Persistent Mouth ulcers!!

[amyy_xo]

I've had mouth ulcers for almost a year now. Started with just a few at the back of my mouth and then I started getting stomach pain and all the usual crohns symptoms blah blah, I was diagnosed with crohns in about February I think (it's been such a long process I can't even remember!!) and then my mouth ulcers got worse, they developed like a cobblestoned effect all over the sides of my mouth in my cheeks and down the bottom of my gums, this caused my face to swell and has been swollen since christmas last year. Not only is this extremely painful since I can't eat without having to swish water around my mouth to stop the stinging, it is also the most degrading thing I have ever experienced!! As a 17 year old girl who obsesses over fashion etc it's just awful having such a swollen face and feeling so ugly and fat, I've become so reserved and shy because of it, just hiding away because I don't want to face anyone because of how ugly I feel! It's horrible and having it for almost a year now it seems it will never end. I've tried salt water which helps with the pain but never heals them and never helps the swelling, I've had steroid mouthwash which just does the same as the salt water. Nothing seems to have worked. I'm currently on Prednisolone tablets which are being reduced and I'm also on 100mg of Azathioprine which is slowly being increased eventually to 150mg. These tablets have worked amazingly well for my stomach pain etc but just hasn't seemed to have worked for my mouth. It's incredibly frustrating! Now my mouth seems to have flared up again and is hurting a lot more, at the bottom of my gums like down in the sides of my mouth it looks like someone has taken a knife and repeatedly slit the gum! It's gross and parts of it are like holes with white/yellow stuff in it..there was also a giant lump of really dark gum/blood which was hanging out of it and I'm not sure what that was..but the other day my mouth poured with blood when I brushed my teeth! I'd never seen Anything like it! I would be grateful if anyone could share their experience or give me advice with what seems like a never ending battle! Any advice would be extremely useful especially concerning the swelling! Thank you! Xx

 

[Lady Organic]

Hi Amy,

here is a video from the UK on youtube you have to watch :

http://www.youtube.com/watch?v=FaOQ47Nwceo

If you cant open it , here is the website of channel 4 where the show aired:

http://www.channel4.com/info/press/programme-information/the-food-hospital

its ''The Food hospital'' episode 3 Crohns disease on Channel 4.

google all of that to see if you can find that clip somewhere

Presented is a 20 year old women with same symptoms as you, Crohn's with mouth, lip ulcers. She is being treated with Elemental liquid diet E028 and the LOFFLEX diet, she no longer uses prednisone. A team of doctors leads this show. this could be an option to try.

wishing you relief soon

 

[Sue-2009]

Vitamin B 12, vitamin d(of course) and Lysine. Try Lysine it's helped me!

 

[amyy_xo]

Thank you both of you, you've been very helpful! I watched the food hospital and it's definitely something I'm going to ask my specialist about! I'm also going to get some supplements which will hopefully help too.

 

[lilac]

I've had them for a year like you - seriously feel your pain (excuse pun). My lips swell and everyone at work thinks I have some sort of botox addiction :shifty:

I use corsydyl (water it down), a seteroid inhaler on them and difflam. They won't budge but it does take some of the swelling down. Must be awful for you!

 

[amyy_xo]

Horrible isn't it! Although I've got used to it now with eating habits etc it's just this horrible swelling that's causing me the issue I've tried corsydyl before and it's stung quite a bit but I will try it watered down and see if I can tolerate it! Is the steroid inhaler from your doctor? I am going for blood tests on Monday so am going to ask about all of these different things! I have diff lam though I'll give that a try! Thank you though! And also I was prescribed a steroid mouthwash which helps with the pain so maybe you could give that a try?

 

[lilac]

it was a maxillo-facial surgeon that prescribed the inhaler. My GI keeps giving me extra steroids to crush up and swish around my mouth with water. Keep getting told that it's the flare that needs to be under control for them to truely stop which is depressing

 

[Lady Organic]

Great Amy, let us know how your appointment goes! Good luck with liquid E028 if you have the chance to try it. crossing fingers for you.

 

[amyy_xo]

I've recently seen a maxillo facial surgeon about the ulcers and swelling and she was extremely unhelpful! She was very rude and didn't seem to know much about Crohn's disease at all since she told me I wouldn't be able to solve the ulcers. I know this isn't true because my specialist has told me otherwise. My steroid dose has been lowered and so has my azathioprine since I am starting on humira tomorrow. They're hoping this will solve the ulcers and stomach pain and I pray to God it does too!! My stomach pain and general Crohn's symptoms have cleared up a lot now, i hardly ever get stomach aches so I'm not sure why i still have all of the ulcers! it's very frustrating since not a lot of other people have the same ulcers as me so there's not much advice, but from the research i have gathered apparently mouth ulcers like mine are due to the inflammation in the colon which is causing me to not absorb the nutrients properly, causing malnutrition! This is the only thing that makes sense to me really so I am going to try a high quality vitamin B complex and see if that helps.
I also spoke to my specialist about special diets but she says as far as she is concerned there is no need for me to try any liquid diets etc because she doesn't feel it will help. I hope one day they find a cure for this horrible illness!!

 

[Dogluv]

Hi Amy,
My case is similar to yours, my first crohns symptom was mouth ulcers, when I was around 13 years old, I saw multiple doctors, no one seemed to have any answers, until I was diagnosed with crohns. My GI told me crohns can occur anywhere in the digestive tract including the mouth. At times I've had up to 15 or 20 mouth ulcers at the same time, I know how extremely painful and irritating they are! I tried numerous things to get rid of them from gargleing with salt water to topical steroid creams, and have found the only thing that actually gets rid of them is getting my crohns in remission. When I was on remicade in the past they disappeared completely. I would talk to your GI, and maybe get some labs done to check your inflammation levels. I would assume because your mouth ulcers are still present, that you likely have active crohns inflammation that needs to be addressed. Anti-tnf drugs seem to be effective for crohns in uncommon areas, such as the mouth, I would also suggest looking into LDN, which is a more alternative therapy. I know how frustrating mouth ulcerations are, and wish you the best of luck!

 

[amyy_xo]

Hello! It's so good to hear that because I honestly thought I was the only one! Gargling with salt water seems to take the pain away but never clears them! My specialist has told me that once my Crohn's is in remission the ulcers will clear up, I wasn't sure if this was true or not since I'd never spoken to anyone who could confirm it had worked for them but atleast now I can rest assured that it has worked for you! I'm going to see how the Humira goes and if I see no improvement in 6 weeks I will talk to my specialist again and see what she suggests, but I will definitely mention LDN. I'm hoping the humira will do the trick though! Thankyou very much for your help though!!

 

[tonimacaroni]

Mouth ulcers were also my first symptom. I started getting really huge, long lasting canker sores in early puberty. I often got them in my throat.

My doctor at the time gave me something that our local pharmacy made called Triple mix. It was mylanta, benedryl and litacane. They were a liquid mix I'd shake it up and swish with it 2-3 times a day. It did not really get rid of the sores, as they were caused by my Crohn's... BUT they did provide enormous relief. Mine often opened up and became like, craters in my mouth. The triple mix helped them close up and I was able to eat more acidic things etc.

I now mix my own up of just the mylanta and benedryl when it gets really bad, and it helps a lot.

Just a thought. Good luck!