Is anyone in a similar situation?

I have been suffering terribly now for the past 11 years with chronic mouth ulcers to the point where my whole mouth is white and i cannot talk or eat. I have been given various treatments to help ease the pain and stop me from getting ulcers but nothing seems to work. It got to the point 2 years ago that my oral GP at the hospital referred me to the gastro department as nothing seemed to be working. The only medication that will get rid of my ulcers is prednisolone, however, in a few weeks, they are back again. My gastro doctor seemed to think that it could possibly be Crohns, as even though I do not suffer with diarrhea (in fact I am regularly constipated) I have started over the last year or so to get what seems to be lumpy painful sores underneath the skin in my hands, something which else I am told is a symptom.

I have had a colonoscopy and an endoscopy which has shown nothing that indicates Crohns, yet I am still suffering. I have been given an information sheet from my GP on Azathioprine which hopefully I will be starting soon.

At the moment I am currently chugging down Moviprep (mixed with lots of lime cordial and a lollipop) in preperation for my Capsule Endoscopy tomorrow which will give my doctor chance to check my small bowel.

Please If anyone is in or has been in a similar situation please could you give me some advice, feel as though if after tomorrow there is still nothing to indicate Crohns im just going to be referred to another department and will be no further forward. Thankyou

Hi. I have read on places on this forum where people with Crohn's have ulcers. I hope you get some definite answers from the test tomorrow.

When I flare I do get mouth ulcers. Like cankersores but much more plentiful.
There are other autoimmune disease that can show up in the mouth ad well. Any chance that they did or would consider an oral biopsy? Not so fun but It can show underlying problems.

When i was getting obstructions and regular flare ups, my body was so run down that i also got mouth ulcers, boils (on my legs and bum) and my hair molted alot more and was greasy alot. They only stopped when i stopped getting obstructions. Yet i am on azathioprine, so my immune system is low but that doesnt seem to cause it. Its definitely active disease that does for me. I wish you the best.

I also have had periodic mouth ulcerations, not to the extent that it required medical intervention though. It was very bothersome even with only a few, I can only imagine what you must be going through. I hope you find out how to treat them soon, keep in touch.

Caitlyn336 said:

When I flare I do get mouth ulcers. Like cankersores but much more plentiful.
There are other autoimmune disease that can show up in the mouth ad well. Any chance that they did or would consider an oral biopsy? Not so fun but It can show underlying problems.

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Yes I have had an oral biopsy possibly a year and a half ago now and shown nothing whatsoever

cmack said:

I also have had periodic mouth ulcerations, not to the extent that it required medical intervention though. It was very bothersome even with only a few, I can only imagine what you must be going through. I hope you find out how to treat them soon, keep in touch.

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My doctor now seems to think that it could be crohns and only limited to the mouth. Awaiting my small bowel results so will go from there! Thankyou for your reply

Pug Gamer said:

When i was getting obstructions and regular flare ups, my body was so run down that i also got mouth ulcers, boils (on my legs and bum) and my hair molted alot more and was greasy alot. They only stopped when i stopped getting obstructions. Yet i am on azathioprine, so my immune system is low but that doesnt seem to cause it. Its definitely active disease that does for me. I wish you the best.

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I am hoping that once I have started azathioprine I have the same results. Have had the blood tests before hand to make sure I am
Okay to take them. Thankyou for your reply

Good luck Ellie. Stay strong and determined.

Right before I was hospitalized last year I had an enormous ulcer in my mouth. Crohn's can show up anywhere in the GI tract, so why not only in the mouth. I suspect your doctor will want to keep a close eye on the rest of you even if your symptoms are in your mouth right now. Hope you get some relief soon.