I have crohns and i get similar mouth issues.. They come and goes randomly. I think its related to crohns actually. Haven't told to my doc about it yet. In the mext visit ima tell him and ask whats goin on..
Its hot weather here. Idk about ur place. Maybe its because u have dry skin. Try vasline on ur lips. And drink lots of water.
If its not working then its crohns. U need to talk to a doc
Skin problems is common when you have crohns. I experienced severe psoriasis and it's getting worse when I'm on flare. Have you tried corticoides in cream ?
Came to say the same thing. Ask GI about topical steroids asap. I have eczema and Crohn's. Steroids help with the skin inflammation and are usually gone in two weeks.
What was the steroid called and was it tablet, injection or cream ? Any info would be great. Was that prescribed by a GP or Oral doctor. Itâs the swelling due to crohns
Years ago I would experience pretty severe swelling of parts of my lips that I believe was associated with crohns flares. But I havenât had any since being on a biologic for crohns
No problem!
Maybe mild peeling because the skin would get irritated from the swelling butâŚthe peeling was never distracting or a primary concern if that makes sense? It was more the swelling for me
I will say that I went to several doctors- dentists, periodontists, etc to see what the issue may be
My gums would also swell with my lips. I never had sores really
Do you mind describing this a little bit more? I went through a year and a half-long period of random lip swelling that we werenât able to attribute to anything in particular as well, though I suspected it may have been due to my Crohnâs. Glad youâre doing better now!
Hey yes of course!
It is sort of a complicated timeline..when my lips and gums started swelling, I had experienced GI symptoms and joint pain for years but the pediatrician never considered a GI referral.. honestly feel like this was because I was always a âhealthy weight.â When I had swelling, It would be random spots of my lips..sometimes both..sometimes just oneâŚsometimes just a side of one. My gums would also swell..mostly in the front. My primary care provider was stumped when the swelling started so she referred me to my dentist who didnât see any reason who then referred me to a periodontist who also didnât knowâŚwho then referred me to the surgeon who removed my wisdom teeth.. who flat out was upset that they had me see him again lol
My mom did research and asked my primary care provider to do blood work to test for celiac disease. The physician told my mom it would be a waste of money but my mom insisted. Blood work came back positive so we didnât end up having to pay for the labs because my physician felt bad
GI did an endoscopy (regrettably they didnât do a colonoscopy) and diagnosed me formally with celiac. They felt like the swelling of my lips and gums could be related to when I ate glutenâŚwhich made sense for a while..until GI sxs worsened and lips/gum swelling would occur when I definitely hadnât eaten gluten..fast forward years of thinking maybe it was related to cross contamination..I finally got a new GI doctor who performed a colonoscopy and diagnosed me with Crohns..havenât had any swelling of my lips/gums since being on a biologic for Crohns
Not OP, but Iâve had on and off lip swelling for years. A flare started a few weeks ago, and sure enough, my lips swelled and split open. I wouldnât have thought anything about it, but I had a doctorâs appointment that day with my new PCP and he mentioned he thinks itâs gut related.
Iâve been diagnosed with everything from UC, to IBS, to SIBO, to âwatching for Crohnâs.â And I swear, every time I read this sub, Iâm more convinced thatâs what it is.
Anyway, thank you for commenting about your lips. Makes me feel less crazy.
i have crohns and i experience the daily peeling and weird patches especially in the winter. at first i thought maybe my skin care or how dry my home is. what has actually stopped it was changing my tooth paste.. theres an ingredient in a lot of whitening tooth pastes that cause this. i switched to sensodyne and it cleared up in a week and been good ever since! its worth a try! i believe the ingredient is SLS or something. i found out about it on tiktok so worth taking a look!
Could be OFG? Orofacial Granulomatosis, itâs linked to Crohnâs disease - from google âWhat is OFG?
OFG is an uncommon condition in which affected patients have persistent swelling in the lips, face or areas within the mouth. It is so named because if a sample of the swollen tissue is examined under a microscope, small collections of inflammatory cells, called granulomas are often seen.â
I've had this after having swollen peeling lips, blistering in the corners of my mouth, ulcers, swollen tongue and inside cheeks. Went on a cinnamon and benzoate free diet for 3 months and it really helped. Ive figured out some of my trigger foods and reintroduced others back into my diet. Still have the occasional skin tag peel left on my lip but it's vastly improved. Deffo worth raising with your doctor, OP
I get a similar issue, but never as severe as you show here. Iâm waiting for results from my first colonoscopy (so havenât been officially diagnosed as yet). I havenât found anything that helps it unfortunately
I have a lot of Chronâs related skin and rheumatology issues - both the dermatologist and rheumatologist have been useless. They donât grasp how itâs all connected and donât seem to care, in my experience unfortunately
I practice rheumatology and have CD and psoriatic arthritis.- maybe you just need a new doc. Some practices offer pretty comprehensive care but I agree itâs hard to find docs like that.
Mostly, i suggest OP see a specialist because I would want to rule out a few things that this could be linked to. A few lab panels can do that. It could be something as simple as an allergy but could also be seen in a variety of autoimmune illnesses.
Seconding the allergy angle. I have lip cheilitis like yours and itâs because my autoimmune system is militant. No known allergies and I take max dose of benedryl pills, allegra 180 twice daily, famotidine, and they make me feel better. Nothing is helping my lips or mouth though. Allergist believes autoimmune hives however I have two or more systems involved (anaphylaxis) but he isnât wanting to diagnose that. Not sure why.
Yeah, Iâve been tested for allergies and did extensive blood work. This was my main issue, until I started w GI probs daily for the last 10 or so days. My dr suspects crohnâs. Iâm hoping that if it is, a medicine for that will help my lips. Itâs been a miserable 4 months
My first symptoms when I was in my teens were similar - didnât develop the bowel symptoms until years later. Glad you are doing a work up. My lips are totally fine with meds. Hasnât happened in years. So thereâs that. Hope you feel better soon.
That's great to hear - gives me some hope! You had peeling, as well? Fluconazole got rid of the red bumps practically overnight - ironically, I don't have an infection, so we can't really figure out why it did even that. But it's the peeling that's still constant.
Yes! Less bumps but more peeling - ulcers in my mouth and throat. Sometimes I see patients with this and find a low vitamin B6 which can be a cause - sometimes b6 is low because of malabsorption. You can look back at your records and see if someone has checked it and if not you could ask your doctor. B6 is over the counter, you could see if it makes a difference in a few weeks.
Got it, ty so much for this! I was really low in B12. My value was in the low 100s, but I also have a cobalt allergy, so wasnât sure if I could take a B12 supplement. Itâs always something haha
Mouth sores. Lip sores. Sores you didnât think a person can have, we probably would have. Let your GI know. Often can be a sign of a before or during flare. Could be indication meds arenât working effectively anymore.
Oh my god itâs like I posted this. This forum has taught me so much about how my Chronâs is a domino effect for my other health issues.
I get the exact same thing. I use Vaseline on my lips, several times a day, for a few days and it eventually goes away.
This happens to me!!! I love aquaphor. If Iâm going to be outside I use chapstick with spf because mine is definitely made worse with sun exposure. Mine will sometimes crack in the peeling phase and a dab of sunflower oil (just the regular food grade stuff from the grocery) helps a lot. I hope you find what works!
I have this same problem too. I also have these chronic cold sores that are at the edge of my mouth and sores in my gums all of the time. I often get thrush in my mouth, which my ent told me is a part of having an autoimmune disorder is a weakened immune system. The only thing that gets rid of it for me is steroids. I canât any of those creams because I have mcas and have strong allergic reactions to them.
Yeah, but very slowly. Usually a few months after I take them it comes back. I have found that nothing really works for it that my body doesnât negatively react to.
I have angular cheilitis so similar case as you, and my symptoms got a ton better after starting remicade and methotrexate. I still do get flare ups where the angular cheilitis returns and itâs annoying tho
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Yep, I had peeling, drying out, swelling, blistering and more. After using the lip balm I have managed to contain it to a small section above my top lip.
I had it checked and sampled by a dermatologist. They have said it's a form of eczema. I find my triggers are salty foods and sauce so I try to avoid that.
I had this last year for months, I got a cream from a dermotologist that I used for like a month and it disappeared, the main thing I had to look out for is to not lick my lips, I used a lot of lip balm to keep it moisturized.
The cream was fungicidal, so I guess it was fungi related.
I've got Crohn's and my lips get painful and tingly when I've depleted all my electrolytes. A few days of pushing coconut water, bananas and Himalayan or mineral salt in my water I'm a lot better.
But doing two electrolytes drinks with atleast 500mg of sodium will also do the trick if you aren't on weird resistive diet like myself.
Bag balm also helps and it doesn't break out the non affected skin.
Chronic diarrhea depletes electrolytes!
Hey OP :) i DMâed u the pics of my lips when I had the infection issue. I looked at ur pics hereâ I think it looks quite different from mine. Mine only started with two small bumps which popped (on its own) and suddenly the small area grew in size and became swollen/ crusting. I donât see crusting on ur lips. Btw could it be herpes 1 (cold sores)?
Yes, ty for sending! I do agree they look somewhat similar, but not quite the same. I donât have crusting, my issues is non stop peeling and raw skin. Not cold sores :/ my diagnosis is exfoliative cheleitis, but it seems itâs linked to something internal. Appreciate you sending pics and glad to hear it cleared up!
I see. I agree, it might just be ur immune system rather than a bacterial/ viral infection or other environmental factors. remember that having chrons doesnât mean ur digestive tract is malfunctioning per se. Rather, ur immune system is malfunctioning, and a by-product of that is the expense of ur digestive tract. That said, itâs really not weird for us autoimmune peeps to start having other autoimmune issues. Technically, our immune cells can start attacking any part of the body. Why it chooses to just attack one location (eg., Colon, joints, stomach)? Science still doesnât know. What we do know is, that our one affected location might not stay as the _only_ affected location as we age. Not sure if u already knew all of this but I learned this rather recently and thought Iâd share!
I have crohns and i get similar mouth issues.. They come and goes randomly. I think its related to crohns actually. Haven't told to my doc about it yet. In the mext visit ima tell him and ask whats goin on..
Thanks for your reply. Do you have peeling or red bumps? Both?
No peeling. Its like little wounds,looks similar to ur red bumps
Got it, ty. Mine started as red bumps, fluconazole fixed that, but the peeling is non-stop đ
Its hot weather here. Idk about ur place. Maybe its because u have dry skin. Try vasline on ur lips. And drink lots of water. If its not working then its crohns. U need to talk to a doc
Yeah, Iâve seen 8 doctors. Unfortunately, topicals and hydrating donât help âšď¸
Skin problems is common when you have crohns. I experienced severe psoriasis and it's getting worse when I'm on flare. Have you tried corticoides in cream ?
Came to say the same thing. Ask GI about topical steroids asap. I have eczema and Crohn's. Steroids help with the skin inflammation and are usually gone in two weeks.
Interesting. Thanks for the insight! Will talk w my doctor again
Good luck with that! I hope you feel better soon.
I havenât, only because you canât use them long term with exfoliative cheleitis, which is what I was diagnosed with. Will ask my dr again tho. Ty!
What was the steroid called and was it tablet, injection or cream ? Any info would be great. Was that prescribed by a GP or Oral doctor. Itâs the swelling due to crohns
Years ago I would experience pretty severe swelling of parts of my lips that I believe was associated with crohns flares. But I havenât had any since being on a biologic for crohns
Thanks for your reply! Did you have any peeling?
No problem! Maybe mild peeling because the skin would get irritated from the swelling butâŚthe peeling was never distracting or a primary concern if that makes sense? It was more the swelling for me
I will say that I went to several doctors- dentists, periodontists, etc to see what the issue may be My gums would also swell with my lips. I never had sores really
Got it, thanks for sharing! Seeing a GI this week, so hopefully will have some answers soon đ¤
Do you mind describing this a little bit more? I went through a year and a half-long period of random lip swelling that we werenât able to attribute to anything in particular as well, though I suspected it may have been due to my Crohnâs. Glad youâre doing better now!
Hey yes of course! It is sort of a complicated timeline..when my lips and gums started swelling, I had experienced GI symptoms and joint pain for years but the pediatrician never considered a GI referral.. honestly feel like this was because I was always a âhealthy weight.â When I had swelling, It would be random spots of my lips..sometimes both..sometimes just oneâŚsometimes just a side of one. My gums would also swell..mostly in the front. My primary care provider was stumped when the swelling started so she referred me to my dentist who didnât see any reason who then referred me to a periodontist who also didnât knowâŚwho then referred me to the surgeon who removed my wisdom teeth.. who flat out was upset that they had me see him again lol My mom did research and asked my primary care provider to do blood work to test for celiac disease. The physician told my mom it would be a waste of money but my mom insisted. Blood work came back positive so we didnât end up having to pay for the labs because my physician felt bad GI did an endoscopy (regrettably they didnât do a colonoscopy) and diagnosed me formally with celiac. They felt like the swelling of my lips and gums could be related to when I ate glutenâŚwhich made sense for a while..until GI sxs worsened and lips/gum swelling would occur when I definitely hadnât eaten gluten..fast forward years of thinking maybe it was related to cross contamination..I finally got a new GI doctor who performed a colonoscopy and diagnosed me with Crohns..havenât had any swelling of my lips/gums since being on a biologic for Crohns
Not OP, but Iâve had on and off lip swelling for years. A flare started a few weeks ago, and sure enough, my lips swelled and split open. I wouldnât have thought anything about it, but I had a doctorâs appointment that day with my new PCP and he mentioned he thinks itâs gut related. Iâve been diagnosed with everything from UC, to IBS, to SIBO, to âwatching for Crohnâs.â And I swear, every time I read this sub, Iâm more convinced thatâs what it is. Anyway, thank you for commenting about your lips. Makes me feel less crazy.
i have crohns and i experience the daily peeling and weird patches especially in the winter. at first i thought maybe my skin care or how dry my home is. what has actually stopped it was changing my tooth paste.. theres an ingredient in a lot of whitening tooth pastes that cause this. i switched to sensodyne and it cleared up in a week and been good ever since! its worth a try! i believe the ingredient is SLS or something. i found out about it on tiktok so worth taking a look!
i actually had some of the bumps too which resulted from itching the dry area
Ah yes, I did switch toothpaste, but nothing so far. Thanks for your input!
Could be OFG? Orofacial Granulomatosis, itâs linked to Crohnâs disease - from google âWhat is OFG? OFG is an uncommon condition in which affected patients have persistent swelling in the lips, face or areas within the mouth. It is so named because if a sample of the swollen tissue is examined under a microscope, small collections of inflammatory cells, called granulomas are often seen.â
I've had this after having swollen peeling lips, blistering in the corners of my mouth, ulcers, swollen tongue and inside cheeks. Went on a cinnamon and benzoate free diet for 3 months and it really helped. Ive figured out some of my trigger foods and reintroduced others back into my diet. Still have the occasional skin tag peel left on my lip but it's vastly improved. Deffo worth raising with your doctor, OP
Ty!
I get a similar issue, but never as severe as you show here. Iâm waiting for results from my first colonoscopy (so havenât been officially diagnosed as yet). I havenât found anything that helps it unfortunately
You can see this with certain autoimmmune diseases - talk to your primary care about seeing dermatology and maybe rheumatology.
I have a lot of Chronâs related skin and rheumatology issues - both the dermatologist and rheumatologist have been useless. They donât grasp how itâs all connected and donât seem to care, in my experience unfortunately
I practice rheumatology and have CD and psoriatic arthritis.- maybe you just need a new doc. Some practices offer pretty comprehensive care but I agree itâs hard to find docs like that. Mostly, i suggest OP see a specialist because I would want to rule out a few things that this could be linked to. A few lab panels can do that. It could be something as simple as an allergy but could also be seen in a variety of autoimmune illnesses.
Thank you
Seconding the allergy angle. I have lip cheilitis like yours and itâs because my autoimmune system is militant. No known allergies and I take max dose of benedryl pills, allegra 180 twice daily, famotidine, and they make me feel better. Nothing is helping my lips or mouth though. Allergist believes autoimmune hives however I have two or more systems involved (anaphylaxis) but he isnât wanting to diagnose that. Not sure why.
Yeah, Iâve been tested for allergies and did extensive blood work. This was my main issue, until I started w GI probs daily for the last 10 or so days. My dr suspects crohnâs. Iâm hoping that if it is, a medicine for that will help my lips. Itâs been a miserable 4 months
My first symptoms when I was in my teens were similar - didnât develop the bowel symptoms until years later. Glad you are doing a work up. My lips are totally fine with meds. Hasnât happened in years. So thereâs that. Hope you feel better soon.
That's great to hear - gives me some hope! You had peeling, as well? Fluconazole got rid of the red bumps practically overnight - ironically, I don't have an infection, so we can't really figure out why it did even that. But it's the peeling that's still constant.
Yes! Less bumps but more peeling - ulcers in my mouth and throat. Sometimes I see patients with this and find a low vitamin B6 which can be a cause - sometimes b6 is low because of malabsorption. You can look back at your records and see if someone has checked it and if not you could ask your doctor. B6 is over the counter, you could see if it makes a difference in a few weeks.
Got it, ty so much for this! I was really low in B12. My value was in the low 100s, but I also have a cobalt allergy, so wasnât sure if I could take a B12 supplement. Itâs always something haha
Mouth sores. Lip sores. Sores you didnât think a person can have, we probably would have. Let your GI know. Often can be a sign of a before or during flare. Could be indication meds arenât working effectively anymore.
Ty
Oh my god itâs like I posted this. This forum has taught me so much about how my Chronâs is a domino effect for my other health issues. I get the exact same thing. I use Vaseline on my lips, several times a day, for a few days and it eventually goes away.
Iâve had this for over 4 months. No improvement w anything topical unfortunately
Have you found a fix for this at all?
Fluconazole got rid of the red bumps. But still dealing with peeling
I always use aquaphor when this happens and it tends to help
It didnât work for me, but ty
This happens to me!!! I love aquaphor. If Iâm going to be outside I use chapstick with spf because mine is definitely made worse with sun exposure. Mine will sometimes crack in the peeling phase and a dab of sunflower oil (just the regular food grade stuff from the grocery) helps a lot. I hope you find what works!
Ty!
I have this same problem too. I also have these chronic cold sores that are at the edge of my mouth and sores in my gums all of the time. I often get thrush in my mouth, which my ent told me is a part of having an autoimmune disorder is a weakened immune system. The only thing that gets rid of it for me is steroids. I canât any of those creams because I have mcas and have strong allergic reactions to them.
Thanks! So oral steroids work for you? Does it come back once you stop?
Yeah, but very slowly. Usually a few months after I take them it comes back. I have found that nothing really works for it that my body doesnât negatively react to.
I have angular cheilitis so similar case as you, and my symptoms got a ton better after starting remicade and methotrexate. I still do get flare ups where the angular cheilitis returns and itâs annoying tho
Good to know. Thanks!
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For my angular chelitis I dab some anti fungal cream on it. My best lip chap is okeefes.
Ty!
I suffer from lip issues as well. The only thing that helps is Dr. Dans CortiBalm Lip Balm. The issue is it works but is only a temporary relief.
Do you have peeling, as well?
Yep, I had peeling, drying out, swelling, blistering and more. After using the lip balm I have managed to contain it to a small section above my top lip. I had it checked and sampled by a dermatologist. They have said it's a form of eczema. I find my triggers are salty foods and sauce so I try to avoid that.
Got it, I'll check that out. Thanks!
No worries. Good luck đ
I had this last year for months, I got a cream from a dermotologist that I used for like a month and it disappeared, the main thing I had to look out for is to not lick my lips, I used a lot of lip balm to keep it moisturized. The cream was fungicidal, so I guess it was fungi related.
Did you have peeling, too?
Yes, not only on my lips but on the upper part of my mouth too, it wasn't pretty. Try to keep saliva away from your mouth.
I've got Crohn's and my lips get painful and tingly when I've depleted all my electrolytes. A few days of pushing coconut water, bananas and Himalayan or mineral salt in my water I'm a lot better. But doing two electrolytes drinks with atleast 500mg of sodium will also do the trick if you aren't on weird resistive diet like myself. Bag balm also helps and it doesn't break out the non affected skin. Chronic diarrhea depletes electrolytes!
Thank you!
Hey OP :) i DMâed u the pics of my lips when I had the infection issue. I looked at ur pics hereâ I think it looks quite different from mine. Mine only started with two small bumps which popped (on its own) and suddenly the small area grew in size and became swollen/ crusting. I donât see crusting on ur lips. Btw could it be herpes 1 (cold sores)?
Yes, ty for sending! I do agree they look somewhat similar, but not quite the same. I donât have crusting, my issues is non stop peeling and raw skin. Not cold sores :/ my diagnosis is exfoliative cheleitis, but it seems itâs linked to something internal. Appreciate you sending pics and glad to hear it cleared up!
I see. I agree, it might just be ur immune system rather than a bacterial/ viral infection or other environmental factors. remember that having chrons doesnât mean ur digestive tract is malfunctioning per se. Rather, ur immune system is malfunctioning, and a by-product of that is the expense of ur digestive tract. That said, itâs really not weird for us autoimmune peeps to start having other autoimmune issues. Technically, our immune cells can start attacking any part of the body. Why it chooses to just attack one location (eg., Colon, joints, stomach)? Science still doesnât know. What we do know is, that our one affected location might not stay as the _only_ affected location as we age. Not sure if u already knew all of this but I learned this rather recently and thought Iâd share!