Crohn’s Disease in mouth & throat

Posted by guyb @guyb, Aug 23 2:22pm

Please any help ???
Our 47 yo daughter has been a severe Crohns patient for 27+ years. She’s had a ostomy for 12-15 years …
We’ve been to Shands in Gainesville ( her GI doctor) currently she is all ulcerated in mouth & throat with active Crohns ….. nobody wants to help her , dentist are afraid…. any help ????

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@guyb I wish I had a very simple strong answer for you. The best I can do is this: I have a bucket of AI diseases as part of my make-up. It includes Crohn, Gelsolin, CALR, MSN, etc. It is all part of who I am, and if you don't like it, tough ….. The song every person with genetic issues needs to memorize, and sing to the world every day, is an oldie from Johnny Cash, I believe. He walks into a bar, gets a beer, and turns around to face the room full of time-killers at the tables. Then, he yells those famous words: "Hello, there! My name is SUE! How do you do?" Then he tells about the fights that break up the monotony of the mud and the blood and the beer. Well, my name is not "Sue", but I do have Limb Girdle Muscular Dystrophy r23, and Gelsolin, and I am in pain all the time. So if you don't like it, you better protect your mud and your blood and your beer. I am what I am, and I will fight to the death to protect my own mud and blood and beer. And Crohn and cancers. I will even fight to help you protect yours. oldkarl.

REPLY

your words are kind …. thank you and special prayers to you your strength is awesome… prayers to others that look for answers or help ….

REPLY

@guyb, I'd like to add my welcome. Having ulcers in the mouth and throat must be extremely painful and distressing for both you and your daughter. Crohn’s of the mouth, esophagus and appendix are the rarest forms of the disease.

I'm hoping that fellow members @astaingegerdm @bikerjack @lstubert or @sandyjr, who have experience with Crohn's may have some thoughts for you.

Guy, have you considered seeking a second opinion at Mayo Clinic? Here's more information in case this may be of interest: http://mayocl.in/1mtmR63

Is your daughter able to swallow? To eat?

REPLY

@guyb – I’m so sorry to hear how much your daughter is suffering! Is she on additional medication now? What does she usually take?
Having such serious problem with mouth ulceration is not that common- does she have any topical medication now?
Has she lost weight? Did she ever get tube feeding?
I agree with Colleen- she needs a second opinion- preferably at Mayo.
With such severe disease she needs the best care now.

REPLY

So sorry to hear of your daughter’s latest challenge living with Crohns.

I was diagnosed in my mid-40s and throughout my journey have experienced a wide range of the manifestations of this AI disease including mouth ulcers. At time having up to 20 canker sores/ulcers. When I had the ulcers I was given a solution referred to as Mary’s (a mouth rinse to calm the tissues) and I had a dentist who treated my mouth ulcers with a cold laser. While neither of these “cured” the ulcers, the combination did relieve the situation and allowed a respite until the flare passed.

As anyone with an AI disease knows, each day can bring you a new challenge and new normal. It’s one of the realities & frustrations of not being in control of how your system reacts on any given day.

I hope your daughter can find something to aid in her current issues.

REPLY
Please sign in or register to post a reply.
  Request Appointment