! AWFUL, painful mouth ulcers.... please help if you have had them!

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LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 1/9/2009 8:30 PM (GMT -6)   
Hi everyone,

I have not posted in awhile, but lurk every few days to see how everyone is doing... :-)

Unfortunately, I have been feeling awful this past week. It all started around Thanksgiving, when I started getting very painful ulcers in my mouth. They were very red, and on my gumline, sides of my tongue, and even a bit on the roof of my mouth. They would stay for a few weeks, then go away.

I have been to the doctor 3 times since Thanksgiving looking for relief from them (every time they come back, it is worse and they stay longer). The first time they said is was "acid reflux," even though I have absolutely no burning sensation in my chest-just the terrible ulcers. Second time, they thought it was a virus and gave me antiviral medication (Valtrex, apparently, cures more than just one kind of herpes! When my husband came home with the prescription, he jokingly asked, "Is there anything you want to tell me?"). smilewinkgrin Third time at the doc, they said it was oral lichen planus, an auto-immune disorder, and gave me some prednisone. As soon as I was off of it, they came back with a vengeance.

I am literally to the point where I can barely eat and it hurts to talk. (Which is a problem, because I am a teacher and have to talk most of the day). I tried to schedule another appointment with my GI, but was told "he can't see you until March." I tried to get ahold of his nurse to (nicely) insist that he see me, but she is on vacation for the next week. So I am stuck. :(

Here is my question: after researching on the internet a bit, I found that low B12 can sometimes cause mouth sores....I recalled that my surgeon said that I would need B12 shots eventually, but not until about a year after surgery (it has been about 9 months). Has anyone ever had mouth sores that went away after a B12 shot??

Also, does the sublingual (oral) B12 work as well as the shot?? Because I can get this over the counter, and see if I get some relief soon.

Any advice and experiences that you could share would be so greatly appreciated! I know it sounds small, having mouth ulcers, but they are ALL over the inside of my mouth. :( I am pretty uncomfortable 24/7.


Thanks as always, everyone. :)

-E

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 1/9/2009 10:39 PM (GMT -6)   
Do you have crohn's? I know it can cause very painful mouth sores. Sorry, I have no clue about the b12.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/9/2009 10:42 PM (GMT -6)   
I used to get sores in my mouth all the time when I was younger, and esp after I got braces. Warm, salt water help heal them. Drs. at the time just attributed it to too much acid in my system. I was very young at the time. But I haven't had anymore of them since I had my final surgery for CD, so I'm wondering if it is an immune system thing?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


BunzSudz
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/9/2009 10:55 PM (GMT -6)   
I hope you don't think I'm a nut but the very best thing I have ever gotten to work for me for that same problem is brushing your teeth (and tongue) with Ivory soap. Yep, I know it sounds disgusting but actually it is not.

I have had that same problem as you have, with recurring mouth ulcers. I have diabetes and it's a real problem sometimes. For one thing, I found out that I am allergic to SLS and similar sulfas (which is in most shampoos, handwashes and toothpaste... it's a lathering agent). So I got rid of all the stuff I used that had that in it. Great! That helped me get rid of the sores I was getting on my head, and most of the problems I was having with sores in my mouth. But I still have the occasional flare-ups with thrush or ulcers. I'll stop using my regular toothpaste for two or three days and just use Ivory soap to brush my teeth and they heal up very very fast, sometimes within 24 hours. It used to take me weeks sometimes to get rid of a bad case of thrush, even with prescription meds for it (they don't work worth a toot for me). Now I don't have to bother with that mess anymore. I got most of my family to try it and it works for them too.

I think why soap helps has to do with the high PH of real soap (not fake soap like some of the fancier brands) but just plain cheap real soap bars work the best. Actually, Ivory is what I use because it tases the best, LOL. I think most mouth "cooties" requires an acidic environment to thrive. Soap pretty much knocks that out with it's PH being about 9 or 10.

Keep your "tooth soap" in a closeable soap dish and just use it for your teeth. Brush your wet toothbrush on it real good until you get a good thick goop worked up, then carefully brush your teeth, tongue and gums. Let the soap foam stay in your mouth for a minute or tow after brushing then rinse well. That's it. I'm tellin you true, it really works.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/10/2009 1:54 AM (GMT -6)   
I've never heard of that, but it'd be worth a try! Rinsing your mouth out with soap takes on a whole new meaning!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/10/2009 6:52 AM (GMT -6)   

Erin,

Sorry you're in pain. sad Here are some treatment tips from WebMD:

  • Try rinsing your mouth with a solution of 1/2-teaspoon salt dissolved in 8 ounces of water.
  • Another mixture that may be helpful consists of 1-2 tablespoons of Maalox mixed with one-half tablespoon of liquid diphenhydramine (Benadryl).
  • A number of medications are available over-the-counter, for example, calamine (Calamox) lotion.
  • Liquids or ointments with a numbing ingredient such as benzocaine (Anbesol, Orabase, Tanac) help relieve the discomfort of canker sores.
Hope you feel better soon!

Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/10/2009 7:33 AM (GMT -6)   

LittleE--I've had them and my diagnosis is Crohn's...They haven't been debilitating, for me, but they hurt and make eating/talking hard.  I just look at them as another Crohn's bi-product and I do the salt water for relief...

I find the soap thing VERY interesting (welcome BunzSudz)...I believe that most of our (all different people) problems are self inflicted with the products we use!  I have recently gone to all natural products(after switching to organics years ago) and find a big difference for me...

I would check with your GI...if that is not the doc you've gone to...and get their 2 cents.  Until then, I hope you can find relief!
 
Oh, here's a thought:  Cancer patients use a pepper type lollipop to numb their mouth sores...I wonder if that could offer some relief?

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/10/2009 9:23 AM (GMT -6)   
While I don't have an ostomy anymore I tend to get awful blisters in my mouth after a viral infection. They are indeed painful. The mouth wash I prefer is 1 part hydrogen peroxide and 1 part warm water. I swish and hold this solution (make enough for about 5 or so mouthfuls each time), in the exact location I have blisters, tilting my head if I have to or fanning out my cheeks to get this solution into crevices. It has a bubbling effect, you will feel it working. Don't swallow. I do this several times a day. It takes at least 2 or 3 days to see relief. I also don't rinse my mouth with water or drink/eat anything directly after swishing with this solution. There's a slight residual amount left and it's a soothing coating.

A Pharmacist gave me this suggestion years ago. My doctor suggested I buy Glyxide (sp?), which is an over the counter but pricey product, for mouth sores. The Pharmacist directed me to the correct shelf area for this product but then said - would you like to save some money? Make this solution yourself! It's so darn cheap too!

I always have 1 to 2 bottles of peroxide each winter in our medicine cabinets.

And this mixture is also good at whitening your teeth! A side benefit.....

Hope you get can this under control.
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/10/2009 9:33 AM (GMT -6)   
There is this stuff called Cur-A-Sore, it's kind of hard to find, but medicap pharmacys usually carry it. But it will knock those things out FAST!!! It burns like fire, and it also says not to use inside your mouth, but i been doing it for 15 years, lol.

UC and Chrons can both cause mouth sores and sometimes, even though the UC is gone, some of the other problems remain.
Hope you feel better soon!

cagio1
Regular Member


Date Joined Mar 2007
Total Posts : 56
   Posted 1/11/2009 1:31 AM (GMT -6)   

I am sorry about your sores.  I am from the UC forum, but I had those sores so terrible when I was put in the hospital once for the flare and sores (could not eat/talk etc)   I am also a teacher.

The antiviral Accyclovair (spelling?) seemed to help but they gave me heavy doses in the hospital.  The cause of the sores was unknown but was determined by the infectious doctors that it was due to low hemoglobim and everything else low in my body at that point (hemo was at 6.1).  It took me collapsing to get to the hospital.  (bad situation... never do that again... I hope)

Good luck with gettting rid of them.  It took about a full 5 days after the onset of that medicaiton to be able to actually eat soft foods.

 


DX with (pan colitis) UC 9/02 while pregnant
Rowasa (when needed)
Boniva Calcium multivitamin
Iron (when issues appear)
Mild bronchial asthma too
Predinose 40 mg (flaring now)
6MP 50mg started beginning of July 08


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 1/11/2009 2:53 PM (GMT -6)   
Thank you, Everyone, for all of your suggestions and support! I carefully read through All you had to say. :-)

I do have CD, so it is possible that it is Crohn's in the mouth (gosh, I hope not). I did get a mouthwash from my doctor that has the 2 ingredients that you mentioned, Cecilia, along with a numbing agent...but it seems to provide only temporary relief....

As far as the Ivory soap goes, BunzSudz, I don't think I am that brave just yet. :) I had to laugh, but I believe you that it could work. Soap, as you said, is very alkaline (the opposite of acidic), and could neutralize the acid in the mouth if that is the cause. I did take part of your advice, and sucked on a few fruit-flavored Tums (which also will neutralize acid, and probably--for me at least--taste a lot better! lol!) and they did seem to help a bit!

I have also been taking some iron and folic acid (two things I am usually low in) because I found that lows levels of them can cause mouth ulcers.

I can still say, though, that I am pretty well off compared to my health a year ago! Today, the worst thing is that I am missing eating chips and dip for the Steelers game today (hurts too much)! tongue

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/11/2009 6:16 PM (GMT -6)   
Then please just try the 1 part tap water, 1 part hydrogen peroxide. Even one swish will tell you if it's too painful to use. And it's so cheap, the smallest size bottle of peroxide is under $1. When I have painful blisters after getting over the flu, this mouth wash mixture really turns things around. And it's not painful. I just hold each mouthful where the sores are located, allowing the bubbling effect to begin. I'm so glad that Pharmacist told me this trick, years ago. He sure saved me lots of money!
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/11/2009 8:53 PM (GMT -6)   
Yes, definitely stay away from the Salt and Vinegar potato chips!! nono
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