can Crohn's disease only manifest in your mouth/lips?

[JLanee]

Hello. I am a 23 female who might possibly have Crohn's disease (my colonoscopy/endoscopy is scheduled a week from now). I do not think that i have any other symptoms of the disease, other than some abdominal fullness, and bloating every now n then, however i have these horrible unexplained mouth issues. I get a whole lot of large, painful sores in my mouth, and my lips swell (mostly the bottom) and i get these huge ulcers (not painful) on the outside of my lip, that have pus, and scab over, and it lasts about 2 weeks at a time and i look like a leper!!

I have been reading about orofacial crohns and i know it causes swelling, but out of all of my research, I have not run across anybody who seems to get open sores on their lip like i do... This has been going off and on for abotu 3 years now, and none of my doctors have figured the source or reason for this. The GI doc told me my blood test came back with some antibodies for Crohn's... but i am so discouraged, and i feel like no one will ever be able to fix me, since they havent figured it out thus far...


Has this happened to anyone else out there, or should i kinda just expect Crohns not to be my diagnosis... I'm kinda losing hope here, and I just want someone to figure out what is wrong with me so this can all be managed...

[JessParkman]

Your lips sounds just like mine... I had tests over the years to check for cold scores all came back negative!
They have confirmed it is now Crohn's in my lips and looks like it maybe in my nose as well.
I have Crohn's in all the normal places... With all normal syptoms!
What have you found best for your lips? My'n our out of control at the mo getting one after another. I've found kids mind free toothpaste doesn't seem to agrivate them like mint toothpaste!
Good luck with it all Jess x

[markscool]

hi i found out i had crohns from dentist cos i left my wisdom teeth in to long when they said i should of got them taken out by time i went back my mouth was so swollen from wisdom teeth biteing side of mouth plus gums hanging half way over my teeth and oulcers dentist nurse said it looked like i had crohns of the mouth wich she learnt at school once i got them out still had problems from my other teeth biting my gums for years only thing that made it better was predmisalone tablets but i would be on of them for years then at age of 22 to my top lip blew up then had to have plastic surgery on it then i went on imuran never had it flair up bad again now these days on 6mp and only on predmisalone for no more than 4 to 6 weeks a year last few years never have gut pain

[Maya1986]

Hi Jane,

I just wanted to message you in regards to your post, where you had mentioned you get only orofacial symptoms of Crohns, I am EXACTLY the same. I only have swelling of the lips and have had these exacerbations since I was 12 (I am now 24). The patterns of swellings have changed over time. Recently I've been getting it mainly on the corners of my mouth, with lots of cuts. Is this the same for you? My swellings have been linked to my eating gluten, dairy, eggs and yeast, so by avoiding these I have been able to reduce the severity and frequency of my swellings. Have you linked it to your diet?

It really has been interesting to read your post, as I felt that my presentation of Crohns was so atypical that I was starting to believe that the lip swelling may be due to something else.

It would be great to hear from you.  I hope you have been keeping well.

Kind regards,

Maya

[fran965]

do you know why you get a big lip in Crohn's please?

[Hank0303]

When I first realized something was really wrong with me, it was because I woke up one morning with the left side of my bottom lip swollen so large it covered my top lip.  My entire mouth was bright red on the inside.  I could not eat anything more than cream of wheat and oatmeal because of the pain.  I may have had one or two ulcers inside, but the only thing outside was the swollen bottom lip.  I went to periodontists, ear nose and throat drs, etc.  No one knew what was causing it.  When I started having stomach problems, we finally found a great GI about an hour away from us.  All the local docs said nothing was wrong with me.  This dr took one look at me and said, "I think you have Crohn's, but I want to do some tests to make sure".  We were thrilled just to have an answer!  When he did the colonoscopy, he also took a small biopsy from the inside of my bottom lip (on the other side than the swollen side).  Everything came back positive for Crohn's.  They just put disolvable stitches in my lip, and it was no big deal.  Maybe you could ask your dr to biopsy your lip.  Even if it is not crohn's, at least you'll have an answer to the sores.  As soon as they started me on the meds, the swelling and inflammation in my mouth disappeared.  And, through all the flares I have had, it has never returned in my mouth.  Good luck to you!  Let us know what they find out...

[margesimpson]

Hi, I have got Crohn's disease in my mouth only.  My only sympton is a swollen top lip and swelling in my gums which has been ongoing for about a year. It started with stress.  My doctor tried me on elemination diet firstly but it didn'y work.  I am now on Azathioprine which does work and I am now looking back to normal.  My mum had colitus and they say it is in your genes but it does to me seem very bizzare.  I however do feel lucky I am well in my bowels for now and my specialist says it may never affect them.  So hopefully this might be the same for you.