Crohn's in Mouth

I posted a while back about sores in my mouth that were causing my jaw and cheeks to puff up and that came and went. I had my GI look at it and he couldn't really see anything so I just sort of dealt with it for a few more months until it was finally driving me crazy enough to call my dentist (even drinking water was hurting and I have lost 10 hard earned pounds from not wanting to eat or drink anything). At first, even my dentist didn't see anything until I pulled my cheek away and showed him. I guess there are a ton of sores way down past my gum line. He had no idea what it was so he referred me to an oral surgeon. The oral surgeon also had no idea, but did do a biopsy (oww) and it came back as Crohn's ulcers. The oral surgeon didn't feel qualified to treat it so he called my GI and now my GI is on a referral frenzy. He wants me to see an oral pathologist, dermatologist, and infectious disease doctor. I don't know about you guys, but I get SOOOO annoyed with referrals, especially now that we know it's just more Crohn's. It all seems pretty redundant to me. I don't want to seem noncompliant, but I have a full time job and a family. I don't have time for all these doctors, especially when I suspect they will be unhelpful in the long run.

One thing I am doing is going back to Remicade. My surgeon suggested that the Cimzia could be causing some crazy side effects . . . . maybe? In any case, the Cimzia obviously isn't doing much if I have active Crohn's in my mouth. When my GI asks how I'm feeling I really don't know how to answer. I am definitely getting by - I can eat solid food (most of the time) without throwing up 10 minutes later and I am not in significant pain. But I tire easily and seem to be losing weight again. It is all so frustrating. If anyone has any suggestions as to what I could be doing differently, I would appreciate it.

Seems simple, but I think you should tell your GI what you told us. Medicine is gradually shifting to more patient-centered care where you have more of a say in what you want your healthcare experience to be like. You have to work your appointments around your clearly busy life, so tell your GI that you want to minimize the amount of appointments and referrals you need. Ask him exactly what he'll think those other specialists will offer, ask him why he's referring you to each specialist. That may help you understand the importance of the appointments and feel more like there is a purpose rather than you're forced to be dragged around to all these doctors because he said so. Ask him why there is a need for all these referrals when you know that it is just Crohn's. He may be suspecting something else is going on. Or worst case scenario he's not sure what to do. Either way, I would press your doctor for more info.

If you find that your doctor isn't giving you satisfactory answers, he doesn't seem to have good reasons for things, or he gets irritated when you (rightfully) ask him for more information, I'd look for a new doctor. Of course, this is only if it becomes a somewhat consistent thing.

I understand just what you are going through with the mouth sores. The only time I didn't get them was when I was on Remicade years ago. Right now I have a mouthful again and I know it's from what I've eaten in the past few days.

That said, the best treatment I've found for this issue for myself is to avoid foods that trigger it. Chocolate is the number one no no for me , but being the holidays and all.....I've strayed into the forbidden foods land! Hope you get some relief from the Remicade. I definitely have to talk to my GI about the Humira not working like I think it should.

oh and you aren't being lazy today ---- you are recharging!