Crohn's and swollen lip

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Mr. Denial
New Member

Date Joined Jul 2009
Total Posts : 17
   Posted 5/1/2010 6:23 PM (GMT -7)   
Anyone out there with Crohn's in the mouth area, specifically swollen lips? I've lived with CD for about thirty years in my small intestines (ileum), but my son went to a specialist recently because of a chronic swollen bottom lip which the doctor believes is Crohn's. It had gotten better for awhile, but has now moved into his upper lip. We're wondering if anyone has found a treatment that seems to help this apparently rare form of the disease. I take Pentasa and Humira which has helped me somewhat . . . at least it's kept me out of the operating room.
Prednisone (20mg), Flagyl, Pentasa, Humira, Prilosec . . . hospitalized for two obstructions, no surgery to date, CD in ileium

Veteran Member

Date Joined Mar 2006
Total Posts : 2739
   Posted 5/1/2010 8:42 PM (GMT -7)   
Yep, a few years ago I had a flare up where my bottom lip swelled up HUGE. It scared me pretty good, I've never had anything like that happen before. My inflammation rates in my blood were through the roof, and soon after the massive D had kicked in. But my doctor said it was from Crohn's, as he reminded me Crohn's is from the lips to the anus. He had me on prednisone and it took the swelling down, I was on it for a while and thankfully it did take care of the flare (and the swelling). Hasn't come back, but I think it's one of those things where you have to get the flare under control to get the swelling under control.
However I have read online about a few chronic cases of lip swelling due to Crohn's. So I do believe that can happen as well. Sorry to hear your son is having to go through this though!
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 5/2/2010 6:21 AM (GMT -7)   
It's not very common, so there aren't many reports describing treatments, but I have seen a couple of case studies of lip and facial swelling in children with Crohn's that has been successfully treated with total enteral nutrition (full liquid diet for a few weeks to induce remission). It avoids the side effects from prednisone, which is also an option. Going Remicade/Humira route would likely also help, but if your son is otherwise in good shape, it may not make sense to go to the big-gun drugs so early.

Mr. Denial
New Member

Date Joined Jul 2009
Total Posts : 17
   Posted 5/2/2010 6:05 PM (GMT -7)   
Thank you for responding! I'll pass your input on to my son.
Prednisone (20mg), Flagyl, Pentasa, Humira, Prilosec . . . hospitalized for two obstructions, no surgery to date, CD in ileium

Regular Member

Date Joined Apr 2010
Total Posts : 232
   Posted 5/2/2010 6:28 PM (GMT -7)   
Hi Mr. D,
I've never had swollen lips, but I have had severe mouth ulceration to the point were I lost the taste on the left half of my tongue (that was weird beyond woids).

I find chomping on a Vitamin E capsule a couple of times a day, definitely 1 just on the way to sleep. I chew the cap just to open and get the oil out, try to get it where I need it most and then I spit out the capsule. I find this heals them fast, a few days at most. It was a nice little discovery.

I assume more tests are in order for you son, before they make a plan? Or has he be Rx'd something arleady?

( Re Vite E caps -- they make a multi-sourced vite E now, though the price can vary greatly, I go for the mid range at the health food store)

Mouth Crohn's is not fun, uh, but what Crohn's is... Oh ya, NO CROHN'S!

I hope your son is better soon...
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 5/3/2010 10:36 AM (GMT -7)   
When I was 19 yrs old (before getting crohn's) I had one weird incident of a swollen bottom lip, it was different from times before when I got a blister on my lip because although that's what I thought was happening (there was a hard bump resembling a blister) instead of it being a regular blister all the sudden my entire bottom lip swelled right up, I was so freaked out about it that I went to the ER and that ER doc had no clue, just told me to put ice on it, so I did and it went only ever happend that one time...3 yrs later, WHAM, got sick with crohn's.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

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