Sore, swollen ulcerating gums

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Leebie3

Leebie3

Joined
Apr 6, 2012
Messages
249
Hi guys

I'm undiagnosed but having testing as GI & GP suspect crohns..

my mouth ulcers healed up about 3 days ago but the last 2 days my gums are SO sore!
my gums are starting to get bleeding under them (at the front of my gum way above the toothline as well as the toothline so I don't think it's from not brushing properly etc..) and the surface is breaking down almost as though my gums are ulcerating.. is that possible!? or is it not and I should suck it up and go to the dentist.. TIA :)
 
That's what I thought it might be :( Pyostomatitis Vegetans. Unfortunately, that, along with all your other symptoms makes Crohn's Disease or Ulcerative Colitis a likely diagnosis :( Be sure to tell your GI about the Pyostomatitis Vegetans.

I assume they've tested your blood. Were you anemic or borderline anemic last time you were tested?

I'm sorry :(

*hugs*
 
thanks David :-( I am slightly anaemic.. not enough to have anything other than iron supplements which I can't take coz they bung me up no end.. need to try the liquid stuff.. Will , as you suggest, ask for vitamin levels too next time I go in. I have CTE scheduled for thursday so I am HOPING, weird as that is, that it shows something so I don't have to pay for the colonoscopy and gastroscopy which is what they want after that.
 
Whenever I have a flare - my mouth and throat always join the party.
Once you're diagnosed and treated, the oral inflammations should dissipate.
Agony waiting for it all to happen though.
I hope you feel better soon.
 
One time the doctor counted over 20 canker sores in my mouth so I know what you're going through. I couldn't eat anything! Soup was too hot, anything soild was too sharp, ice cream/juice was too cold, etc. Eventually (and I can't remember if it was prescription or not) but I got a mouthwash style stuff that you gurgle and than spit out and it freezes your mouth so there's no pain and you can eat. I was using it 24 hours a day before. You should try to look into something like that. It made such a difference and was such a relief for me.
 
thanks kwalker! i will def look for it! I'm the same.. thought icecream would be nice on it but no.. hurt too much from the cold ;-( I am so scared now :-( I think I really, deep down, thought it was just a severe IBS and all these tests, although crohns was talked about, were to rule it out ..

Should I go to the dentist tomorrow do you reckon David and get them to confirm it? Is there anything they can do? antibiotics or anything?

forgot to say that my anaemia has only ever responded to iron injections in the past.. need to be tested again though I think because when it was tested a few months ago I wasn't bleeding like I am now.

and thanks samboi, It does help to know it can get better :)
 
Cepacaine mouthwash can deaden the pain enough to quickly eat soft food.
Kenalog mouth paste overnight works miracles.

Generally oral manifestations of active flare can only be properly treated by proper treatment of the underlying cause - the flare. Your dentist probably can't do much for you as the cause is usually treated by a GI.
 
Samboi said:
Cepacaine mouthwash can deaden the pain enough to quickly eat soft food.
Kenalog mouth paste overnight works miracles.

Generally oral manifestations of active flare can only be properly treated by proper treatment of the underlying cause - the flare. Your dentist probably can't do much for you as the cause is usually treated by a GI.
Click to expand...

I use Triamcinolone acetonide 0.1% ointment for mouth lesions. It sounds like the same active ingredient as the Kenalog Samboi was talking about. Mine is generic. It is a steroid about 8x stronger than prednisone but since it is topical you dont have all of those prednisone systemic effects.

It comes in a cream and an ointment. Definately get the ointment (it is also called "dental paste") otherwise it will not stick to your mouth. The ointment sticks to wet surfaces.

If you have a lesion from overactive immune system this will work wonders as Samboi said. If you have a lesion that got infected this will make it worse. They do sell preps that have the steroid + antibiotic together though.

You just gently dab some of the ointment on the painful area in your mouth. Even thought it says "dental paste" you DONT brush with it. The consistancy is sort of like vaseline + dirt. It sounds awful but it isnt. Its just a strange texture but it works so well it doesnt matter. If you apply it before bed it really makes a difference by the time you wake up in the morning.

Your toothpaste brand might be making things worse too. I just know if I brush with certain brands I will get an entire layer of skin slough off inside my mouth within 15 minutes afterwards (sorry if TMI). If my mouth is really bad I just mix some baking soda and water and brush with that. It can make mouth lesions burn though so if you try this I would use very very very little baking soda in the water at first. :)

Also, your toothbrush can easily be reinfecting the area. If you use Hydrogen peroxide to disinfect your toothbrush after you use it you might see some healing of your mouth sores.

Hope it helps. Sorry you hurt. :(
 
I had bleeding gums for years even despite going to dentist regularly and having good teeth etc tried everything and I'm not joking the day I had my resection 1 1/2 yrs ago I haven't had bleeding gums since, that has been one of the most significant improvements I've noticed. If I ever get bleeding gums back I'll know it's my crohns playing up. Goodluck
 
dentist said it looks like it David but he wasn't prepared to biopsy which he said is the only 100% sure way and given he has never actually seen it before... I'm no wiser lol.. my GP couldn't fit me in so I had to see someone else who is a knob. a total KNOB. He's treating me systemically for HERPES for crying out loud He said it's the easiest treatment option.. if it doesn't work or you get worse come back.. PMSL unbelievable.
 
I do NOT understand what the issue is with simply trialling me on steroids. They keep saying no, not until a confirmed diagnosis because it's a powerful drug which I DO understand and agree with.. BUT they're happy to give it to babies on day ONE of a croup attack!?
 
ps: while I was there I got him to check my B!@ and folate and ferritin levels. ferritin and folate were low but still in range, B12 was 327 (?)
 
Hey leebie

I'm so sorry to hear your pains, the mouth to me is the worth thing. Please don't threat I had all of that for months, and drs saying its just a virus and I'm run down. As soon as I had a blood test I was b12 and folate deficient. I had the booster b12 jabs and even still after that I got ulcers and agonising gums. I would advise if your folate is low get the frolic acid tablets they are really great, since I have been taking both I have been getting less sores etc. unless I am really run down or due my b12 jab.

I have finally been given a 5 day steroid treatment and it does help so if you can, try push for that.

I too am undiagnosed crohns suspect. oh and try tea tree tooth paste and mouth washes. Anything less harsh for your mouth, and mouth ulcer pastilles do help too.

Good luck
 
Leebie you don't want to try steriods two days before your ct scan. What if they worked and stopped you getting a dx. Sarah's gi would not started her on steriods until after mri even when already knew it was crohn because we not know far advanced the disease was

That was worse 10 day of her illness for me as a mother.
 
Have you had iron studies done, not just ferritin along with hemoglobin. How are the numbers trending?
 
ummm dunno :-s I just asked about my iron levels (because the dentist (lovely lovely old guy that said he was sorry and felt bad how sore my mouth looked) actually looked in my eyes and said I was anaemic.. I wouldn't have thought that would be a dentist thing to do but mentioned it to the doc.. he said no I'm not lol) anyway.. he checked and said my folate and ferritin were fine.. low but fine. ??
 
Can you get printout post them if you feel ok doing so? Have learnt a few things about these after following sarah for almost 3 years.
 
IRON STUDIES

clinical notes: elevated random cholesterol, iron deficiency.

7/9/10 9/1/12 9/3/12 range

Iron 8 17 14 (5-30)
Haemolysis index 2 2 (0-40)
TIBC 59 88H 75H (45-72)
Trans sat 14L 19L 19L (20-55)
Ferritin 15L 34 33 (30-150)
Vitamin B12 327 361 (>150)
RBC Folate 1765 2208 (>900)

Haemoglobin 123 135 (115-165)
Haematocrit 0.39 0.41 (0.35-0.47)
RCC 4.5 4.8 (3.9-5.6)
MCV 86 86 (80-100)

Platelets 358 412H (150-400)
ESR 13H (1-12)

comments on collection 9/3/12
Iron studies
The normal ferritin implies normal iron stores. HOWEVER in frankly iron deficient patients who have recently taken oral iron, or who may have an intercurrent illness, a normal ferritin may be seen.



do you want the serum chemistry as well? lol
 
where did all my carefully put spaces go?? *slaps forehead*

I was put on iron for 6 months after the first test (7 sept 2010).. then I put myself on multivitamins.. Stopped taking them in Feb this year when my tummy first started getting upset again..
 
I understand what you are saying about the vitamins. Certain types can really make you ill without you even knowing it.

Sometimes certain vitamins can actually set off a flare due to "unwanted" ingredients. I cannot tell you how many ingredient lists I have looked at in horror- and these are things we are taking to make us healthier.

The two major unwanted ingredients I find are Yeast and Soy. A lot of people with Crohn's cannot tolerate yeast and it can send them into a flare. The big multivitamin or Vitamin B "horse pills" are notorious for this.

Soy is one of the most often found ingredients in the "gel" capsule type pills and is a major sensitizing antigen. Crazy! In fact, I almost (accidentally) bought Soy-laden Vitamin B12 two days ago. I had a difficult time finding the non-Soy version. :)
 
the last blood test does not show anemia as the hemoglobin is in normal range. Plus they would normally right anemia under comments.

The test did tell you that you have iron deficiency.

The comments also talking about oral supplements or concurrent illness having the possibility of making ferritin level seem normal when it not because you have iron deficiency.

I think this show that you need to supplement with iron.
 

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