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Crohn's in the mouth

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Crohn's Disease
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Posted Yesterday 7:47 PM (GMT 0)

I have been told that I now have crohn's in my mouth, does anyone else out there have this?  I am getting really annoyed with this stuff.  I have been diagnosed for three years now and every fall, it never fails, I end up having a flare.  I do not respond to medicines the way that my doctor wants or expects.  Am I alone? I have been thinking about trying a special diet in hopes that with the medicine it will work.  I have heard stories of people who only need the special diet and no meds, so maybe it will work? No one else I know has crohn's so I feel all alone...please help :(

Posted Yesterday 7:58 PM (GMT 0)
I've never had ulcers in my mouth that were associated with Crohn's, but I hear it can happen. I'm sorry it's been a regular feature for you.

There are plenty of Crohn's people on this forum who would be happy to help. You should introduce yourself as a new member and tell us your story.
Posted Yesterday 9:27 PM (GMT 0)
That's the one part of my gi tract I can't get a definite diagnosis of Crohns. Although I do get ulcers on occasion, mostly due to eating sugary foods or milk chocolate. When I'm flaring bad, I seem to get them regardless. I've never had luck with any meds for this part of my CD other than Remicade which I no longer get. Some folks use a mouth rinse to cut the pain but only time seems to heal mine.

What meds are you currently on?

Oops, almost forgot to welcome you to the forum.
Posted Today 12:36 AM (GMT 0)
Welcome to the forums! no xp with it in my mouth, but people on these forums are very helpful and supportive and i'm sure someone will post with some tips to try out.
Posted Today 12:49 AM (GMT 0)
welcome to you, i have cd really bad in throat esophogus and cankers, I've had er endoscopies to extract food that got stuck because my throat was swollen, no, my gi said that cd is from mouth to anus, butwhen he scopes me it show not much, but when I started rem that is the first part it helped was my swallowing, it was huge relief, I was afraid to eat only soup or blended stuff, but rem has helped small bowel somewhat not evan near to remission, but the mouthwash is ok but it is for sure bandaid, I found that magic moouth wash works for 10 min's, I gargle with epsom salt and warm water to help heal canker's, the other stuff is just lydocaine. cankers have to heal from your gut, if you know what I mean

Posted Today 1:17 AM (GMT 0)
Thanks guys for all of the information! It is helpful even though it doesn't sound too good. I did the whole salt water thing, perscription rinse, and peroxide, nothing helped. I have a docs appt on monday, so hopefully he will be able to help me out then, but its a long time to go when you can only really eat soup and cream of wheat, with the occasional mashed potato.

I have been on Pentasa since I was diagnosed in Dec of 2007. I am taking azathioprine 75mg and folic acid along with that. I also do a once monthly injection of Cimzia. I was taking Humeria but had an alergic reaction to it. I have taken the steroid entacort, but an now currently on prednisone, I took it for 9 months this past year and was soooo swollen for the entire time. Needless to say I am not excited about going back on it. My mom really doesn't want me to go on rem because that is what my grandfather was on that caused him to get an infection which he ultimately died from, but I guess I will have to do what I have to do.
Posted Today 1:34 AM (GMT 0)
Just got medicine today for my mouth! I'm in the middle of a bad flare and when that happens I get mouth
involvement. The best medicine I've had is a prescription mouthwash, the one I was given today is called
Dr. Popovic. It contains, nystatin, steroid, antibiotic and benedryl. I've only had 2 doses today and already
I'm getting a little relief. I wish you luck!!
Posted 12/1/2010 5:28 AM (GMT 0)
i get sores in my mouth on and off all the time- mostly on my tongue. they suck! haven't found anything that helps, but they definately show up when i'm flaring...
Posted 12/1/2010 3:46 PM (GMT 0)
keep in mind that apthous ulcers happen in normal people too
Posted 12/1/2010 5:17 PM (GMT 0)
The CD in my mouth is not just down to ulcers, although I have a few little ones in my throat. It's more
of the overall inflammation, including my tongue, gums, inside the cheeks and so on. The doc said it was
a mess. It burns like the dickens. Makes the little eating I do, a little more difficult. Pure joy:(
Posted 12/1/2010 5:45 PM (GMT 0)
yeah, the ulcers I could deal with, its getting to the point now that my gums are so swollen from the ulcers that I cannot open my mouth all the way to brush my teeth. I am getting little blister on my lips, possibly fever blisters, and white spots on my tongue that looks like a yeast infection, but there is almost no yeast in my mouth. As long as I keep food and drinks only on my tongue, I am usually pain free.....much easier said than done.
Posted 12/1/2010 5:49 PM (GMT 0)
mf, have you tried the medicine I suggested at the top of the post. If you haven't, I would really think about
asking your doctor about it. It takes time for it to work, but it does help!!
Posted 12/1/2010 5:59 PM (GMT 0)
Vicky, not yet, but my appt is on monday. I have the name written down and I plan on asking him about it then. Thanks for the great info!!!
Posted 12/1/2010 6:30 PM (GMT 0)
If you can't get the one I suggested, there is another one called Magic Mouthwash. I think they are very similar
to each other. Both are prescription only. Good luck!
Posted 12/2/2010 12:02 AM (GMT 0)
my mouth, gums tongue inside of my lips, can be really painful and very hard to eat, I know exactly how you feel, so sorry, really so sorry.

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