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Mouth ulcers and IBD

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Ulcerative Colitis
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Posted 9/21/2020 4:40 PM (GMT 0)
Hey there,

Curious if anyone else gets recurrent canker sores or inflammation in their mouths (e.g. redness under tongue, on their gums, roof of their mouths) as a potential result of their IBD. I heard it was somewhat common but haven't actually talked to anyone with experience. Mouth sores can be really painful and frustrating and if there are many, it really lowers your quality of life, very similar to being in a UC flare. Anyways, thought I'd ask.

Thanks,
D
Posted 9/21/2020 5:25 PM (GMT 0)
I don't think it's as common as you say. I've had only a few deep, very painful and long lasting mouth ulcers...seems not related to UC, and definitely never during flares. Although, I have 4 autoimmune diseases...but they could have been related as viral.

q
Posted 9/21/2020 7:28 PM (GMT 0)
Yes I tend to get them, probably around 10 episodes a year. Only once I had two of them which merged together making eating painful. All the other times they have caused discomfort. I have found that propolis have an effect on mine especially if applied as soon as I feel the stinging sensation.
Posted 9/21/2020 8:07 PM (GMT 0)
I get then when I am stressed. The only time I had them when they were really big and painful was 6 months before my first flare up/diagnosis. My dentist suggest I have a doctor look at one on my gum and prescribed a mouthwash. I believe for some folks they are related to flare ups, but I get them in my mouth when my UC is totally quiet.
Posted 9/21/2020 8:18 PM (GMT 0)
I’ve just recovered from a bad dose of ulcers last week, I had a lot of small sores and had an unusual tingly/burning feeling on my tongue and mouth. Went to my doc in the end as they were causing so much discomfort and she gave me a mild steroid to gargle, I’m not experiencing any flare up of UC though, hard to know if there related.

I think some people are just prone to getting them too. However mine have got worse since I was diagnosed (earlier this year).

Also went to my routine cleaning at the dentist and she said the ulcers were down to my gums being inflamed etc.

Salt and water and plenty of cold food & drinks helped me!

Vitamin B12 deficiency can cause mouth ulcers too mine was on the low side!

Hope they get better for you, they can be a real pain!!
Posted 9/22/2020 7:58 AM (GMT 0)
I get them pretty bad. I use SLS-free toothpaste, and injectable MTX keep mine mostly at bay now. Prednisone can also help if it gets really severe.
Posted 9/22/2020 12:41 PM (GMT 0)
Mouth ulcers do happen with crohn's and UC as an extra-intestinal manifestation. More common with crohn's. It's about 20 percent incidence with ibd. Mouth is just the other end of the same tube we have problems with. Makes sense that bacteria is messed up there too.
Posted 9/22/2020 5:42 PM (GMT 0)
Yes I get them when I'm flaring. I also get genital ulcers at the same time. Very debilitating

I have a J-pouch now and it still happens. Yes I can still "flare" it just has different targets in my body after surgery. Mainly the mouth, genital area and my joints. Lucky me
Posted 9/22/2020 6:30 PM (GMT 0)
Weird but I used to get really painful canker sores that actually made me feel sick for a couple of days — besides the pain. What’s weird is that now I’m in full Remission with entyvio I don’t get them anymore. If I do get one it stays very teeny and then heals without growing larger and getting painful.

Makes sense that we have mucous membranes in our mouth and also in our guts.
Posted 9/22/2020 10:21 PM (GMT 0)
While I thankfully don't have this issue, what you all seem to be describing sounds like herpes simplex virus.

Is that possible?
Posted 9/23/2020 3:02 PM (GMT 0)
Herpes simplex causes cold sores on the outside of the mouth doesn’t it? I have never had one cold sore in my entire life.

I also should have said I’ve always had painful long-lasting canker sores — long before I had UC. Most of my canker sores usually came from injuries — like biting my lip while chewing. They’d just keep growing bigger and whiter and deeper and more painful. Now when I bite my lip it stays very small and heals quickly.
Posted 9/23/2020 5:00 PM (GMT 0)
Herpes can happen in the mouth...that's why it's best to have them checked.

I see I didn't expand...i was sure I did...weird. so unlike me😋
I do get a tiny few ones on my lower gums since 1976ish.
Anyway they seem related to nerve since I can feel it start in my ear and sensitivity on my face. Once on one side. The next time on the other side and so on. I was sure they were Herpes because of that pattern, so had them checked...apthous, not herpes.
My gums seem more sensitive lately and they can as well...Seems either impact related via food or constant neck issues or immune related.

I have gotten small ones on the edges of my tongue from food too much of sweet foods or biting...gone in a day or two.
But the deep painful ones that last weeks and weeks...only a few in my lifetime. They are memorable .

One product that does seem to help is Orajel for mouth sores which has zinc in it. L-Lysine could help possibly...I dont know if any topical L-Lysine can be used in the mouth.

q
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