Swollen lips and face in general

[Emily.marie]

Hi everybody
I am a 17 year old, I was diagnosed with Crohn's in 2012.
With time my face has been getting worse and worse. In four years I have been on around 7 different medications. Including Humira and Remicade. Last year after a very bad experience with a new medicine, I stopped going to the hospital. I have now been medicine free for a year, my disease hasn't gotten worse, but it hasn't gotten better either.
I am tired of everybody looking at me because I look like a freak.
I just want to know if anyone has the same symptoms as me
My lips have been constantly swollen for two years, I have constant sores in the corners of my mouth and my cheeks are around 1 inch thick.
Please write if you have any experiences with some of these things

 

[ronroush7]

I don't have experience but I hope you can get it resolved soon.

 

[my little penguin]

Oral facial crohns can happen
Please see your gi doctor
Disease can get worse inside without seeing signs on the outside
Have you had regular bloodwork and scans with your gi

 

[supernova]

Hi Emily.marie,

We all certainly understand the 'freak' feeling, although in reality you are a shining example of perseverance, I am sure.

My current go-to regimen is Humira every 7 days (strictly, no day or two lapse) and 1.2mg of colchicine in the morning, along with 1.2mg of colchicine at night.

When I have a cutaneous/skin/mucous membrane flares I increase colchicine temporarily according to MD, but in the last 6 years I have been unable to decrease or come off of colchicine. I have a love affair with colchicine, as it has never caused any side effects, even the more common ones.

My mouth used to peel in painless sheets of skin and I would wake up with my lips/mouth 'glued' shit. Slowly peeling them apart would cause lesions and rips which are never good with crohns.

My current autoimmune derm has suggested that with the next big flare, we will add dapsone awe to the Humira weekly (I had a wicked urogenital flare a few summers ago, that I hope to never repeat). But right now 'cutaneous crohns' dx is treated with weekly Humira and colchicine.

Humira alone (although A++++ for eyes, joints, spine, fatigue, intestines) did not help with the urogenital/skin manifestations. Prednisone 60mg was best but they will not keep me on that long term.

PM if you have any questions or wish to commiserate. I just logged in to find company and feel better about pulse round #3 of prednisone along with antibiotics despite my very best efforts to go without. Every single darn aspect of the body appears to be affected!

You are beautiful...you just have a very intimate relationship with the inner workings and delicacy of the human body...ah, inflammatory bowel.

Also, I had an anaphylactic reaction to Pentasa resulting in severely swollen lips...(like collagen injected x 10) despite being told that it is not common. Could you be reacting to medication? Or experiencing a side effect of medication. Prednisone makes my face puffy until I stop and deflate.

Best,

SNova