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Crohn's Disease Forum » Extra Intestinal Manifestations » Mouth » Help for mouth ulcers - any new ideas?


 
07-11-2011, 07:06 AM   #1
jazmac
 
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Help for mouth ulcers - any new ideas?

I have just stopped Humira ( doc likes to call it a "humira holiday" as he wants me to take again) I found it causes festy lip sores like cold sores but they have been there since I started back on humira in february. I had them last year when I started Humira but didn't associate the 2 and went to dermotologist who checked for herpes and then took a biopsy - ouch - to tell me it's inflammation. I stopped the humira and the lip sores went away but the mouth ulcers flares to the poiint that even water hurts. I couldn't bear it so went back on the humira. BUT I am sick of these lip sores so am into my second week humira free with much mouth pain. I have also been on LDN since Jan but I have only just realised I was taking .3mg instead of 3mg( I use a syringe to measure and have been confused for 6 mths. Lets call it crohns brain fuzz.) I am slowly increasing LDN but really don't want to start back on Humira. The funny thing is that even on such a small dose of LDN my bm reduced massively. I know the ulcers are systemic and as all the specialists say "once you get the crohns under control you will fix the ulcers" - i see an oral pathologist - mouth wash dexmethisone 2 x a day am currently on reducing dose of prednisone. I have just found bonjella to provide some relief when I eat, but the ulcers are even on my tongue so I can't taste anything. ANY NEW SUGGESTIONS WELCOME
07-11-2011, 07:49 AM   #2
StarGirrrrl
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Mine got so bad that even Bonjela was useless, 5 mins after applying I wanted more, more, more!

Someone on here put me onto Gengigel. It's a more herbal based gel that works really well, and the best part is that you can use as much as you want, as often as you want.
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07-11-2011, 08:04 AM   #3
DustyKat
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Matt suffered with mouth ulcers before I knew he had Crohns. I started him on B Complex tabs and they worked a treat.

Dusty. xxx
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07-11-2011, 12:22 PM   #4
outlier
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get a anti-bacterial mouthwash without alcohol, helps get rid of them faster. the gel numbing things just annoy me. also try rinsing your mouth with Benadryl that does a surprisingly good job of numbing.

rinsing your mouth with vodka, or just drink it also does a great job of dealing with them.
i think the sore crohn's cause are twice as painful as regular ones
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07-14-2011, 05:31 AM   #5
jazmac
 
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Thanks for the tip on the Gengigel - am in the process of purchasing it from ebay - really eager to try it but its going to take a few weeks to get to Australia.

Bendryl sounds like it would sting but once the numbing effect of bonjella no longer works I may just try it.
Not sure about vodka - had a very rough night when I was 17 and still cant stand the taste of vodka.
I agree crohns ulcers are much worse than the average persons.

Thanks for your advice
07-14-2011, 12:17 PM   #6
outlier
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I have a feeling any alcohol high proof would do the trick
09-04-2011, 02:54 PM   #7
Giggles
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Hi I have suffered with mouth ulcers and I started using Lycine. Its a tablet u can get it from the herbal shop. It takes about 2-3 weeks to start working but I swear by it. I also take a vitamin B supp. also and I haven't gotten ulcers in ages. Hope it works for u too
09-04-2011, 03:24 PM   #8
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I bought Anbesol - it was largely useless.

Best remedy was rinsing mouth out with salt water, it quickly sorted out the lesser ulcer and deadened the mothership for a while too.
09-05-2011, 06:31 AM   #9
Kacey
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Before I was diagnosed, I went to the dentist with the problem of canker/mouth sores. He prescribed me a cream, it was grainy and brown. I wish I could remember the name of it, but it worked and it was a GREAT relief for the pain. I was finally able to eat. I had cankers so bad, they went all the way down my throat. It was awful. Good luck, I feel you pain!
09-16-2011, 10:59 AM   #10
flowergirl
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i'm currently on a steroid cream for my mouth ulcers. i have found that large doses of probiotics makes my mouth ulcers go away completely. unfortunately they irritate my rectum/fistula, so it's not an option for me anymore.

make sure your toothpaste doesn't have sodium laurel sulfate (SLS).

l-lysine has helped me in the past.

there's also a good mouthwash that you can order online. it's made by prevention labs.
09-20-2011, 10:27 PM   #11
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My daughter has a prescription for "magic mouthwash". I can't remember what all is in it but I know benadryl and something numbing. They compound it at the pharmacy. It seems to help with the pain but doesn't prevent, cure, etc. It's purely a comfort thing.

J.
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09-21-2011, 05:27 AM   #12
Dexky
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Like Dusty suggested, extra B vitamins seemed to help with EJ's tongue ulcers. We also use Scope White which is a hydrogen-peroxide based mouthwash. Since starting this, he will still have an occasional sore but they seem to be short-lived and so far(knock on wood) few and far between.
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09-21-2011, 03:12 PM   #13
alfredothebarber
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The best thing for mouth ulcers (to make the pain go away) is to rinse with salt water. About a cup of warm water with a teaspoon of salt. Stir until it dissolves. Then, in small amounts, swish it around in your mouth for 30 seconds. Spit. Repeat!
09-25-2011, 03:44 PM   #14
scoutfinch
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I've found that ice water numbs down canker sores pretty well. Quick relief - but temporary. I hope you find something that works well - whether it's drugs or not.
10-10-2011, 04:54 PM   #15
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I rinse my mouth with warm salt water- 6 ounces warm water to a 1/4 tsp of salt. I do it as many times a day as I want, helps heal them up fast.
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10-10-2011, 05:28 PM   #16
kyi
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anbesol worked for 10mins, i use mouthwash sometimes stings but helps sort them out abit, but used salt water as a mouthwash seemed to do the trick alot better defo what i would do, i used rock salt in warm water xx
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10-20-2011, 05:36 PM   #17
StarGirrrrl
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I wanted to share my latest bad ulcer! Is a cross between a sore lump and ulcer on the top of my jaw, about 6 teeth in length. Tiny part has attached to tooth (have had ones in the past attach to several). Been throbbing and making me feel physically sick. Luckily the Gengigel I use has been helping, although it is so bad I am considering a mouthwash, Corsodyl, which is great stuff when you have oral problems (it's not a daily use, but a medical one you can buy over the counter).
10-20-2011, 06:33 PM   #18
scoutfinch
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I wanted to share my latest bad ulcer! Is a cross between a sore lump and ulcer on the top of my jaw, about 6 teeth in length. Tiny part has attached to tooth (have had ones in the past attach to several). Been throbbing and making me feel physically sick. Luckily the Gengigel I use has been helping, although it is so bad I am considering a mouthwash, Corsodyl, which is great stuff when you have oral problems (it's not a daily use, but a medical one you can buy over the counter).
SIX teeth in length?! Ouch! Is it at least on just one side of your jaw - so that you can at least chew on one side without too much pain? I once had an ulcer/sore on my throat (small, but so freaking painful) and had to force myself to eat even though each swallow was hell. I hope you get some industrial grade medicine to counter this!
10-21-2011, 09:03 AM   #19
StarGirrrrl
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Yep one side luckily Got a tuna mayo subway for lunch which I think will go down quite well.

Is better today, a sore, yukky, icky mass now, the throbbing and hard parts have gone. Still making me feel sick though.

I get them this bad but not often. If it happens more I will go to GP for something.
10-30-2011, 06:45 AM   #20
rob101
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god I hate these things ! have a large one on the bottom of my tongue that is giving me earache and hurts like crazy when you eat. Arggggh !
10-30-2011, 10:50 AM   #21
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definitely buy some sea salt put some in a mug, pour on boiling water, leave to cool a bit, then swish, swish, swish. keep at it, it does help
10-30-2011, 03:26 PM   #22
25times
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I've ALWAYS had problems with mouth sores. I usually get between 8-15 at a time. My mom always told me to rinse with salt water, and alot of the time it works. Now, I use the salt water and brush my teeth like crazy, even though it hurts sooo bad. They used to take about 1.5 weeks to clear up. Now, with brushing my teeth constantly, they heal in about 3-5 days. Peroxide mixed with water helps too.
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10-30-2011, 05:12 PM   #23
Spooky1
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yes, i agree samantha, i forgot the peroxide, helpful as well as swishing with salt
10-30-2011, 05:19 PM   #24
rob101
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Thanks Spooky and 25 I have been swishing and swilling all day with salt water helps a bit ,havent tried the peroxide yet ,will look out for some tomorrow.
12-16-2011, 08:27 PM   #25
David
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Here's a little backup as to why the Vitamin B Complex supplements help with mouth ulcers: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001394/

A common symptom of folate (aka vitamin B9) deficiency is mouth ulcers according to the link above. People with Crohn's disease are COMMONLY deficient in Folate and some of the medications Crohnies take also interferes with folate metabolism.

If you have mouth ulcers, try a quality complex B but also be sure to get your vitamin B12 levels checked as supplementing folate can mask symptoms of B12 deficiency which are also common with Crohnies.
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02-13-2012, 05:55 PM   #26
Traverse
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Watch your diet. I personally am frequently fighting with oral ulcers, and very often they are diet related. For example, eating things with nuts, or acid or sugar are sure fire ways to give me oral ulcers. Try keeping a food journal, and in it keep track of how your sores are and it may help you identify if any foods might be giving you trouble.

Another thing to do is try toothpaste without Sodium Lauryl Sulfate in it. It may not help, but has helped me in the past.

Nutrition (as noted) is also very important. Things like Magensium, Zinc, B12/B9, and potentially Lysine. I personally go for foods rich in those minerals, such as clams / shellfish and beans, but supplements may work for you as well.

Oh yeah, and in my experience meticulous oral hygine can help as well. Brushing freuqently, flossing at least once, and rinsing with antiseptic mouthwash at least once a day has helped them heal more quickly or at least hurt less (Even if listerine really hurts while you swish it, it may be worth it to use something less harsh).
02-14-2012, 04:21 PM   #27
Samboi
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I have mouth ulcers as a constant feature.
I take B complex and folate.
Clorahexidine (sp?) mouthwash like Savacol every few hours.
Kenalog overnight (this clears them up very rapidly).
And old school toothache remedy from the local chemist that is made from cloves for when I need to deaden them and eat.
I also keep an eye on my neutrophil count - when that dips - the ulcers appear.

I currently have one at the back of my throat giving me an ear ache. Ouch!
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02-24-2012, 05:54 AM   #28
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A lot of the remedies I've found were as a result of talking to my dentist about my crohn's issues. None of them are that pleasant, but they do help in making it easier to eat and talk.

- The Magic Mouthwash listed above: there are many variations on the formula. The prescription I have currently is Lidocaine, Nystatin, Benedryl, Maalox. It's gotten me through some pretty bad mouth sores. I have read that in studies, the effectiveness was disputed but I find it's more pleasant than saline alone.

- Viscous Lidocaine also has been very effective for me. I have crohn's activity in my esophagus, which I can feel in my ear constantly when I'm having disease activity. Using the Viscous Lidocaine numbs things long enough to eat. It doesn't have much of a taste, it's just a thick slime, not exactly appetizing but the plus side is that it works quickly.

- Oralone, generic name Triamcinolone Acetonide Dental Paste. Tasteless, kind of a weird texture. It's a topical sticky goo which I've seen in being effective for resolving the sores. It's listed as being a topical corticosteroid. It makes the area feel better quickly. I've had it resolve raised and white sores overnight.

- Antihistamines. Can help with the inflammation.

Also, as soon as you get rid of your mouth sores, be sure to throw out your toothbrush and get a new one.
03-09-2013, 01:37 AM   #29
Leone
 
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I have just stopped Humira ( doc likes to call it a "humira holiday" as he wants me to take again) I found it causes festy lip sores like cold sores but they have been there since I started back on humira in february. I had them last year when I started Humira but didn't associate the 2 and went to dermotologist who checked for herpes and then took a biopsy - ouch - to tell me it's inflammation. I stopped the humira and the lip sores went away but the mouth ulcers flares to the poiint that even water hurts. I couldn't bear it so went back on the humira. BUT I am sick of these lip sores so am into my second week humira free with much mouth pain. I have also been on LDN since Jan but I have only just realised I was taking .3mg instead of 3mg( I use a syringe to measure and have been confused for 6 mths. Lets call it crohns brain fuzz.) I am slowly increasing LDN but really don't want to start back on Humira. The funny thing is that even on such a small dose of LDN my bm reduced massively. I know the ulcers are systemic and as all the specialists say "once you get the crohns under control you will fix the ulcers" - i see an oral pathologist - mouth wash dexmethisone 2 x a day am currently on reducing dose of prednisone. I have just found bonjella to provide some relief when I eat, but the ulcers are even on my tongue so I can't taste anything. ANY NEW SUGGESTIONS WELCOME
Hello, my name is Leone, I have had crohns disease for 10 years and have had terrible mouth ulcers called canker sores and also sores on my legs. I dont get them anymore as I take 5mls of olive leaf extract daily with food, swill it around your mouth before you swallow, works wonders. Can buy it from health food shops or some chemists. Wishing you the best
03-09-2013, 01:55 AM   #30
Samboi
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I actually spoke to my haemotologist about my mouth ulcers.
After discussion she acknowledged that they were not from my CD - but were because of my very low white blood cell count - total lack of neutrophils.
She increased my dose of neupogen - and voila - a miracle. For the first time in about five years - I am untroubled by mouth ulcers.
The dosage wreaks havoc with my CD though - always pushing me to the edge of flare.
But it is worth it.
My quality of life has improved dramatically.
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