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I have UC. Why do I get mouth ulcers?

Jessi

Moderator
Well there it is. My question is in the title. I just don't understand, because UC is only in the colon. Strange stuff.... :confused2:

Anyone else with UC and mouth ulcers?
 

vonfunk

Bourbon Bandito
Location
Toronto,
It could just be because of the UC but not directly related. I have a massive red patch of dry skin on my chest that is because of the UC.

Autoimmune diseases can have other symptoms that are caused by but not directly caused by the disease.
 

Jessi

Moderator
Crohn'sGuy, I had the mouth ulcers way before I was ever diagnosed or medicated, so it couldn't be that, but thanks for offering advice. Now I am on Asacol HD and Remicade, no ulcers at the moment.

vonfunk, I also have red patches sometimes. I was diagnosed with Psoriasis 17 years ago and also have Psoriatic Arthritis. But neither of those cause mouth ulcers that I know of.

Could I have Crohn's, maybe? I'm still new to all this. I have only had UC symptoms for a few years now.
 
I get throat/mouth ulcers, but I have crohns... Mouth ulcers could indicate crohns. Talk to your Gp. It could mean that it isn't only in your colon.
 
Crohn'sGuy, I had the mouth ulcers way before I was ever diagnosed or medicated, so it couldn't be that, but thanks for offering advice. Now I am on Asacol HD and Remicade, no ulcers at the moment.

vonfunk, I also have red patches sometimes. I was diagnosed with Psoriasis 17 years ago and also have Psoriatic Arthritis. But neither of those cause mouth ulcers that I know of.

Could I have Crohn's, maybe? I'm still new to all this. I have only had UC symptoms for a few years now.
How were you diagnosed with UC? What are your symptoms? What did your GI tell you when you were diagnosed? Why do you suspect you have Crohn's? I ask these questions to see if you have another reason for suspecting CD. Mouth ulcers can be associated with Crohn's, but they can also be caused (and are more likely to be caused) by about a million other things such as vitamin deficiency (vitamin C, B12, etc.), physical abrasions, eating citrus...

My OH and I both get mouth sores from toothpaste. He got them long before I did and more than me. (I have CD, OH does not). This is apparently not uncommon. We just switch toothpastes when they start happening and they go away until we develop sensitivity again, and we repeat the process.
 

Jessi

Moderator
How were you diagnosed with UC? What are your symptoms? What did your GI tell you when you were diagnosed? Why do you suspect you have Crohn's? I ask these questions to see if you have another reason for suspecting CD. Mouth ulcers can be associated with Crohn's, but they can also be caused (and are more likely to be caused) by about a million other things such as vitamin deficiency (vitamin C, B12, etc.), physical abrasions, eating citrus...

My OH and I both get mouth sores from toothpaste. He got them long before I did and more than me. (I have CD, OH does not). This is apparently not uncommon. We just switch toothpastes when they start happening and they go away until we develop sensitivity again, and we repeat the process.
Wow! That makes me feel a lot better already. I was really hoping someone would tell me that it's not likely Crohn's. But I will answer your questions anyway... :)

Diagnosed: after a colonoscopy and several biopsies. No endoscopy was done. I haven't mentioned my mouth ulcers to my gastro. I never thought about it til now, because I haven't had any for almost a year. But I have had probs with for the last several years off and on.

Symptoms: during a flare ~ bloody diarrhea 10-20 times a day, pain in all quadrants of abdomen, back, sides, rest of my body too. Fatigue, extreme weight loss, lack of motivation, depression, anxiety, syncope, loss of appetite, nausea, dehydration, etc.

GI told me: most likely UC, sending biopsies into lab, ulcers in sigmoid colon, descending colon, transverse colon, and cecum. (no ulcers in the ascending colon, though.) 'Severe, severe, mild' is how he put it. Labs confirmed Chronic Active UC.

I suspect Crohn's is a possibility because I have an IBD for sure, but we have not looked at my mouth, throat, stomach, or small int. No other reasons. Not paranoid, just wondering.

For the record, I was immediately put on Asacol HD with 60mg of prednisone, tapering down 10mg each week until finished. I stopped bleeding after a couple of days on meds. I was very distended for a month or so, constipated for a couple weeks right after colonoscopy. Then I started having regular solid BMs ranging from once to five times daily since then, with an occasional BM-free day. I am currently done with the pred and have added Remicade. Nuts and fruits that have caused ulcers in my mouth in the past are not bothering me right now.

Please... Let me know what you think of all this.
 
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AndiGirl

Your Story Forum Monitor
I think they can be associated with either Crohn's or UC. I get mouth ulcers every few months or so. I was told they are pretty common with CD.
 
I don't think there's any reason to suspect Crohn's over UC, especially if they used a biopsy to help diagnose. That said, there are many people on here who were diagnosed wrong for years before getting the right answer, or any answer at all, so it's not impossible. It sounds more like UC though to me and my non-doctory ears.

Being on pred and Remicade would also treat Crohn's if you had it in any case, so you'd be "covered" for the time being. Have you had your vitamin levels checked recently? Maybe eat some fruit (but not citrus). That's what my doc told me to do when I pointed out a mouth sore.
 

DustyKat

Super Moderator
I assume when you say you had ulcers in those areas there was actual inflammation throughout your large bowel, including the ascending colon?

Dusty. xxx
 

Jessi

Moderator
I assume when you say you had ulcers in those areas there was actual inflammation throughout your large bowel, including the ascending colon?

Dusty. xxx
Yes, inflammation on overdrive. And I am also assuming that it included the ascending. Still learning about my body, though.
 
I get them, but even before colitis. I think its because of food allergies.
A wiki page for 'mouth ulcer' shows some things that causes it.
 

Jessi

Moderator
I get them, but even before colitis. I think its because of food allergies.
A wiki page for 'mouth ulcer' shows some things that causes it.
I thought that's what my problem was, too. I would get ulcers in my mouth every time I ate fruit - any fruit, really, but apples and pears were the worst. Nuts would cause ulcers, too. I thought I was allergic, but with lysine, I could eat some fruits with caution.

Now, almost a year later, I am eating fruits and nuts without getting ulcers.

I have heard of allergies "going away," but this is ridiculous... I mean, being allergic to ALL fruits and ALL nuts for only a couple years seems strange, right?
 

DustyKat

Super Moderator
Even though mouth ulcers and extra intestinal manifestations of IBD are more common with CD they do occur with UC.

Matt had mouth ulcers about 18 months ago that at the time I never dream't they had anything to do with CD, maybe they didn't, at the time I had no idea he was going to develop it. I did start him on B complex and that saw them off. I stopped giving him the supplement and when he became ill and was flaring they never did come back.

I put it down to just another of the inexplicable anomalies of IBD. No rhyme, no reason, just bewilderment!

Dusty. xxx
 

Jessi

Moderator
Thanks so much for telling me that. Maybe I'll never see them again. I hope! They would last for around a month or so if left untreated. I really feel for anyone who gets them. It's so difficult to put anything into your mouth. Even your own tongue and teeth cause pain when there's a mouth ulcer.
 
Follow up question about mouth sores

Hey, I've been wondering about this myself--not whether I have Crohns instead of UC, but about these little painful, white sores on my gums. I gargle with hydrogen peroxide and Lysterine for a few days and they go away, but I was wondering as well if they were connected with UC or a side effect of Sulfasalazine as I've heard mentioned. I'm assuming it's a lowered resistance thing with Humira, etc, bacterial, but thought since we were on the subject I'd ask. Anyone care to share a description of their mouth ulcers? Come on, it'll be great fun! :) Everyone says "mouth ulcers" but what if we're all talking about different things?
 
Hey, I've been wondering about this myself--not whether I have Crohns instead of UC, but about these little painful, white sores on my gums. I gargle with hydrogen peroxide and Lysterine for a few days and they go away, but I was wondering as well if they were connected with UC or a side effect of Sulfasalazine as I've heard mentioned. I'm assuming it's a lowered resistance thing with Humira, etc, bacterial, but thought since we were on the subject I'd ask. Anyone care to share a description of their mouth ulcers? Come on, it'll be great fun! :) Everyone says "mouth ulcers" but what if we're all talking about different things?
Mine were like yours. White ulcers. They went away last december, at the same time my smokers-cough (which I attributed to crohns) went away. I guess my crohns decided to leave my mouth and go to my ass. :S
 
Hey, thanks for sharing, Nchuleftingth. For some reason this scares me a little knowing it's related to the disease. I was hoping I just had poor gum care. Oh, well. I guess I should be happy that they are not worse and that things are well controlled right now between Humira and Sulfasalazine. :)
 
Hey, thanks for sharing, Nchuleftingth. For some reason this scares me a little knowing it's related to the disease. I was hoping I just had poor gum care. Oh, well. I guess I should be happy that they are not worse and that things are well controlled right now between Humira and Sulfasalazine. :)
Try gargling saline, or a salt/baking soda mixture. Saline kinda stings, but if you add baking soda to your solution, it neutralizes it, and so you don't feel the pain. PLUS, baking soda works really well on healing ulcers.
 
I got one right now, I had it when I woke up Sunday morning. Right under my tongue to the side. I guess it lasts for a week. Its all red and slice open with white all around. Part of life i guess.
 

Jessi

Moderator
Mine usually last at least a week, too. It makes it miserable to put anything in your mouth, doesn't it? Even water hurts. I hope you feel better soon, Swirl.
 
about a day or two after i got the one under my tongue, I had another or a few on the right side of my tongue, it looked really infected, and it looked like i had a hole in my tongue, the doctor seen it and told me it was a ulcer, it was really sore and looked like a worm almost lol its completely heal now.
I never had it this bad. He told me i can get stuff for that over the counter at the pharmacy.
I do like this new GI office i go to now. Its for both clinical trial and regular GI issues.
But anyway these ulcers are like mosquitoes!
 
My diagnosis was UC for 20 years before being "updated" to Crohn's. Make sure your diagnosis has been confirmed with a biopsy, and that you're getting regular colonoscopies including biopsies.
 
That's good! But, the way I understand it, that doesn't mean they might not find granulomas later. So, keep up with your screenings. Good luck with the ulcers. I haven't read this entire thread in complete detail, but in case nobody already mentioned it, my doctor prescribed some sort of dental paste with triamcinlone (sp?) in it. It's a topical steroid in a sticky sort of gritty gum that will stick to the ulcers and protect them while they heal, but it give me a bad feeling of dry mouth for a few minutes. It works very well and relieves the pain immediately
 
many people get canker sores (inside the mouth) who have no relation to either illness. They are very common. I believe it's a genetic disposition. unlike cold sores (not in the mouth) they are not contagious. many women get them around that time of the month. no matter how you get them they suck! stock up on orajel.
 

Carrie630

The Prettiest Princess
my old GP used to tell me that mouth ulcers can pop up in response to extreme stress. I guess I can see it, I mean, when we're ill like this we're certainly emotionally, physically, and psychologically stressed. Right now I have two where my gums/lower lip connect, one on the right side of my tongue about 2/3rds of the way back, and one on the inside of my lower lip. I gargle with salt water or peroxide mouthwash that I got at the pharmacy.
 
My GI doctor that I'm doing a clinical trial for said UC people also get ulcers in their mouth. But recommend getting something over the counter for it at the pharmacy. So I guess this problem is chronic too......
 
Uc

Have more of u tried 'primal defense'' Capsules.I have UC for 2 years and it seems cortizone,asacol,pentaza dont work any more.It seems i just have to try something new,or maybe in addition with my recent medicine?
 

KWalker

Moderator
I have crohn's, and about 3 years ago during my worst flare up, we counted 25, yes 25 ulcers in my mouth at one time. It was the worst pain I've ever felt that period of my life. It was so bad there was no way I could eat anything. Things were too hard and felt like they were cutting the ulcers, soup was too hot, and eventually it got to the point I could barely open my mouth because it felt like I was stretching the ulcers. I lost a ton of weight in a really short period of time, so eventually the doctor gave me this numbing stuff I would gurgle and it froze my mouth long enough to eat a small meal. It was brutal
 
Well there it is. My question is in the title. I just don't understand, because UC is only in the colon. Strange stuff.... :confused2:

Anyone else with UC and mouth ulcers?
Hi,yes i got it too.Seems its the cortizones.Very important is the basics,clean theeth very properly,floss,rinse your sinusses with slightly mixed salt water often.All the bacteries there attack these ulcers.Remove cane sugar and acid foods,it make it worse.My ulcers slowly heal by itself.Otherwise u can get more medicine for that too.But by this time i hate any extra medicines.Good luck
 

David

Co-Founder
Location
Naples, Florida
I did start him on B complex and that saw them off. I stopped giving him the supplement and when he became ill and was flaring they never did come back.
This could be the key for many of you. Various B vitamin deficiencies can cause mouth ulcers. Iron deficiency anemia can as well. It certainly won't hurt to supplement a little and could possibly make a big difference.
 

KWalker

Moderator
Is there any sort of multivitamin that covers all, if not most of the vitamins we need? It could get very expensive to buy a seperate bottle of every single vitamin we need everyday.

Just out of curiosity
 
Well there it is. My question is in the title. I just don't understand, because UC is only in the colon. Strange stuff.... :confused2:

Anyone else with UC and mouth ulcers?
Hi Jesse,
I just joined the site, on behalf of my mom. She has UC and has been suffering with these flare ups of mouth ulcers. You're right about the ridiculous pain that come from them, according to what she tells me. If I call her when she has them, she doesn't even wanna talk because they hurt so bad. After reading everyone's input, I guess I'll research the possibility of it being a "B Complex", (B9), imbalance. You definitely are not alone on this. I'm sorry you have UC and the ulcers, but I'm glad to find out that mom's not alone on this. I'll let you know if I find any answers.
Take care,
Susie
 

Jessi

Moderator
Thanks, Susie. :hug:

It's nice that you're here for the love of your mom. I hope she's well.

Would you care to share your/her story with us? We have a "Your Story Forum" where you can post it so we can all get to know you.

I look forward to hearing from you. :)
 
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