• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Natural way to deal with mouth rash

mikeyarmo

Co-Founder
Hi everyone,

I know there has been a lot of posting about mouth ulcers/swelling/rashes, but I just wanted to make sure the symptoms I experience are similar to what some of you have had.

I had a rash appear for a couple weeks approximately 3 years ago. I had a steroid cream that took care of it and it did not come back until the past winter. Since January or February I have had a bad rash around my lips that sort of looked like clown makeup or that I put lipstick all around my lips.

The closest picture of what it looked like is here. Please do not look if you are at all squeamish.

Is this similar to what anyone else has been experiencing? I have had success using a steroid cream 2x a day everyday but if I miss even one application the rash starts to come back. It is also on some of my fingers and wrist (mostly left hand for some reason). I will likely try to get back to the dermatologist, but am worried about what he will put me on next (antibiotics?).

Does anyone have any natural remedies they can recommend? I dont know if my diet is causing any of this so any recommendations on potential deficiencies that could cause this is also appreciated.
 

David

Co-Founder
Location
Naples, Florida
Hi Mike,

Would you consider it a rash as in it is scaly, bumpy, etc or might it be hyperpigmentation?

P.S. Yoga wasn't going to fix that, sorry :(
 

mikeyarmo

Co-Founder
It is more hyperpigmentation... the rash feels like inflammation as the skin around my mouth becomes slightly raised and warm in addition to a darker red colour. With the steroid cream the rash goes away, but this is not a long-term solution!

No problem re: Yoga. I really enjoy it regardless :). My one month trial membership ended and I plan to purchase a 50 visit pass sometime this week.
 

David

Co-Founder
Location
Naples, Florida
I've been doing a LOT of research into vitamins and minerals lately. Lots of such deficiencies can cause issues with the mouth, lips, other areas of the skin. Obviously it could easily be something else but I thought i'd throw the idea out there for you, especially since Crohnies are so often deficient. A couple links for you:

Vitamin Bx and hyperpigmentation

Vitamin Bx perioral rash

If I'm not being too nosey, you had a resection right? What specifically was resected?
 

mikeyarmo

Co-Founder
As long as you are not asking me when I am proposing you are not being too nosey :D.

Thanks so much for the links!

I did have a resection of my terminal ileum. I believe this is fully responsible for abosrption of b12. I have had bloodwork done since surgery and it appeared that I still absorbed b12 properly. I eat a fair amount of meat so in theory I should be getting enough, but I can call my gastro again and ask if my latest results did show anything being a bit low. I thought all b vitamins are plentiful in meat but maybe I am wrong and am deficient in some...

I eat a large amount of beans/lentils and am worried that this might actually be responsible. I also eat next to no fruit (but I do have vegetables). The rash first appeared during a time I ate a lot of fruit, so I dont think the issue is vitamin C related. I believe I was eating beans/lentils at the time the rash did first appear also.
 

David

Co-Founder
Location
Naples, Florida
You're B12 deficient. I guarantee it. Schedule some injections and I'd bet money your rash goes away. I'll explain why in my next response, I have to find some links.
 

David

Co-Founder
Location
Naples, Florida
1. The terminal ileum does indeed absorb your B12. If you don't have an intact/healthy TI then studies show that only 1% of oral B12 is absorbed (by some not yet discovered mechanism). You'd have to take huge oral doses to get the daily amount you need and diet alone isn't going to do it.

2. The liver can store multiple years worth of B12 if you're completely healthy. Point here is that since your resection you've been depleting your stores and the shelves are now empty.

3. Even if your B12 levels appear "normal" according to serum B12 tests, you may very well be deficient. Read all my posts in this thread.

Is it 100% sure that B12 deficiency is causing your rash? No (though I'm guessing it is). But I will bet you anything that you are indeed B12 deficient and you need to start supplementing.
 

mikeyarmo

Co-Founder
I really hope your right David! My understanding is that absorption of B12 is only possible through the terminal ileum. Mine was not completely removed though, so I thought I was still absorbing it. I have had blood work done annually since surgery and such a defficiency was never mentioned to me. Even if it did not show up as below the range of acceptable, I could see how it is possible that I am unable to absorb as much as is necessary for normal functioning.

Edit after reading David's post:

Ok I am sold! I guess this was fairly timely to go along with the other thread discussion!

Will post my results once I have started the injections! Need to look into how many is safe to start with initially but hope to start injecting this week!
 

DustyKat

Super Moderator
I agree with David regarding B12.

The rash you describe can often be attributed to a B vitamin deficiency. I would also throw in having your ferritin levels tested. Although Folic Acid (B9) is absorbed throughout the small intestine, and although Sarah would have had a more extensive resection than you she also suffers with with a Folate and B12 deficiency. While you are at it having your Iron Stores tested might be a good idea.

Just out of interest...well before I had any idea that Matt had Crohns he suffered with mouth ulcers. I did quite a bit of research on treatments and settled on treating them with B Complex, it did the trick nicely.

Dusty. xxx
 

mikeyarmo

Co-Founder
Thanks Dusty!

I am going to go straight into B12 injections and if that does not work will get some blood work done to see if something else looks low. Do you remember how much B12 you gave and the frequency of doses you gave to Sarah initially? I am not sure if age/weight would also result in me receiving a higher dose (just need to research it I guess).
 

DustyKat

Super Moderator
Sarah initially had 3 shots over 6 weeks, so every two weeks, and then 3 monthly. This is a fairly standard regime but it can vary depending on the level of deficiency. I do note that some people here are having shots monthly so there initial loading may have been more intensive than Sarah's 3 over 6 weeks.

Sarah receives Hydroxocobalamin (Neo-Cytamen) Injections and the standard adult dose is 1000mcg/ml, this is the dosage Sarah receives.

Dusty. xxx
 

Crohn's 35

Inactive Account
Hey Mike, I didnt look at the pic (sorry sqeamish and it is morning lol) two things that can help, one is use tooth paste for sensitive mouth, the only one I can use that wont make my lips peel is the Colgate for sensitive teeth...NOt the newer one. For a mouth rinse I would use Steri/sol it worked for me. I agree with the B12, I get shots once a month and if you would rather use oral, get the lcyanocobalamin is absorbs better and of course get the subliminals (under the tongue), only health food stores have those.

The Ster/sol isnt natural but should help clear it up in a jiffy. Let us know what you decide and what works!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Are you left-handed Mike? Since you say it also appears on your fingers particularly left hand, is there any chance the rash is a response to some stimulant and is spreading to your left hand by touch??
 

mikeyarmo

Co-Founder
Hi Dexky,

I actually am left-handed! That is an interesting theory to say the least! I could see that at the very least being partially responsible for keeping the rashes/wounds that do emerge from healing.

Short of wearing gloves, I am not sure how I can protect that hand to see if that is what is causing some of the issues. I am going to a walk in clinic tomrorow to see about getting a B12 injection!
 

DustyKat

Super Moderator
I'm not so sure that it is your hand causing the rash but it may be the rash on your face, as you apply the cream, causing the rash on your fingers. As you apply the cream you will probably find the ball of your hand and wrist may also come into contact with the rash/cream.

Try applying the cream with gloves on and see what happens with the finger/wrist rash then.

Prolonged use of steroid based creams can create there own problems and I think you are going down the right track in trying to find the source of the problem rather than just treating the symptoms.

Dusty. xxx
 
I know this is an old thread, but if the original poster is still on-line, did the B12 injections help? My son has just developed (rather quickly) a very similar rash to the photo that the OP posted. It developed in the course of 24 hours, so I don't know if a B12 deficiency would manifest itself so quickly. He has Crohn's managed with remicade and daily doses of cipro and flagyl (to deal with perianal fistulas). This mouth rash is a totally new development - not sure yet it's Crohn's related. Any feedback on the B12 theme would be most welcome.
 
Hi and welcome,
Sorry I'm not sure about your question but I know other can be along that can answer.
( DustyKat or David ) perhaps.
We have a wonderful Parents forum here.
Questions such a that are great places to ask.
I hope you keep us up to date on how he's doing.

Farmwife
 

Catherine

Moderator
My middle daughter had a similar rash around her lips. The steroid cream would clean the rash up and soon as stopped the rash would come out.

In she case thrush had got into the rash, and when that was treated it went away totally.
 
Last edited:
Thanks to Catherine and FarmWife. I thought my son was early with an age 5 diagnosis, but 1 1/2 years old...wow. You have had quite a journey. FarmWife, I hope a diagnosis is reached soon - we spent a year with an "indeterminate Colitis" diagnosis before it "resolved" into Crohn's. Such an odd phrase, to "resolve" into a specific disease - I always thought resolve to be more "solution"-like! Oh well. Remicade has been great thank goodness for our health plan). The perianal fistulas are worrisome - will they ever go away? I hope so. Thanks again.
 

DustyKat

Super Moderator
Mikeyarmo is still here, he has been busy with work lately but now that he is tagged hopefully he will be along.

Where is your son's Crohn's located FamilyInfo?

Has he ever been tested for B12, folate, Iron stores and Vit D deficiency?

How long has he been on Remicade?
Remicade usually has pretty good results with healing up perianal disease. Everything crossed that that is the case with your little one, bless him.

Good luck!

Dusty. xxx
 
Dusty - thanks for your note of encouragement. His Crohn's is in his colon - throughout. Also has some type of juvenile polyposis although the doctors go back and forth on whether it is Crohn's related - hard to imagine the coincidence of two unrelated GI issues, but it is possible. He has had some upper GI issues too, but they seem to have been resolved. The colon looks good, but MRI shows the fistulas and he had abscessed sores last year where the fistula came through the skin (I know I'm not describing this using proper medical terminology). I think they've checked Vitamin D, but not the others - at least not that I know. He gets blood work done before every remicade infusion, so I'll definitely check what boxes the lab requisition has checked. He's been on remicade for two and a half years. Of greater concern is he's now been on cipro and flagyll for over a year, but I guess that type of long-term antibiotic use is common for Crohn's? The fistulas are not disappearing - the opening into his perianal area just seems to be a part of his anatomy now - pretty upsetting for him, but it's not abscessed which is good.
 

mikeyarmo

Co-Founder
Hello!

Sorry for not responding sooner... I looked into taking B12 shots however I was not able to find a doctor who was willing to give them to me. The doctors I went to (just 2) were both against trying B12 shots as they thought I should just try steroid creams (or one just thought Vaseline applied throughout the day would be enough). I am not comfortable giving myself a shot and could not convince a family mother to give it to me, so I had to put that plan on hold.

I have been using a Vaseline with aloe vera for my hands/lips, which I find is almost as effective as the steroid cream a dermatologist recommended. During the summer I tried to get more sun exposure and I have tried to keep apply the Vaseline throughout the day as much as possible.

My lips are currently 99% better… there is no noticeable rash however they are stilly very slightly dry. It could be due to a combination of various factors, but I certainly have been getting more vitamin D naturally during the past couple of months with no change in the amount of B12 I get through my diet.

I am not sure if there are any possible negative effects for supplementing B12 for children, but if there are no possible side effects I would certainly consider trying it out. My understanding is that for adults there is no real consequence to trying B12 supplementation, but I really have not looked into if this is the same for children.
 
Hello,

Thank you for your excellent post and sharing of this information. I just developed this rash over the past winter. It is so embarrising. But I don't have crohns. is it possible that I have a lack of B and don't have crohns?
 
Top