Why I freak out when I see one of these

Mouth ulcers. Or canker sores, whichever you call them. 

One way I could always tell when my inflammatory bowel disease was active was when I started getting mouth ulcers. I remember when I was younger and going through a rough patch of symptoms and I would have 20 or more ulcers in my mouth. It made it difficult to eat or even to swallow.

inflammatory bowel disease mouth ulcers stolen colon crohn's ulcerative colitis ostomyEven now, when my IBD is not causing symptoms, whenever one or more these pops up, I get concerned. This one in the picture is actually from biting my lip, but it’s taking a very long time to heal and that also worries me. I also have another on my tongue, that I can’t get a picture of, that has come and gone a time or two over the past couple of months. Also, about two weeks ago I had one of the roof of my mouth.

I know it doesn’t sound like much, but it’s enough to make me think twice about how I’ve been feeling and to get me to pay a little more attention to my health. That’s the thing about living with chronic illness: You’re never out of the woods. It’s never gone, you’re never cured. Sometimes it feels like you’re just waiting around for it to pop back up again.

I am very thankful to have had these years since my surgery without dealing with any major symptoms of inflammatory bowel disease, but there is always this little part of me, in the back of my mind, that worries about those symptoms coming back. It was a big concern during my pregnancy, since your body goes through so much change during that time, it can kick up a reoccurrence of symptoms. Again, I’m thankful to have made it through my pregnancy without that happening. 

We live in this constant state of uncertainty, and it’s difficult to get used to that. Seriously,  how do you even begin to deal with that?? I honestly don’t know. I guess you just eventually get used to that uncertainty and start to mistake it for normalcy. Regardless, this is why I try to live my life in the moment. I will readily admit that I am not always successful at that. I am a major planner and like to know what I’m getting into, but I’m trying to be present in each day. Today’s a good day, so I will enjoy it and try to live it for all that it’s worth. And if tomorrow is not a good day… I guess we’ll deal with that tomorrow.

13 thoughts on “Why I freak out when I see one of these

  1. Marie Colantoni Pechet

    Not sure if this will help, but I noticed a few things with my mouth sores. One is they are more frequent if I am under stress and / or don’t get enough sleep. Another is that switching to a toothpaste without sodium lauryl sulfate helped a lot.

    1. Stephanie Hughes Post author

      Thanks, Marie. I think it’s probably similar for me with the stress and no sleep. I haven’t been getting much sleep at all. I’ve also been dehydrated and I wonder if that’s why they’re taking a long time to heal.

      1. Patsy Gazaleh

        I have used the vitamin Lysine, which helps a lot too. It’s over the counter and a vitamin that we don’t get from the food we eat. It is unable to be absorbed in our colon. Most over the counter multi vitamins don’t have lysine in them.

  2. Lynn Boyd

    Hey, i had my ileostomy in january 2016. I love to read ur stories of your experiences. I also radomly get mouth ulcers quite regulary and they are so painful.. Im a 49 year old mum of two grown up girls and was living with ulcerative colitis for 10 years so the op was a god send to be honest.. I never thought i’d say that!!! Hope you keep well and continue with your blog.. Lynn from scotland.

    1. lorraine read

      I have had my ileostomy since 1983 i get mouth ulcers and white ulcerated lines in my mouth. I always thought it was caused by the Crohn’s but about 5 years sgo i was diagnosed with Lichen Planus in the mouth . It may be worth getting checked to see if you have this condition, it is very sore and painful and have to use steroid mouth wash tablets all the time and dermovate cream mixed with orabase paste. Also you can get some gengigel from the chemisg helps with pain x

  3. Molly B

    My sis used to get them all the time. She is severe RA (rheumatoid arthritis) since she was 28. She read somewhere to eat an orange a day. She swears by it, fought them for years/decades, and now that she faithfully eats one every morning has rarely had them. I hope you feel better! Hugs!

  4. Brandon Boatwright

    I still get them all the time. They come in waves. I just had a bout with about 7 of them. One right on the tip of my tongue which really wasn’t pleasant. I used coconut oil on them and it seemed to help a good bit. I’ve also heard it could be vitamin b deficiency, especially among those of us with Crohn’s / ostomies.

  5. veganostomy

    Yup, those also come with my own flares, so every one worries me. But you can’t live in a state of constant worry, so I try to ignore them for the most part.

  6. Kate

    Thank you for that post, I really needed to see that today. I’ve had surgery years ago and other than the occasional bowel obstruction I thought I was “cured” of UC. But I’ve recently had a lot of weight loss and some tremors, I’m being investigated for Addison’s disease. Just wondering if others who have had surgery have later developed other auto immune diseases?
    I love reading these posts.
    Thank you from South Australia

  7. Karen Brandt

    My daughter suffers from mouth sores also but now they go all the way down her esophagus. Anybody else have this? Her GI doctor scoped her and said she had never seen this before☹️

    1. Anna

      Hi there! While most crohns presents in the small intestine, mine would be in the large bowel and my mouth and esophagus. Doc said I was so atypical and it didn’t look like crohns, but it was part of my flare up. 🤷🏻‍♀️ Momma always told me I keep things interesting. Good luck! The best thing I’ve found is making sure I get enough rest. 💖

  8. Rach

    Mouth ulcers ARE my trigger for active flare ups. I’ve had them for almost 8 months now. I’m on Stelnow, last Biologic I have and I’m not responding. My skin is now breaking out with huge red sores too and I feel awful. For me i know my disease is triggered by my oral crohn’s. I feel so unwell struggling so much right now. Waiting for a full enteroscopy&ileoscopy to see if they’ll switch Stelara to 4weekly. I have other diseases too so feeling very sorry for myself right now. Sorry for moaning. I hope your ulcers don’t cause any further Crohn’s symptoms for you x

  9. Reagan K Reynolds

    This is a symptom I can empathize (and cry alongside you) with! I get mouth ulcers in droves all at one time—like 4-5 at a time down my tongue and on my gums and throat. It’s the worst feeling. 😭


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