Lip Swelling due to Crohns

[Catt]

I have had Crohns disease for 9 years and I have just had a biopsy on my lower lip as it was very swollen. The results have came back positive to Crohn's disease. Specialist has advised that Infliximab is the only cure which I'm not entitled to. Have tried steroids with no luck. Do you know if there are any other treatments or have seen Crohns in the lips.

 

[Grumbletum]

Hello Catt and a warm welcome to the forum. Sorry to hear about this latest development with your Crohn's. I was aware that this could happen but that it's not as common as the stomach issues associated with the disease.
I'm assuming that you have those too? Where is it located and have you been on any other meds other than steroids for it? I'm curious too as to why you do not qualify for Infliximab. However, there are other treatments and you'll find description and discussions on them here.

 

[Catt]

Thanks so much for your reply! I live in Australia and unfortunately inflixmab is only available if you have active Crohns of the gut and mine is under control at the moment so I don't qualify even though its active in my lip. It's affected my bottom lip on the right side only, it's probably 3 times the size it should be so as you can imagine its very upsetting! I'm on Imuran and Salafalk and have been for 9 years, I am on very low dose now because Crohns is under control. Thank you again for your help! xox

 

[kiny]

They're prescribing infliximab for the swollen lip?

 

[Catt]

Hello kiny, the biopsy is consistence with Crohns so specialist has advised that imfliximab would take away the lip swelling but in Australia I'm not eligible, it has to be in the gut.

 

[kiny]

Seems drastic that's all, I never heard of anyone prescribing it for oral inflammation. Did they use topical steroids or oral?

 

[Catt]

Both and neither has worked. The swelling is very bad on my lower lips, any suggestions?

 

[kiny]

They can inject steroids too, triamcinolone. They use it for orofacial granulomatosis.

 

[Catt]

Thanks! Do you know if GP can do this or has to be a specialist? Thanks again!!

 

[kiny]

Or a dermatologist. They treat people with orofacial granulomatosis too.

 

[Catt]

Thanks so much, have not had much help so will try dermatologist.

 

[Aussie]

Hi Catt, would agree with Kiny, sounds like orofacial granulomatosis. Around 50% get a good benefit from a cinnamon and benzoate free diet, you have to be really strict with it though. If that doesn't work, fortnightly injections of triamcinolone into the lip should resolve it within a month or so.

Best wishes.

 

[Catt]

Hi Aussie, thanks for your reply. Just wanted to ask if you knew if the injections would be done by GP or Specialist? Both have been very unhelpful with this condition.

 

[Aussie]

GP won't know. Specialist (ie. gastroenterologist - probably won't know unless they specialise in IBD, although wouldn't do the injections themselves). Try an oral medicine specialist or dermatologist.

 

[Catt]

Great, thanks so much for your help!

 

[pb]

My bottom lip swelled up huge on me when I was 19, no other signs of CD with the exception of perianal crohn's skin tags that started younger in my teens but I was told they were just hemmies (turned out they weren't though, instead they were in fact perianal crohn's skin tags) anyhow, I went to the ER for my lip cuz it freaked me out and the ER doc was baffled, he figured I had an allergic reaction to something (I'm pretty sure it was early signs of CD just as the perianal crohn's skin tags were, instead of my CD starting internally as it normally does, it obviously started externally with the anus and my bottom lip swelling up....that only happened that one time with my lip and even though I got very sick with my CD internally and the anal tags got worse in my mid 20's I still never had another episode with my lip...I iced it and after about a week the swelling finally went down.

 

[JoFowler]

Interesting to hear about the cinnamon and benzoate free diet. My lip broke out the other day, first it swelled, then scabbed over. That was a few days ago, and now I have a few small mouth sores inside my mouth as well.

Last week I discovered Cinnamon Pastry coffee, in the Keurig cups, and it is my favorite. I wonder if this influx of cinnamon is what I am reacting to? Easy enough to solve, but really? Eliminate something else that I love _SIGH