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View Poll Results: Do you get mouth ulcers on a regular basis?
Yes 154 74.04%
No 54 25.96%
Voters: 208. You may not vote on this poll

 
01-14-2011, 04:32 PM   #61
allieinwonder
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I never get them, but when I was 19, I had a mouth full of them. The doctors were stumped and just gave me 'magic mouthwash' to numb the pain until they went away. Four years later, I was dx with Crohn's and I fully believe those ulcers were my first flare. I haven't gotten them since. Well, maybe one here and there, but not a mouthful like that first time.
I was given that stuff as well. YUCK!
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01-15-2011, 01:42 AM   #62
AndiGirl
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This is a very common symptom for me. My dentist made a comment about them years before I was diagnosed with Crohn's.
01-15-2011, 06:38 AM   #63
Nytefyre
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I don't think I've ever had a mouth ulcer!
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01-15-2011, 01:34 PM   #64
Josephine
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Got one now.
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Acid Reflux for 15 years med

Sacroiliitis and add to grew list auto immune diseases.

Now on Lansprazole 15 mg And Gavin son 5mg-10mg 3a day.

Crohns from Oct 2007
Domperidone 10 mg -20 mg, Mebeverine 135 mg,
3 a day.
Balsalazide 750 mg 3 X3 a day on going.
Bone protection.

Azathioprine is not working, still waiting to find out what next. Still on low dosage Prednisolone

Mesalamine Enema


No Wheat

English my native language and have characterizes of dyslexia.
01-19-2011, 07:57 AM   #65
chrisnsteph1022
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I voted no, then the next day developed an ulcer in my mouth. Just one so far, though.
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Stephanie
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
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01-19-2011, 08:23 AM   #66
Molly
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Cant remember the last time i didn't have a mouth ulcer lived with them persistantly for years went back and fore to docs for years so probably been living with crohns for alot longer than diognosed. Anyone got any tips for keeping them away or found something for the constant pain???
06-22-2011, 06:32 AM   #67
black caviar
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Got my first ulcer since I was diagnosed about 6 months ago, where I had heaps of them, and she's a beauty... Looks like a hole and the are all around is very red. It's doin my head in. My question is how often can I expect this, given its the first time in ages and its nothing like last time, and is there ANYTHING that can heal them but time? General ulcer cream is useless.
06-22-2011, 06:47 AM   #68
Dexky
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My son got them regularly until we placed him on B-complex vitamins and hydrogen peroxide based mouthwash. Now they are few and far between!
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
06-22-2011, 06:53 AM   #69
black caviar
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I'm on enough crap at the moment though... I'd ask my gastroentorologist except I dont have an appt. for a while...
06-22-2011, 07:00 AM   #70
Dexky
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His are just otc vitamins but many require b12 injections. You could just try the vitamins for a while. If your ileum is involved with your crohns, my understanding is that is where B vits are absorbed so it may be an easy solution to your mouth ulcers.
07-16-2011, 12:18 PM   #71
hearing aid guy
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That was one of my major problems. Once I got one it seemed like I would get 10 or more. The hurt so bad at times that I wouldn't eat for days. That is why the doctors said I had CD and not IBD
11-06-2011, 02:56 PM   #72
Stillindenial
 
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For me it is sign a flare up is coming....and the more the ulcers the bigger the flare up!
11-06-2011, 03:10 PM   #73
DustyKat
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Roo doesn't suffer with mouth ulcers.

My son who doesn't have IBD always seemed to be plagued with canker sores, they were pretty frequent and he could have two or three at a time. Did a bit of research and started him on a B Complex tablet once a day about 6 months ago and voila, he has had only one in that time.
My how things have changed!

I now firmly believe that Matt's mouth ulcers were an EIM of what was to come. He still hasn't suffered any since he took B Complex for about 6 months.

Dusty.
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12-21-2011, 10:02 PM   #74
lis16420
 
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I never did until I started taking methotrexate, now I constantly have them. they hurt. Kinda odd how methotrexate takes the sores from my stomach, but then I get them in my nose and mouth :/
12-27-2011, 12:03 PM   #75
David
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I never did until I started taking methotrexate, now I constantly have them. they hurt. Kinda odd how methotrexate takes the sores from my stomach, but then I get them in my nose and mouth :/
That's because methotrexate can interfere with various B complex vitamin metabolism, especially folate.

Talk to your doctor (don't just do it as methotrexate works by targeting folate) about supplementing with a B complex vitamin as that is what is causing your mouth ulcers.
12-27-2011, 05:41 PM   #76
tobyjug
 
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I get them as well although currently not as often as everything is settled just now. When I ocassionally do still get them, my feeling is that things are not quite right and I need to watch what I'm doing.

Another odd sympton that I can get around this time is a swollen/inflammed/sore throat. It just feels like a lump, does'nt last long, generally a day or so and can vary in size/swelling.

Never mentioned it to the docs as I'm not sure its crohns related or not. I'm keeping a watchful eye on it for now.
10-08-2012, 08:55 PM   #77
momofcrohnieson
 
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My son also suffered from mouth ulcers. For years before his diagnosis of Crohn's we were sent from one oral surgeon to another in hopes of finding some relief. Finally a pediatric oral surgeon took one look at him and suggested crohn's disease. Although he was diagnosed with crohn's a few days later there was nothing specific the doctor's could recommend to help clear up his mouth. The corners of his mouth were cracked and bleeding and there were deep whitish ulcerations in the pockets of his cheeks along the gum line of his lower molars. He would even get smaller white blisters anywhere along his gums and down his throat. His cheeks were so swollen that he had a hard time brushing his back teeth and would always spit blood into the sink when he tried brushing back there.
I stumbled upon a treatment for him through my own desperation dealing with a crohn's related skin rash he also had on the inside bends of his elbows. One night at bedtime he was scratching the insides of his elbows so much they had started to bleed, but the itch was persistant. I grab a tube of Destin diaper rash creme and smooth it over his skin and wrapped his arms in gauges for the night. The next morning the rash was beginning to dry up and the itching has subsided. We started using it every night and the rash eventually went away completely!
Well, you can not put Destin diaper creme in your mouth...but we did start to use it on the corners of his mouth along with a top coating of vaseline at bedtime. This improve the appearance of the skin at the corners of his mouth and started to heal the cracked skin.
However, he still had the painful ulcers inside his mouth. So I just went with what I knew. Destin is zinc. There are zinc logenzes and zinc sprays made for cold relief. We went to the local drugstore and bought zinc logenzes (Cold-eez) and the same product in a zinc spray. He began sucking on the logenzes 3 times a day and we would spray his mouth with 3 to 4 sprays in all affected areas at bedtime every night. Within one week the whitish appearance of the ulcers in his mouth had been replaced with new pink tissue and the swelling was beginning to go away. Within two weeks he could brush his teeth easily and there was no blood when he spit into the sink. When we tried to stop this the ulcers and the sweling would come back, but as long as we do it everyday he continues to be free of mouth ulcers!
10-08-2012, 09:28 PM   #78
ap4840
 
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Location: Harker Heights, Texas
I have had them for years with little to no relief. Last month they actually made it to my esophagus. I have tried various rinses and prescriptions. Some stuff called " Kanko " i think worked pretty good, it is sticky and wont rinse off so fast. Got it at Walgreens. Good Luck!
10-10-2012, 01:17 PM   #79
Stillindenial
 
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Horrible horrible mouth ulcers! I've had them a long time...since I was a teenager...e.g 40 years...but now I get them (a mouth full) just before a flare. As someone else has said if I slap on the bongela as soon as they start they can be made to stop there, sometimes
10-14-2012, 08:26 PM   #80
RobFromLI
 
Join Date: Oct 2012
I am in the middle of being possibly diagnosed at age (almost) 42. I have "chronic inflammation of the ileum" so far and I have to go back to the gastro in a week or so for a conference.

I have had mouth sores all my life. As a child I would get them several at a time and would have to suck soup to the back of my mouth through a straw. As an adult I've had them in the corner of my mouth where I can't talk or eat and the pain and swelling is so bad I swear I have an abscess. I've had so many on my tongue that the edge of my tongue all the way around is roughly serrated from the scarring. They have actually slowed down the past two years or so as my lower GI symptoms have gotten much worse.

There is one product I've found that is a GODSEND. It's called Zilactin. YOu have to be VERY VERY VERY patient to apply it properly. You have to dry the piece of your mouth where the sore is, which I do by drooling into the sink as I blot the area with toilet paper. THen you put a thick layer of the stuff (a brown goo kind of like melted candy) on and drool and hold your mouth like an idiot until you see the zilactin turn white and dry. At that point although you have a horrible mediciny taste in your mouth, the sore is covered and you can eat and talk for a couple of hours. It sometimes helps them heal more quickly too I've found since mine sometimes take up to 10 days to fully heal. MAKE SURE you get the brown gel version - I think there is a cream or something too but the brown gel is the one you want.

Last edited by RobFromLI; 10-15-2012 at 10:27 PM.
03-30-2013, 02:36 PM   #81
yayaboy21
 
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Please EVERYONE -- try taking 1000mg or more of L-Lysine every day, and more if you feel an onset. I had awful ulcers and this daily preventative measure has changed my life. Very cheap at the drugstore. Oh -- they tend to be horsepills, so if that's a problem take two 500s.
03-31-2013, 04:45 PM   #82
gingerbr
 
Join Date: Jan 2013
I used to get mouth ulcers frequently until I started Remicade and now I hardly ever get them. Before Remicade I had an ulcer for 4 months that would not heal, it was the whole down to the bone in my jaw, very painful. I ended up in the hospital and they injected antibiotics directly into the ulcer to get it healed.
04-01-2013, 11:28 AM   #83
paticake
 
Join Date: Mar 2013
I generally have 2-3 at a time often. In Feb. I had so many in my throat it felt like i was swallowing glass. One on the way back of my tongue abscessed and I ended up on antibiotics. When I saw my GI last week he was concerned about that.
04-06-2013, 03:59 AM   #84
cheerfull
 
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MOuth Ulcers are related to your system failing to absorb Folic Acid, iron and B12. Also a sign of malnutrition. I had them very very badly right through my mouth and throat 30 years ago, for about 18 months, until diagnosed with severe malnutrtion due to Coeliac Disease . Going Gluten free certainly helped. probably also has Crohns but by going Gluten free my condition improved drastically and I have aomnly recently being diagnosed with IBD.
04-06-2013, 06:24 PM   #85
sue85
 
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Location: dublin, Ireland
Hi all..

Currently I'm having very bad mouth ulcer..which i can better be calling throat ulcer because my throat is very pain ful...I barely can eat anything and i can't swallow anything..This is my first time getting this bad ulcer since i was diagnosed with Crohns..Anyone with these symptoms, please help me on what you did to make it reduce or go away coz I can even swallow my medicines..Very much in pain. Please help me in what type of food i shall take and so on...

Regards,
Lily
i get them every 3/4 weeks and the only thing that seems to work for me is an oral cream called daktarin,you can get it over the counter (in ireland anyway not sure about other places) its not expensive and the ulcers are gone within a few days,hope this helps
04-06-2013, 06:29 PM   #86
sue85
 
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ive tried using listerine mouthwash and bonjela, they numb them for a short while but thats it, the pain soon comes back and it feels ten times worse. they are the most frustrating thing ever and the pain is getting unbearable.
you should try daktarin gel you can get it over the counter in ireland so i assume you can in the uk too, its the only thing that works for me the bonjella never did
04-07-2013, 07:46 AM   #87
bronnie43
 
Join Date: Apr 2013
Location: Perth, Western Australia, Australia
I have been getting painful mouth ulcers since childhood, similar to others, in breakouts of 5-10 ulcers from the tongue to lip to throat... I found the breakouts also came with fever, swollen glands and general 'fluey' feeling. Generally not very nice! Mine has been almost cured with salofalk, which I have been taking on and off since diagnosis, but full time approx last four years. I recently changed from salofalk to colazide due to stubborn flare up (also not responding to prednisolone) and the mouth ulcers came back, but the bowel got better! GI explained that salofalk goes into the bodies system (hence why it has treated the mouth ulcers (note it has also treated my genital ulcers, for those who also get them)), whereas colazide is contained to the bowel. So now I am taking both, but GI would like to start me on Imuran. If salofalk plus colazide keeps all symptoms at bay, I am inclined to keep doing that rather than try imuran (which scares me). Any thoughts or advice?
04-07-2013, 05:46 PM   #88
CheerBear12
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I get white sores on inside of my lip no sooner they go they bk again! I've been diagnosed with indeterminate colitis and got an ileostomy. I'm scared its crohns now got my pre op on Thursday for next op so will mention it
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05-09-2014, 01:47 PM   #89
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I'm currently in the process of being diagnosed, but I get mouth ulcers constantly. They are so annoying...
05-13-2014, 10:00 AM   #90
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I never ever used to suffer from mouth ulcers but since I first saw the GI specialist 2 months ago, I have had so many I've lost count Terribly painful and annoying! I try using Bonjela, Loperamide etc but they soon pop back up. The life of a Crohnie ey!
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