9 mouth sores! :-(

[Paccha]

Help! I am definitely not new to crohns unfortunately, but i am new to these mouth sores. I am not flaring right now, not yet at least, but i have 9 pea sized whites sores in my mouth and I am tempted to say that they are almost as debilitating as the stomach pain I feel during a full blown flare. Sounds crazy I know, but it hurts (and I use this word loosely) to talk, eat, drink, brush my teeth and it's not getting any better, has anyone had this happen to them? I've tried magic mouthwash, oragel, salt water and pain relievers. I feel like a wuss complaining about this but I am on the verge of tears from it constantly. Please help!

 

[Starlight]

You are defiantly not alone! They are ulcers? That is what it sounds like. Before I started remicade, I used to live with them. Would have up to 20 or more or so at once and some points. If I had 10 or under it was considered relief. I just learned to live with them the best i could. They defiantly do make it hard to talk, eat, brush your teeth etc. You are defiantly not a wimp. Those suckers HURT! I'm like you, I didn't find the mouth wash etc really helped. It seems like its just something that has to go its course, but unfortunately , with crohns, sometimes by the time one runs its course, 2 more will pop up and its like a never ending chain. Are you in a flare? Remicade worked wonders for me. Every once in a while ill still get a couple pop up, but no where near like I used to.

I do use extra strength oragel when I have a big one or one that's in a bad spot. It burns like hell when you first put it on, it burns for a few seconds, but it does numb it. Unfortunately not for long. Some nights when I have a big one or one in a bad spot, when i lay my head on the pillow, my teeth push against the ulcer and that hurts. So ill stick some oragel on it right before going lay down and usually that will last long enough for me to get comfortable and go to sleep.

I hope they go away from you soon, but you need to talk to your doctor about these, because crohns can cause these, and even though you may not be having any other symptoms, you may need to try a different medicine.

 

[Paccha]

Starlight, thank you so much for your response. You are so sweet and helpful. I have actually been on Remicade for almost a year, I have found it works better than any other meds I've been on, but I've been hospitalized for a 9 day stint since starting the treatment. Its working much better now for my bowel problems but the disease seems to be affecting other areas instead, such as my joints, skin and mouth. This was actually my first post on the forum, so I'm still feeling a little shy to talk about everything, but the problems I'm having are very real, very painful, and sometimes I feel like nothing on my body works right. I'm not losing hope, but damn it frustrating! But also, very nice to have this outlet. And by the way, the oragel treatments help a lot, even if for a short time, but I can't reach the ulsers in my throat. Those are getting worse. Again, thank you so much for your helpful response. Stay well!

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[Samboi]

Hi Paacha
I have felt your pain! You poor thing. It really impacts on quality of life.
I used SM33, bonjela, clorahexidine mouthwash, cepacaine and a tooth remedy with cloves in it.
In Peru I found a mouth spray that had a cocaine derivative that gave great relief. Not legal here though

Get your white blood cell levels checked - especially your neutrophil count. If that is low - it will cause mouth ulcers.

I also used a baby food musher to make sure I got nutrients from food as I could not anything other than super soft mush.

I also took OxyContin when the pain was super bad. You really need some relief some times.

I hope you get some relief and feel better soon.

 

[ron50]

Hi Paccha
Instead of just salt mix a teaspoon of salt and a teaspoon of sodium bi-carbonate in a glass of warm water. Use it often as a mouthwash. It helped me and a lot of the cancer sufferers when we were having ulerrated mouths from chemo. Good luck,Ron.

 

[Paccha]

Thank you all for the advice. The rinse helps my mouth, but now it seems that my throat is hurting worse than my mouth does. I can't tell if there are a bunch sores in there or there's something else going on. I have a call into my doctor. I'm hoping she will give me something for pain as well, although I hate asking for pain meds. I have to go back to work tomorrow and I can't imagine working and talking to people in this much pain. Thanks to all of you for listening and for your suggestions.

2

 

[Samboi]

The ulcers may also go down your throat.
I've had them there before.
I've ended up with swollen glands, ear aches, sore throats - all from the ulcers.
I'm so sorry you're in so much pain.

 

[Paccha]

YES! my ears are hurting today, like waaay down in there . I can tell it's all connected and related. I was beginning to think I was crazy. Thank you.

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[rob101]

Have you tried gargling with warm salty water ? Its best to use sea salt. It worked wonders on mine and helped clear them up ,it also has a numbing effect which is handy before you eat.

 

[Lady Organic]

Hi Paccha,

Those ulcers could indeed be crohn's related, but there are also other viruses like herpes types 1 or 2 that can cause white ulcers (white bumps) in the throat and mouth and which are very often underestimated by the doctors. The doctor can simply take a sample and have it analyzed.
I wish you all the best and that those ulcers dissapear fast,
courage!

 

[heisenberg]

I am really sorry you are having so much trouble with these sores. I have also had quite a few problems with ulcers since about 6 months ago. Mine are almost all on my tongue with the occasional one on my lip. I am also on remicade at the moment. It has definitely helped heal the ulcers quite a bit but they are still causing me trouble, and seem to be getting worse at the moment (coincidently my bowels seem to be getting worse recently as well, which I think is connected). I currently have a massive ulcer on my bottom lip for about the past 2 months, it is causing a little bit of swelling to the lip as well and making it a bit difficult to talk which I am quite self conscious about lol.

These ulcers could either be something else (e.g lack of certain vitamins etc)that has manifested itself because of crohns, or it could actually be crohns itself in the mouth. My doctor seems to think mine is the later unfortunately, I hope it is not the same for you. I assume you are already having regular blood tests, but if not it may be worth getting checked to see if you are deficient in any vitamins, which may be contributing to this.

Unfortunately there aren't many treatments available for mouth ulcers, the only treatments that are proven to actually heal them are benzydamine hydrochloride or buccal adhesive hydrocortisone tablets (neither worked for me). Other than that the rest of the things out there can only really numb the pain. Other than that I can only suggest that you basically use a whole variety of things at once in the hope that in combination they somehow help clear them up. In addition to the things already mentioned in this thread, people have claimed that vitamin b50 (which includes a number of different b vitamins), vitamin c/d, zinc, probiotics, l-lysine and hydrogen peroxide. Worth a shot I think as it can't do any harm anyway.

Btw I also discovered (and this is definitely scientifically proven) that toothpastes containing sodium lauryl sulfate in them can contribute to mouth ulcers. SLS is basically a detergent, and it causes irritation to the lining of the gums which can lead to ulcers. Not sure if it will help with ulcers from crohns but another thing worth a go. I don't know what toothpaste you have over there, but I know sensodyne is SLS free over here.

I hope you can find some relief soon. please keep us updated how you get on.

 

[Paccha]

Thanks so much for all of your input. I actually just got home from a 6 day stint in the hospital. I was getting high fevers and no relief. And the pain is like nothing I've ever felt before. For the first few days they had me on three IV antibiotics and were searching for infection. I also had swelling and some vaginal sores that made it unbearable to pee. They tested me for STDs, including herpes and all came out negative. I've never actually flared with no bowel symptom whatsoever. The antibiotics did nothing for me, so I got progressively worse. I couldn't stay awake, couldn't eat and nothing helped the pain. Every night my fever would spike to 102 degrees. When they finally ruled out infection (although I did have viral tonsillitis, that's why swallowing was so damn difficult I suppose), they started steroids and I started making drastic improvements. My sores aren't anywhere near gone, but they are better. So final diagnosis was a Crohns flare, although the docs are still scratching their heads.

Also, some of you mentioned Remicade. I've been on that since June, its done wonders for my gut, but I feel like its just pushing the disease to other parts of my body. Maybe that was just a fluke. All I know is that this damn disease is no joke. My heart goes out to everyone that has to deal with it. Thank you all again.

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[Josephine]

Hopeful you on the mend.

 

[Lady Organic]

Hi Paccha,

i am currently reading a book on diet and IBD by Professor John Hunter (UK) and he mentions a form of colitis arising from diseases elsewhere in the body. He says some diseases which primarily affect other organs may also involve the large intestine.

1. Behcets: this cause ulcers in the mouth and on the genitals, together with inflammation in the eyes, skin and nervous system. it may cause ulceration in the ileum and caecum, which is very like that seen in crohns disease.

you might want to discuss that with your doctor, it could be a possibility...
i hope you are feeling better already

 

[Darius]

My husband Darius has mouth and throat ulcers and ulcers around his stoma. GI said that is crohns in severe, put him on 25mg methotrexate a week and 40mg cortizone a day. So far doing little to help.