Really badly! I have literally only just been diagnosed with Behcet's but yes, I get this very severely in my mouth. Usually it starts as sort of normal ulcers, but then goes mental and erupts across my whole mouth and often up onto my lip.

  • Thanks for your reply and I'm sorry you also deal with this! The good news is that it's not permanent, though ;-)

  • Fair enough. All I will say then is that I have erosion of roof of mouth but have been told it is not Behcet's.

  • Yes I get this as well and can totally relate to that feeling like you've burnt the roof of your mouth on something hot. I've got it at the moment in fact along with some pretty nasty ulcers. Swilling your mouth around with a little salt dissolved in a half pint of water seems to help a bit.

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