mouth ulcers - active disease?!

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Regular Member

Date Joined Dec 2009
Total Posts : 65
   Posted 5/14/2010 9:57 AM (GMT -7)   
Hi guys,
I've been diagnosed with Crohn's for about a year now (and my GI and i also think that i have an element of IBS now to top it all off!) my crohn's has been pretty stable for a few weeks now, thanks to azathioprine!!
However for the past few days, i've noticed that i have alot of mouth ulcers and this afternoon it seems that every time i open my mouth/ eat that i find a new ulcer!! i counted about 15 on the right side of my mouth before! i don't have any other symptoms that would indicate active disease: no diarrhoea, weight loss, pain, ect... and so my question is this: can we get alot of mouth ulcers whilst in remission or would having this many signal the start of active disease?!

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/14/2010 10:23 AM (GMT -7)   
I hate to say this, but I am wondering if you are starting to flare. I would call your doc to discuss this new development. Big hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Jul 2008
Total Posts : 384
   Posted 5/14/2010 10:51 AM (GMT -7)   
Since crohn's can affect anywhere in the digestive system from the mouth to the anus, my guess is that you are starting a flare. When I was younger, I would also get the mouth ulcers, which I know are extremely painful. My Dr. would start me on Pred which would clear them up. Not having the diarrhea and/or pain could just mean you are not actively flaring in the large/small intestine at this time.

Contact your Dr. and let him know.
Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, calcium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!

Veteran Member

Date Joined Mar 2005
Total Posts : 1289
   Posted 5/14/2010 6:17 PM (GMT -7)   
i get painful little sores/ulcers on my tongue when i start to flare...painful little suckers.
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.

SSG Mommy
New Member

Date Joined May 2010
Total Posts : 6
   Posted 5/14/2010 11:33 PM (GMT -7)   
I agree with everyone else that you're probably starting to flare. I had them from my mouth all the way down my throat. But I got a couple of in office shots of steroids and was on prednisone at home for a couple of weeks and they cleared right up! No biggie (after the fact).
SSG Mommy
Diagnosis: Chrons Disease (2005)
Current Meds: Lialda, Humira, Nexium, Flagyl, Lomotil

Regular Member

Date Joined Dec 2009
Total Posts : 65
   Posted 5/15/2010 3:30 AM (GMT -7)   
thanks everyone!
it not what i wanted to hear since i've actually been feeling pretty good for a few weeks now.. but i do agree, i should definately talk this through with my Dr!!
I'm happy to say that i dont think i got any more over night, but i did coat my entire mouth with bonjela a few times last night! I'm also getting pains in the back of my throat. It feels like i've got a bug and im a bout to get ill, but it has been there for a few days (along with the ulcers) and hasnt become any worse or any better. i'm wondering if this is a coincidence or if there could be something going on there too?!
i've got an appointment with my GI on friday and so i'll ask all of my Qs then. I really hope i'm not starting to flare as it was only a week ago that i had a scan and they said my intestines looked remarkably healthy!! I'm so sick of this rollercoaster disease, but i know i should be thankful as alot of people have it alot worse than me!
Thanks again guys

Regular Member

Date Joined May 2010
Total Posts : 88
   Posted 5/15/2010 3:07 PM (GMT -7)   
I agree with everyone you should definatly call your doctor and let him know whats going on, as I noticed with alot of the people that replied to your post, I also get mouth sores right before I really flare up.
imagination is stronger than knowledge -- myth is more potent than history -- dreams are more powerful than facts -- hope always triumphs over experience -- laughter is the cure for grief -- love is stronger than death.

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 5/15/2010 4:08 PM (GMT -7)   



        My last Major flare, which was back in the Autumn of 04 the accursed mouth ulcers were my first symptom, along with peri-anal issues. It turned into a pretty mean flare, too. The amount of them you are getting would have me at a doctor's office ASAP nowdays. One or two, I get every now & then. A whole swarm, I'd take as a warning!


     Matthew smhair

Regular Member

Date Joined Dec 2008
Total Posts : 38
   Posted 5/17/2010 6:03 AM (GMT -7)   
Hi there,

I just wanted to let you know that the same thing happened to me when I first started Azathioprine. It was horrible, I'd have canker sores covering my mouth. I called my doctor, and he said to try and wait it out, so I just loaded up on the numbing gel. Eventually they did start to go away, and now I don't get them at all with the med. I'll get 1 or 2 if I start to flare.

So if you can get through the initial reactions, hopefully it will get better for you. Azathioprine has been a great medication for me. I do remember it taking a few weeks to clear up though. Good luck.
Rachael - 26 years old, diagnosed with CD in Dec. of 2004.

Currently on 60 mg of Prednisone, 2.4mg Lialda, and 100mg Azathioprine. Also multi-vitamins, and Anti-D when necessary. 1/2 tablet of 5MG-325 MG pain pill when needed

I thank God every day for an amazing support network of family, my boyfriend who has been there since the beginning, and my friends who never waver.

Regular Member

Date Joined May 2009
Total Posts : 177
   Posted 5/17/2010 2:12 PM (GMT -7)   
My flare last spring started with a series of neverending mouth sores. Then I started having swelling in my ankles and knees. Good luck. Acupuncture with a combination of Chinese herbs was able to get me through my flare. Good luck.

Regular Member

Date Joined Dec 2009
Total Posts : 65
   Posted 5/18/2010 2:19 PM (GMT -7)   
hi again guys!
thanks for all of your advice and support! :) the mouth ulcers seems to be coming and going quite steadily now and so i seem to have a stable number of them! im still putting on tonnes of bonjela gel onto them and im just keeping my fingers crossed that its just a coincidence until i see my GI on friday!
i think i'll definately need a FBC though... iv had a bit of a cough (nothing major) for about a week now and then i just noticed that my left ear lobe is hot, red and painful and when i press it, a whole load of puss comes out of the hole where i have my piercing :( its strange because i havent had an earring in for weeks and iv had the piercing for over ten years! There hasnt been any trauma etc either! i dont really know whats going on, but im hoping its nothing major as i had been feeling really good!
Thanks again for all of your support and i'll keep u informed!!

Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 5/18/2010 2:37 PM (GMT -7)   
I have a different theory.  I don't want to scare you but I had a bad reaction to 6-mp (the sister drug).  It started off with mouth ulcers.  My GI didn't seem to be concerned and told me to see my Primary doctor.  After several weeks of trying different meds to treat the ulcers with nothing working I decided to go to the ER.  I was in so much pain, I couldn't eat or drink.  My mouth would be glued shut in the morning because they would ooze and then dry up.  Turns out my bone marrow had shut down and all my blood counts were low.  I was in isolation for over a week.
I don't know if this is it but please make sure that you stay on top of it.  Make sure your blood count is okay.
Vicky / 49 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
Daughter (28) also has Crohn's since she was 12.
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor, Lisinopril

Veteran Member

Date Joined Feb 2003
Total Posts : 1958
   Posted 5/18/2010 2:56 PM (GMT -7)   
A couple of years ago I developed a couple of ulcers at the roof of my mouth closer to the back of the throat. When I went to my dentist he didn't know what they were, but then again he admits to some of these changes come with colitis but isn't too familar with crohns . The scar tissue is still there.

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