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...
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?
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...
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.
Liz in England.
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.
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...
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.
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
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
hi i have crohns of the lips also known as OFGA oral facial granula amatosis i get kenacort steroid injections directly in 2 lips mixed with local aneasetic mum usually gives me a local sedative (mersendol forte) it helps me stay calm and she also puts emala cream which numbs them.
If u leave it 2 long with out the injections the tissue of the lips become woody. The tissue changes form & u can't get it back and i belive that OFGA is caused because of stress and pressure and some times can be food realated
My son has oral crohn's (ofg ) as well as crohn's of the bowel. There is a group on facebook called oral crohns disease (ofg) if you would like any support or to share your experiences with others.
For my son, food is the culprit and an elemental diet works for him when he is really bad but obviously he doesn't like it!
Infliximab/ remicade also worked for a while but sadly no longer.
How long do you find the steroid injections control things for?
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