Mouth pain....AGAIN!

[Paccha]

I truly hate to bug everyone with the same old stuff I always complain about, but I really feel like I am at my wits end and my doctors can't even help me anymore.
Currently, I have about 30-40 ulcers in my mouth. They were worse last week, but I got my remicade Infusion and it seems to be better, but just a little. The pain is unbelievable. Eating is excruciating, impossible actually. Talking is so painful and I know I look and sound funny when I attempt to interact with people. Sometimes it's so bad I just start crying.
My doctors have sent me to the mayo clinic in Jacksonville. They can't help me. (I left out an embarrassing symptom, I also have these ulcers vaginally). It hurts to urinate, bathe, wear jeans, walk, etc...
My doctors say they don't know what else to do for me. I'm taking tramadol for pain, but it's not working very well. Please help. Does anyone have any suggestions?

 

[nogutsnoglory]

Oh man that's awful, I'm so sorry. Would a certain mouthwash help with numbing the pain and maybe eliminating the ulcer? I do warm salt water rinses when I have ulcers and it helps. Try being on a liquid or soft foods diet. Hopefully the Remicade heals it up but I'm thinking maybe another specialist has advice. Wish I knew more to tell you.

 

[DJW]

That is awful. I had severe mouth ulcers shortly after my diagnosis. Nothing I did seemed to work. I believe I went on prednisone and it cleared up. (but that was years ago so the timeline might be off). Are you under the care of a GI specialist. I hope you can get this sorted out quickly. Sending you my support and best wishes.

 

[Honey]

Hi there,
Yes it is very painful and makes eating difficult when you have mouth ulcers.
I have a spray I was prescribed by my doctor which works.
It is called DIFFLAM SPRAY 30 ml [ BENZYDAMINE HYDROCHLORIDE ]. You can use it over several days until condition clears up. You just spray it on to the sores in your mouth, it is pleasant tasting.
As for your other problem I was tolds it was Candice, a fungul infection, and was prescribed a cream which cleared and soothe the skin.
Good luck. Let me know how you are. Best wishes.
:rosette1:anda-wave-t::rosette1:

 

[Paccha]

Thank you all so much for your suggestions. I actually do have a mouthwash. But it has never cleared the ulcers, only gives me about a half hour of relief, which trust me I am thankful for. I am going to try out that spray though. I haven't heard of that before. Prednisone does help, but only while I'm on it. They come back almost immediately after I taper down to about 15mg. I have a specialist now, but they have told me that they don't have any more suggestions. The mayo clinic couldn't even help me. I have lasting side effects from all of the prednisone I've been on, but I think I may not have any more choices. Back on the steroids I go I Thank all of you so much for your time.

 

[Honey]

Hi there,
glad to help. It does work as I have severe Crohn's and am presently on Prednisolone deciding what my next Option is ! I was doing well on Remicade infusions until I ended up in hospital before Christmas with a lung infection. Let me know how you Do. It takes a few sprays over several days to calm down the sore mouth. Best wishes.