Crohn's Disease / Ulcerative Colitis Community
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Avatar universal

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

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...
15 Responses
501944 tn?1224059621
My prayers are with you! I'm sure lots of Crohn's patients can tell you they felt the same way. The not knowing what was wrong drives you crazy. I felt like if I just knew what was wrong then I could face it head on but not knowing what to do for all my symptoms was driving me crazy. I have gotten some sores on my tongue and I have heard its common with Crohn's and you can get them in your upper GI where the sores go down your throat. Thank God I haven't had that before.
I have taken "Magic Mouthwash SUS 240ml" for the sores and "Nystatin 100000/ml SUS" for Thrush.  
There are so many symptoms of Crohn's. I didn't even realize half of the symptoms I was having were Crohn's symptoms.
Have the dr's given you a Promethius test yet?
Avatar universal
No not yet. I just started seeing the GI doc (only seen him once) because i have just been trying whatever doctor i can think of to visit, and I was not having a flare up at the time of my visit. So he just had me take some blood test, and told me i have Crohn's antibodies, so the next step is the colonoscopy/endoscopy, which i will have done in a week...

What is a Promethius test?
Avatar universal
Hi - Crohn's can manifest itself from mouth to anus, and rarely, affect the eyes. It is quite a sneaky, insidious disease and can be difficult to diagnose as not everyone gets the same symptoms.

I have had Crohn's for 38 yrs and never had any problems in my mouth due to Crohn's. However, I did get really bad ulcers in my mouth when having FEC chemo for breast cancer. The oncology dept supplied me with Cordosyl mouthwash and Nystatin lozenges, which did help. Bonjela gel also helped.

Hopefully, the colonoscopy/endoscopy will provide a definitive diagnosis from the biopsy tissue they will take if they see any abnormality.If you unfortunately have Crohn's, you can then get onto appropriate medication.

Just a thought, as you don't seem to present classically for Crohn's (severe diarrhea, weight loss, lower right side abdominal pain etc.) have you seen a dermatologist?   I have twice had cold type sores starting on my nose and rapidly spreading up my face, eyes and forehead. First time, I went to a specialist eye hospital, as my eyes were closed with the swelling and scabs, and was told it was herpes. GP next day told me it was impetigo - both so wrong!  Second time, I had a fever with the same sores,and went to A&E by ambulance - duty doctor told me it was Sweet's Disease (which one can get when having Crohn's), which is very rare and it seemed half the doctors in the hospital came to look at my face - my gastro came to see me on the ward, took one look and said:"You have erysipelas!"...What?, write it down for me doc.  Next day I saw a consultant dermatologist in the hospital and he confirmed the dx by looking at my face, but did a biopsy to be sure. The treatment was antibiotics.

Hope the tests go well and you can get a proper diagnosis.
Take care,
Liz in England.
Avatar universal
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.
333123 tn?1246288667
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...
Avatar universal
do you know why you get a big lip in Crohn's please?
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