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Mouth Ulcers and Crohns?

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Crohn's Disease
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Posted 3/23/2008 9:44 PM (GMT 0)
My son, 16, is undergoing testing for Crohns.  He recently started with mouth ulcers and the doctor said this could be related to Crohns.  Has anyone had these?  They are very painful and swollen, any advice for treatment other than magic mouthwash?

Thanks very much.

Katherine 

Posted 3/23/2008 9:54 PM (GMT 0)
I used to get these white ulcers all over my nouth, I always put it off to being cold sores but none of the over the counter medicines clear them up. I wasn't until I started getting treatment for crohn's that they stoped and went away. I have not had one since. My G.I. said they were comon in crohns patients, called them peptic ulcers I think. Good luck hope all goes well with the doctors.

~Jason

Posted 3/23/2008 10:27 PM (GMT 0)
It can very much be related to CD, I used to get awful mouth ulcers especially on the roof of my mouth, deep, long and vey painful, there is hope though, taking probiotics daily (I use one called primadophilus reuteri made by natures way) has kept them from comming back...probiotics are essential for IBDers, if your son isn't taking them daily he should (even if in remission).

IBDers are also prone to becomming lactose intolerant and probiotics aid with that as well...it sure cleared up my lactose intolerance issues.  We are also prone to bacterial overgrowth which can increase issues with mouth sores and IBD symptoms, another excellent reason to take probitoics indefinitely.


:)
Posted 3/23/2008 10:57 PM (GMT 0)
See if his doctor or dentist can prescribe Kenalog in Orabase for them. It is a little tube of this paste type stuff. You put a tiny bit of it on at night and it will help them go away more quickly. Mine used to last about 2 weeks each and this cuts them to about 3 days. Sorry for his pain, those little buggers are really miserable.
Posted 3/23/2008 11:12 PM (GMT 0)
Thank You, I will ask about Kenalog. The sores are swollen, his right cheek looks like he has a golf ball in it. I don't know if this is related to Crohns or not, he has not officially been diagnosed. His Iga is low and he has lost about 8 lbs, has stomach pains. The magic mouthwash might be working, maybe without it things would be worse, but they are bad enough with it too. I hope he can get some relief. I asked about steriods but they said it wouldn't help.

Katherine
Posted 3/23/2008 11:20 PM (GMT 0)
For immediate relief put a salt water paste on them or gargle with salt water it will hurt like #### for about five seconds then you get relief long enough that you can eat.
I have found that taking 1000mgs of Lysine each day clears them up quickly.
Sj
Posted 3/23/2008 11:37 PM (GMT 0)
The magic mouthwash is a combo of three drugs, one numbs it. What is the connection with Lysine? He takes a folic acid now, 1mg a day but I guess it might not be enough.

Katherine
Posted 3/23/2008 11:38 PM (GMT 0)
Does anyone know about a low Iga in relation to Crohns?
Posted 3/23/2008 11:39 PM (GMT 0)

softballfan said...
Thank You, I will ask about Kenalog. The sores are swollen, his right cheek looks like he has a golf ball in it. I don't know if this is related to Crohns or not, he has not officially been diagnosed. His Iga is low and he has lost about 8 lbs, has stomach pains. The magic mouthwash might be working, maybe without it things would be worse, but they are bad enough with it too. I hope he can get some relief. I asked about steriods but they said it wouldn't help.

Katherine

I find that they said steroids would not help strange, before I was diagnosed with crohn's I was given a short dose of predisone to help clear up the ones I had. It help me immensly.

~Jason

Posted 3/23/2008 11:42 PM (GMT 0)
I was surprised too. Steroids seem to be the cure all, but with a price in the long run. I am going to take him in tomorrow to get checked out again. Also, he will need to go to the lab for the testing for Crohns, they mail it to California to the prometheus lab. We live in VA, I don't know how long it takes to get the results. The doctor said they would look at putting him on remicade if the tests are positive.
Posted 3/23/2008 11:55 PM (GMT 0)
I've definitely had the mouth sores. It's like someone took a knife and cut up my gums and the inside of my cheeks. I usually get them during a bad flare. SUPER tough to talk with them. I used a liquid mouth rinse called ULCER-EASE which helped somewhat.
Posted 3/24/2008 12:52 AM (GMT 0)

softballfan said...
I was surprised too. Steroids seem to be the cure all, but with a price in the long run. I am going to take him in tomorrow to get checked out again. Also, he will need to go to the lab for the testing for Crohns, they mail it to California to the prometheus lab. We live in VA, I don't know how long it takes to get the results. The doctor said they would look at putting him on remicade if the tests are positive.

Keep us in the loop. If the test come back positive remember this fourm it is a great reasource. You can also go to http://www.ccfa.org/ It is the crohn's and colitis foundation of america or http://www.crohnsandme.com/Default.asp. Both Have alot of information that can answer alot of questions.

~Jason

Posted 3/24/2008 12:57 AM (GMT 0)
There is really good info on IgA deficiency here:

http://www.primaryimmune.org/pubs/book_pats/e_ch04.pdf

Posted 3/24/2008 1:00 AM (GMT 0)
Thanks very much!
Posted 3/24/2008 2:40 AM (GMT 0)
Check on a paste called Aphthasol. It's prescription only and meant to cut the pain/healing time in half. It's helped me so much!
Posted 3/26/2008 2:28 AM (GMT 0)
I've also been suffering terribly from mouth ulcers recently. Last i counted i had 15 at one time!! It makes it so hard to eat and talk!

I have picked up an ointment from the chemist, just ask your local, it is dabbed on every three hours and contains a local anaesthetic and antibacterial properties, so it will numb the pain and help clear them up! It seems to be doing the job but thenagain I have been suffering from these for a few days now!

 

Posted 3/26/2008 1:59 PM (GMT 0)
Thank You!
Posted 10/24/2008 3:44 AM (GMT 0)
I have suffered from bouts of mouth ulcers for years. They started to get really bad when I was 19. I have tried every medicine in the book, from washes that numb the pain, to steroids that make the ulcers vanish within a day. My suggestion, prednisone, on the first day you feel them coming on. Work with your doctor to get the right mg figured out, it's not a drug you want to take every day. I can do a 3 day blast of prednisone that tapers down - if I start it on time, right when I feel the ulcers coming on, it wipes out them out before they start to get painful and it's like I never had them. The mouthwash for me was no good because the ulcers were so bad that temporary relief, while welcomed, was not a real solution. Prednisone is cheap, and if managed properly will get you through this, but please talk to your doctor...it's powerful stuff, with plenty of nasty side effects.

Good luck, and my thoughts are with everyone that suffers from this awful, awful illness.
Posted 10/24/2008 4:01 AM (GMT 0)
I had terrible mouth ulcers that would come and go and it wasn't until I started taking primadophilus reuteri made by natures way daily (it's been 4ish yrs now) that finally stopped them from comming and no nasty side effects, but definitely benefits with crohn's symptoms as well.

:)
Posted 10/25/2008 2:30 AM (GMT 0)
One of my first signs was that of aphthous ulcers in the mouth. They went away after I went gluten-free.

The strangest symptom was that when I would extend my tongue to the extreme right or left, it would hurt at the base of the tongue on the opposite side, where the mucosa was being stretched.

I have since discovered that certain B vitamin deficiencies may be caused by Crohn's, and that some nutrient deficiencies have very odd effects- including the formation of oral ulcers. Ergo, I suspect these are the result of malabsorption- or, in the case of B vitamins that are produced by our intestinal flora, changes in those flora in which the organisms that make the right B vitamins have been displaced.
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