Crohns Attack of the Roof of Mouth and Face

[PENWESTERN]

Hello,

I joined today because I have questions on a severe Crohns Attack that is nothing like my last one in 1999.

I had a severe crohns attack in mid Nov. I only had ileum involvement in the past and was diagnosed 9/9/99.

This time was much much worse. I never felt a stitch in my intestines though I have a stricture. I arrived at ER dehydrated, all vitals failing and then in ICU.

They gave me IV Prednisone for the first time in a major dose and maybe that triggered the mouth ulcers or did Crohns trigger it? The ICU people did not know.

The ulcers landed under my teeth and on the roof of my mouth. Then my neck and my forehead and my lip blistered. The nurse thought it was herpes simplex which I never had in my life. The Dr. said Crohns.

Whatever it has been over a month and the red blotches remain behind on my face in those three spots.

The four ulcers on the roof of my mouth healed and are now big white spots. All my gums inflamed but they are now fine.

They feel real funny = gooey - not right.

Now food doesn't taste the same. It seems the roof of my mouth may be pealing.

Anyone know if I will recover without the red spots and get my roof normal?

I am currently tapering PRED at 30 mg/day, Imuran 50 MG and start Remicade injections in mid Jan.

The PA does not know but thinks perhaps once REMICADE starts my mouth might heal?

Anyone have first hand experience?

My Dentist by the way said he never knew crohns appear in the mouth and said they looked very painful and asked me how I stand it? I was using Listerine per the Nurse in ICU.

He said NO NO NO - gargle with peroxice (no alcohol) and if you like buy some more expensive Glyoxide.

Also - my sinuses bleed and the mucous still builds up is hard and when I finally get it to blow out is dried blood. Anyone have it hit the sinuses?

First day on this board so Thanks!

 

[Colt]

Crohns can affect any part of the digestive system and even other parts of your body like your joints and skin. Mouth ulcers to some extent are a rather common thing for crohnies. Involvement of the mouth to the extent that you have isn't common, but is certainly possible in severe flares like you apparently went through. Your mouth can be hit just as hard as your intestines. Anything that can happen in your ileum can happen in your mouth including strictures and fistulas. Granted no one's likely to not realize what's going on and let the scar tissue build up in your mouth without doing something.

On the other hand prednisone can cause mouth ulcers in some cases and it's possible that it simply boosted the ulceration already present by limiting its ability to heal and causing the ulcers to grow and become more serious. Prednisone slows wound healing and so while it may have stopped the mechanism doing the damage it could lead to the damage taking what seems like an unusual amount of time to heal. On top of that you're on Imuran which is an immuno-suppressant and is likely to leave you open to even slower wound healing due to some minor level of infection.

Remicade is renown for its ability to help actually heal the damage caused by crohn's, which before biological drugs was not really possible. You should see an improvement.

As for peroxide vs. alcohol I would choose alcohol. It is a more effective antiseptic which will help keep those wounds clean and free of more serious infection (which you're especially susceptible to being on immuno-suppressants) and peroxide, while bleaching your teeth white will damage your enamel and make them weaker leading to more cavity cash for your dentist. The downside to alcohol is that while it's better for your teeth and mouth in general, it will cause your gums to be more firm and if you have a receding gum line that will mean more recession. As for Glyocide, I don't know enough about it to say if it's better.

Another point, though, is that while this is all perfectly possible for crohn's I would wonder if your doctor has ruled out other auto-immune diseases like behcet's and lupus. What race/ethnicity are you by the way?

 

[PENWESTERN]

Hi there! I am going to go get the SCOPE out as soon as I am done answering you. Thanks for all the info. The thing I know about Crohns is one thing is relieved and another thing pops out leaving me sometimes quite miserable.

In ICU they could not tell me if my blisters were from the PRED drip or the Crohns but my Dr. said Crohns so I believe him. They thought maybe herpes but I never had that before. Who knows? Herpes doesn't leave blemishes and blemishes are left (red marks) yuk.

I am white - female - 54 - diagnosed at age 45. My weight stays average no matter what I do, healthy, flaring, dieting, prednisone. It stays the same. I am on 30 mg prednisone today and I am hungry. I try to just forget about eating because at my age I do not need extra weight. I am also requesting BONIVA from my Dr but he has not gotten back to me. I will ask again next week because I do have ostopenia already and hope he gets back to me soon.

 

[kello82]

hey there, and welcome to the forum

yes i have also had the crohn's affect my mouth. not nearly as severe as what you seem to be going through though. when its bad the roof of my mouth and gums feel like they have little cuts all over them. and the inside deep corners of my cheeks have cuts on them that never seem to go away now. certain foods hurt more than others-do you find the same? for example acidic stuff like pineapple or something. ive also had these sores extend down my throat it seems. just recently it got so bad that i couldnt eat, and taking some prednisone DEFINITLY helped a lot.
and yet another person who seems to have crohns in the nose! for about a year i have been experiencing what youre talking about-the bleeding and the absolutely nasty crusty buildup when you blow it out. ew. i didnt even think of it being related to crohns until i joined the forum and saw someone else mention it. i have not talked to my GI about it though, its kinda the least of my problems at the moment. but i do strongly suspect that it is related.
well, sorry i cant give much advice. but hopefully it helps to know that theres others with similar and seemingly odd symptoms.
look forward to seeing you around the forums

 

[PENWESTERN]

Kello82 - Thank you so much. I have been researching the sinus bloody crusty nose stuff and am finding nothing. My Dr. is far more concerned with my digestive track than my ulcers and mouth and nose. During this whole severe flare (11/21/08 - now) never a stomach cramp or pain below my neck. Dr. shakes his head because my scopes are severely ulcerated and inflamed.

Thank you for your thoughtful answer. The PA at the Dr's office belives the Remicade should help my mouth/nose troubles and it is scheduled for 1/12/09.

I am asking her if we can move it up to ASAP. I am on 30 mg prednisone and 50 mg Imuran and I wonder if they scheduled it so far out because my Pred will only be at 10 Mg. I have a voice mail in on that. I am also requesting BONIVA for my ostopena (I am 54) and have not heard back yet. Holidays make me inpatient when I am ill.

ps I went to answers at yahoo! and asked if I can fade the red marks left behind from crohns flare and someone suggested strongest Vitamin E skin cream I can find. She also said the ulcers run deep but should not be permanent. I sure hope the red marks go away. They are faded but I don't want a crohns reminder on three spots on my face. My elbow was blistered from a scrape and it ulcerated too. Wow! I had quite an attack. Dr. told sis I was within an hour or two of expiration. I waited too long to drive myself to ER that night. I know better now. Do not play with dehydration with this disease as it happens fast.

 

[Colt]

Have you had any inflammation problems with anything other than your digestive tract and skin? Any organs like the lungs, heart, pancreas, kidneys, livers, etc, etc? What about your eyes?

Honestly, if you were middle-eastern or central asian I'd make behcet's the primary candidate. Here's a test you can do yourself if you're up to it or ask the doctor to do it if you want: Prick your arm with a small needle. A lancet used for glucose testing is a good option. If a small red bump or pustule develops 24 hours or more after the prick on the site of the prick behcet's is something your doctor should seriously consider.

Also, have you had an ANA profile done to screen for lupus?

Again, it could all be good ol' fashion crohn's disease, and the treatments are the same regardless, but because of the unusual presentation you should have other auto-immune disorders ruled out to make sure they shouldn't be watching other organs as well.

 

[PENWESTERN]

I do not believe I have been tested for anything but Crohns.

I do have Blepharoconjunctivitis is the combination of conjunctivitis with blepharitis (inflammation of the eyelids). I was given eye drops containing prednisone last summer and it really did not help. It drove me crazy and Dr. said discontinue drops.

I use Johnsons baby shampoo on towels as well as Restasis for dry eyes.

I have been on the behcet's website since the oral ulcers.

This is my very first time with oral ulcers (I am white/54 years old) they have all cleared now. I can eat again.

I will keep Lupus and Behcets in mind and read up on those diseases as well as Crohns. I learn so much from these boards. THANK YOU SO MUCH!

 

[AIjen]

Hmmmm.......I, too, am having issues with my nose. I chalked it up to winter - the air is dryer now (Wisconsin = cold). It seems like mine is way up inside and it does build up and I need to use a q-tip to help get it out (it really bothers me after a while). When I blow my nose it's all bloody as well. Again, I just figured it was the dry air. But it also started around the time of my diagnosis as well, and I also wondered if it was the Pred.

I've had sores on and off in my mouth for years (but not severe like you had). Mostly on the roof of my mouth. After I was diagnosed with Undifferentiated Connective Tissue Disease, which is very similar to lupus, I figured it was from that.

I've not looked up Behcet's (is it supposed to be BeCHet's?) yet, but I have been tested for lupus (ANA) and I was negative, which led my rheumy to the UCTD diagnosis. I'm being treated with Plaquenil, which also treats Lupus, and it took the fluid away from around my heart and lungs for the first time in 8 years. I guess I don't care what they call it as long as it's being treated successfully!

 

[Colt]

Actually, it's correctly spelled Behçet's Disease but English keyboards do not have a ç so I usually substitute a c for a ç for the sake of easier communication. It's also sometimes called silk road disease because it has a high prevalence in people descended from those who lived along the silk road.

It's another auto-immune disorder. Basically it takes any existing inflammation and magnifies it. Behçet's can strike anywhere in the body that has a blood supply. Thus the common test where you poke the skin with a needle triggering a perfectly normal barely visible inflammatory reaction to the wound. Behçet's then magnifies that inflammation to the point that you can see it.

Mouth ulcers are very common with Behçet's. You brush your teeth, eat something hard, etc, etc, and that causes a wound you wouldn't otherwise notice but with Behçet's you get a runaway inflammatory reaction that can spread and can stop at any level of severity it feels like.

 

[heartofwisdom]

Penwestern,

We are the same age (53, F). I started Predizons a few weeks ago and also have a mouth full of ulcers, esp roof of mouth, and red cheeks.

I have mouth ulcers from Croznes but the Predizone seem to bring these on with thrush. The dr gave me meds to rinse with that helped with thrush but moth ulcers still there.

I have gained 8 lbs since on Predizone. I didn't need to gain. My size 10 pants are too tight now.

Glad to meet someone my age here.
Robin