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Does anyone else have recurring mouth ulcers without GI symptoms?

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Crohn's Disease
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Posted 6/21/2012 11:30 PM (GMT 0)
Since the beginning of this year(dx almost 8 years ago) I have had mouth ulcers off and on. This is now the third episode this year where they started up and are extremely painful and I have tons of them BUT I have little to no actual GI issues. I have had concurrent sinus issues as well as fevers, but no active GI problems. They have been severe enough the first time to require hospitalization because I couldn't eat or drink, and the second time around we nailed it with prednisone before it got out of control, and now we are trying to just take my Cimzia dose early and then double the dose(again) to see if that will help to stop these episodes(fingers crossed I can stay off pred this time). Currently, I cannot tolerate solid food at all, just liquids and Ensure shakes and the like.

My dr says he has no other patients with a pattern like this where the mouth ulcers get this severely without an active flare. Has anyone else experienced this or heard of this?? Any info would be much appreciated.
Posted 6/21/2012 11:48 PM (GMT 0)
I used to get them horribly...but not since I started taking probiotics daily and indefinitely....it's been over 5 yrs since I've had a single one and I used to get them quite often...they were very deep in the roof of my mouth and super painful...glad those days are behind me.

Yes, you can get them whether you're flaring or not, but it's more common for them to be an indicator of a flare coming on or during a flare already in process.
Posted 6/21/2012 11:53 PM (GMT 0)
you can get severe canker sores even without crohns. Alot of different diseases can cause mouth ulcers. They are horrible to deal with. I hope you feel better soon.
Posted 6/22/2012 3:45 AM (GMT 0)
Yes. about once a year. After 10 or more painful days and lots of weight loss I givein and take prednisone. My gut symptoms have been in remission for 4 years. Go figure....
Posted 6/22/2012 1:59 PM (GMT 0)
Thanks for the replies. Good to know I am not the only one with these isolated symptoms! And you guys definitely get how crazy painful these sores are, the worse ones are on my tongue. I do think this is related to my UC/Crohn's as it seems part of an overall inflammatory response with sinus issues, sometimes fevers and skin issues like erythema nodosum that I struggled with at the same time.

I have been taking VSL#3 for quite a while, years actually and recently switched to the VSL#3 DS and still this keeps happening..I really think this is my body's way of telling me its just not ready to settle down yet and/or this is my body's version of a flare.

Really hoping I can avoid prednisone, I think I can, it will be my 3rd time on it this year if I have to do it(if that doesn't say I am not in remission, I don't know what does). My doc says we will just throw in the towel with Cimzia soon if doubling the dose again doesn't stop these episodes from happening. I kind of want to chuck it now and just go to Remicade, I felt the same way last year when I knew Humira wasn't doing jack for me, but I get that he wants to totally exhaust this option first.

For now, I will stick to liquids and very soft foods to make sure I am getting enough calories, not eating and drinking is what landed me in the hospital last time.

Hoping for calm times!
Posted 6/25/2012 5:04 PM (GMT 0)
I seem to get canker sores without flares. Mine aren't too horrible, but I tend to get a few at a time and sometimes one will really flare up and hurt. For me it doesn't usually go along with any other symptoms.
Posted 6/25/2012 5:43 PM (GMT 0)
Ive had them chronically in the past. Now if I start to feel that old familiar pain coming, I take L-Lysine suplements. You can buy them at most drug stores/health stores. Taking them reguilary is syupposed to prevent mouth sores, but I just use them as needed. They definitely shorten the time of an ulcer, and in your case a larger dose may be in order, like one or two a few times daily until they are under control. Look it up online. You'll find more info.
Posted 7/1/2012 1:52 AM (GMT 0)
For the past 9 months I have been having lot's of coldsores, without being in a flair and no GI issues. Feel more fatigued!
Posted 7/1/2012 6:51 AM (GMT 0)
Thanks for all the replies and advice everyone. The freaking mouth sores are finally on their way out, still not eating many solid foods until the bad ones on my tongue heal, but very slowly they are healing.

I knew I couldn't be the only one who gets these infuriating things so often and so bad without a lot of other symptoms!
Posted 7/1/2012 1:34 PM (GMT 0)
My son now 32 has had mouth ulcers for 13 years. I had taken him to almost 30 doctor's before we finally got it right. We always thought the sores were Crohn's related but have come to find out he has Bechet's Disease. I have attached a link for you to look at.
Have you tried Remicade? It seems to be the only thing that has kept my son's Bechet's in some sort of remission. I have been on Remicade for the pass 12 years for Crohn's and it has worked wonders for me. Good luck, those mouth sores are horrible.
http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260521
Posted 7/2/2012 12:44 AM (GMT 0)
I have had them long before my Crohn's symptoms started. I experienced this severe case where you can't eat or drink when I was on methotrexate. At that time, I used to take folic acid supplements. Now, I am not on MTX any more but still get them. Sometimes, I attribute them to my GERD. I too have sinusitis but it is caused by GERD. Other times I think it is related to vitamin deficiency, esp when ulcers are accompanied by brittle finger nails and bleeding skin cracks. Why don't you ask your doc for folic acid supplements?
Hope you feel better soon:)
Posted 7/2/2012 3:25 AM (GMT 0)
I have had them too, it could be due to my Celiac or Crohn's.
Posted 7/2/2012 12:45 PM (GMT 0)
So sorry to hear about your problem - not fun!  I experience them too and have since before I was diagnoised with Crohn's in 2005... I have lots of esophageal and mouth issues with my Crohn's - have since the beginning. I've been on Humira for the last 4 years, Remicade  before that...  They don't seem as bad with the Humira - however, if I feel them coming on I use my Magic Mouthwash - it seems to get them under control pretty quickly.  Your Dr. can call in script for MM and they make it at the pharmacy - it's inexpensive and I think it's wonderful.  It contains - maalox, xylocaine and something else -can't remember right now, but it numbs them up for a little bit - and if you use it several times a day holding it in your mouth for as long as possible, it's not just swish and swallow - it  has been helpful to me.  Maybe that could give some temporary relief to you...  Good luck with it!!
Posted 7/9/2012 1:35 AM (GMT 0)
Thanks everyone! Its hard explaining to someone who has never had these horrid mouth ulcers how bad they really are, but you all (unfortunately) get it, and for the empathy I am very grateful.

@chughes59, I was very intrigued at your suggestion about Bechet's disease. I am in fact starting Remicade soon, so if it turned out that I have Bechet's, I guess I am on the right track regardless. I do have the mouth sores and skin issues(erythema nodosum), but thankfully none of the eye issues or other features of that disease. I truly feel for your son by the way, it sounds like a horrible and very frustrating disease.

@minniedoty, I do get the bleeding skin cracks at times, I just thought it was a feature of being on a biologic and not healing well, but interesting that you mentioned that. I have been taking several supplements, one of which does have folic acid in it, I will check how much it has and look into taking more.

@SheronS, the magic mouthwash sounds the same as stomatitis cocktail I finally got a rx for--lidocaine, benadryl and maalox. Kind of helps for a bit, I truly can't stand lidocaine, it makes me gag and want to throw up, but thankfully these things are on the way out. I was on Humira last year, unfortunately didn't do anything for me except cause me to get several sinus infections that caused crazy GI upset and eventually we gave that up(I was on it for only about 6 months). Then we tried Cimzia, which saved my colon, but after two months I started getting sinus infections again, then the mouth sores started as well as the skin issues. With no relief for longer than a month and a couple rounds of prednisone and a hospital stay, I just begged my dr for Remicade instead and we are starting it in a couple weeks. Who begs their doc for Remicade anyway? Only me probably.
Posted 7/14/2012 5:50 PM (GMT 0)
I have been having sores in my mouth for ages. But for the past 5 years they are now in the corners of my mouth. It can be described like fissures that are usually found on your rectum in the corner areas of my lips. I don't understand how to treat them. They only appear when my stomach is upset. I have tried hydrocortisone cream, anti-fungal cream (which seemed to work the best), muliples of chap-shik brands, neosporin, triamcinolone for your mouth, and mixtures that I have put together in the pharmacy where I work. I have talked to my GI's and they think it is either a sign of dehydration, fissures, or stress with vitamin deficiencies. I was taking a multvitamin but with all the meds I take now I stopped. The MV didn't effect the sores. Do any of you have sores of this nature?
Posted 7/14/2012 5:57 PM (GMT 0)
To answer your question better, sorry, I did have the bad sores as you are describing when my crohns was first diagnosed. This is how I received my diagnosis. I too couldn't eat or drink due to the ulcers being down my thoat and all over my mouth. They gave me hydrocodone liquid for pain. You can also get other pain medication compounded to help you swallow more comfortably. When I was started on pred the sores/ulcers went away. I haven't had it this bad since. I am so sorry for your pain and struggles. Please ask for something for the pain. You don't need to suffer so much. My ENT MD that I went to for the ulcers told me it looked like crohns to him and immediately sent me to our local GI who did a small bowel follow through (being 12 years ago) and I was diagnosed with crohns right away. They made me stop work for 6 weeks but I was not (at that time) hospitalized. I was on a high dose of pred at 60mg which made me crazy so I had to go down. I have had crohns flares off and on but mainly on ever since.
Posted 7/14/2012 5:57 PM (GMT 0)
To answer your question better, sorry, I did have the bad sores as you are describing when my crohns was first diagnosed. This is how I received my diagnosis. I too couldn't eat or drink due to the ulcers being down my thoat and all over my mouth. They gave me hydrocodone liquid for pain. You can also get other pain medication compounded to help you swallow more comfortably. When I was started on pred the sores/ulcers went away. I haven't had it this bad since. I am so sorry for your pain and struggles. Please ask for something for the pain. You don't need to suffer so much. My ENT MD that I went to for the ulcers told me it looked like crohns to him and immediately sent me to our local GI who did a small bowel follow through (being 12 years ago) and I was diagnosed with crohns right away. They made me stop work for 6 weeks but I was not (at that time) hospitalized. I was on a high dose of pred at 60mg which made me crazy so I had to go down. I have had crohns flares off and on but mainly on ever since.
Posted 7/14/2012 5:57 PM (GMT 0)
To answer your question better, sorry, I did have the bad sores as you are describing when my crohns was first diagnosed. This is how I received my diagnosis. I too couldn't eat or drink due to the ulcers being down my thoat and all over my mouth. They gave me hydrocodone liquid for pain. You can also get other pain medication compounded to help you swallow more comfortably. When I was started on pred the sores/ulcers went away. I haven't had it this bad since. I am so sorry for your pain and struggles. Please ask for something for the pain. You don't need to suffer so much. My ENT MD that I went to for the ulcers told me it looked like crohns to him and immediately sent me to our local GI who did a small bowel follow through (being 12 years ago) and I was diagnosed with crohns right away. They made me stop work for 6 weeks but I was not (at that time) hospitalized. I was on a high dose of pred at 60mg which made me crazy so I had to go down. I have had crohns flares off and on but mainly on ever since.
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