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So your lip can swell because of Crohn's

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Crohn's Disease
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Posted 5/14/2008 4:34 PM (GMT 0)
Since I was still in some disbelief, my husband found an article and sent it to me this morning. about a 25 year old man, bottom lip got huge (like mine did). They did a biopsy and sure enough came back as Crohn's Disease. When the disease started acting up in his bowels he'd get lip swelling, as well as swelling of other areas.

So it seems like not the most common thing, but it's good to know I wasn't losing my mind, and that my doctor was right. Just such an odd presentation of a flare, I had no idea. I also know that my rash I had on my legs wasn't ezcema either, but Crohn's. Looks like I was flaring up for quite a while and just ignoring all the warning signs.

Just good to keep in mind, if you ever wake up with a fat lip, could be Crohn's saying hello. Geesh, I really didn't want to believe this can attack us in SO many ways! Rather then me just watching for the typical bowel symptoms, I really need to start paying attention to the other things too. Maybe I wouldn't be in such a big flare if I had!

Posted 5/14/2008 4:45 PM (GMT 0)
Same thing with my swelling ankles.

My GP said I must have twisted my ankle or hit it on something...Uh NO I DIDN'T, I said,

In January, my GI told me my swelling ankles were NOT related to Crohn's...until I said, "But don't you think it could be Crohn's Arthritis?" and then he said, "Well it could be, but not likely."

2 months later I went to my GI's office to see his Nurse Practitioner. He IMMEDIATELY said, "Oh yeah - you're definitely in a flare. Those swollen ankles say it all!"

The NP ended up telling me that they had a college student as a patient who had to skip a semester of school because his ankles were swollen so bad he couldn't walk for months. He's been diagnosed with Crohn's yet has NO intestinal problems whatsoever. His Crohn's shows up in the EXTRA-intestinal stuff...like swollen feet....

Or LIPS in your case!
Posted 5/14/2008 5:01 PM (GMT 0)
Wow, isn't that just the oddest thing? I would have never guessed in a million years it would such a thing.

When my hand, thumb, and bottom of my foot had swelling I was worried, but still thought Crohn's could be causing it. But the lip? That was just out there to me. LOL Now I'm just getting some weird burning sensations here and there in my finger or foot. Kinda like it wants to swell, but because I'm on Pred it's starting to control it. Weird stuff, I tell ya.

All I know is he better keep me on the pred for a whle longer, I'm doing better, but it's only been a week on the 40mg. As much as I don't want to be on it, I think I need it for a whle. I don't want anything to swell up for a long time. LOL That was just traumatising! LOL
Posted 5/14/2008 5:50 PM (GMT 0)
SO weird! I NEVER would have thought my ankles swelling were Crohn's related...or your lip/finger! Particularly when you can SEE the swelling. I mean, it's not like joint arthritis where my ankles just hurt - my ankles swell up to the size of a lemon!

My ankle has been tingling/having-that-sensation like it might WANT to swell on me again...drives me NUTS because when my right foot really swells up, I can't DRIVE!

I'm currently tapering off Pred. Down to 10mg/day (started at 20mg). Next week will be my last week on Pred so I'll be interested to see if my ankles start swelling again once I'm off the Pred - because the first 2 weeks of 20mg/day I KNOW decreased the swelling my ankles. Now that I'm tapering down, I think my ankles are trying to swell again. I'll be interested to see if my GI thinks I need to stay on the Pred for a little while longer, too.
Posted 5/14/2008 6:04 PM (GMT 0)
I had my lip swell on me when I was around 18-19 yrs old before complete CD activity as I had the perianal crohns skin tags that would come and go on their own of which I was told they were only hemmies (NOT) but I had the lip swell, the bottom lip and it kinda looked like I had a blister way beneith the surface of my lip, never had anything like it before or since...at the time I was so freaked I even went to the emergency room, of course the doc there said it was unusual and just to keep ice on it for as long and often as possible..."unusual" I should have know something was up...between the swelling bottom lip and the swelling anus (on and off) I should have known...and it frustrates the heck out of me.

:)
Posted 5/14/2008 6:26 PM (GMT 0)
that is strange a lip related to CD, what next? I have a skin tag or something that swells and I know a flare is coming... I also had a mysterious ankle swelling before diagnosis and the Docs said I must have had some soft tissue damage since xray said nothing. Now I am wondering if the ankle swelling means a flare is happening? I do some little exercises that seem to help when it acts up. Karen
Posted 5/14/2008 6:45 PM (GMT 0)
karen - if your ankles have swollen, there's no question in MY mind that it was all a part of the eventual diagnosis of Crohn's for you.

My ankles swelled up, too, BEFORE I was diagnosed. That's when the GP said I must have twisted it! (NO I DIDN'T!!!) So he sent me for x-rays of my ankles which also showed nothing. He sent me home with Bextra. I had an allergic reaction, so he put me on Celebrex. Little did they know at the time that BOTH of those drugs weren't good for me, since at the time they didn't know I had Crohn's! Who would have thought I had Crohn's with just my ankles swelling?!

Crazy freakin' disease!!!
Posted 5/14/2008 7:39 PM (GMT 0)
I never had my ankle(s) swell...the lip thing isn't all that strange since your digestive tract does start at the mouth, lips included...CD can affect any part of the GI tract from mouth to anus.

:)
Posted 5/14/2008 7:40 PM (GMT 0)
Who would have thought the lip would swell? That's so strange!! I'm glad you figured it out though!

I'm dealing with my lower joints swelling, mainly my right knee. I just had some testing done yesterday
and found out today I have Inflammatory Arthritis due to my crohn's. If its not one thing, its another.
Posted 5/14/2008 7:46 PM (GMT 0)
pb4- Yep when you put it that way (from the mouth to anus) the lip swelling makes sense. Such an awful thing to have, you can't hide it from anyone! I'm used to "looking" well, even if I feel like crap!

LBJ- Sorry to hear your having some joint problems. I've had that lately too. It's true with this diease, if it ain't one thing it's another!
Posted 5/14/2008 7:53 PM (GMT 0)
I went to the dermatologist last year because my face would get all red and my lips would swell and burn. He said it was some sort of allergic reaction and prescribed zyrtec. I didn't take it because his diagnosis didn't make sense and now I know why.
When I found out I had crohns and not uc it made so much more sense. it explained the mouth sores and the itchy so called eczema rash on my hands. Not to mention the joint pain in my feet, wrists and shoulders that doctors just passed off to me being a runner.

I too, ignore symptoms that could be a sign of a flare. Sometimes I think we all wait to long to say anything about our flares for one reason or another.

Thanks for the interesting post!
Posted 5/14/2008 8:07 PM (GMT 0)
Sally, it's actually nice to hear from someone who has had similar problems. Seems like one you don't hear of all that often, and I was beginning to think I was all alone! LOL I thought it was worth making sure everyone knew though, I know it was quite the shock when I woke up to my lip being like that. I really thought I had something else, major, going on. But no, just this *fun* disease acting up.
Posted 5/14/2008 8:22 PM (GMT 0)
I had my lips swell up like bananas once along with a face rash! It was a few years back and I never knew what caused it. Now I guess I do!
Posted 5/14/2008 8:47 PM (GMT 0)
Yup, orofacial Crohn's is what they call it. Besides the lips, your gums and cheeks can also swell up. Doesn't this disease have all sorts of attractive side effects!
Posted 5/14/2008 9:06 PM (GMT 0)
Oh boy can it. Your whole mouth can. Mine has, especially after dental work. Its that wacky immune thing I guess..

Matthew
Posted 5/14/2008 9:16 PM (GMT 0)
Wow, you guys are making me feel so much better! I had no idea so many of you experienced the same things!! Whew, major relief!

I just hope I'm doing okay now, one of the tips of my ring fingers today is a little puffy. I see my GI tomorrow, and I've only been on Prednisone for a week. Maybe I'm expecting too much too soon? Hope he won't want to up the dose!! Yikes!
Posted 5/15/2008 1:28 AM (GMT 0)
I am in a flare right now , and I woke up yesterday with a swollen face....fat,fat face!! Thought I had a sinus infection so went to my GP, because my face also hurt. She said no sinus infection, didn't know what caused the swelling. Yippee....so now not only am I having problems with my Bladder, bowel, bones, painful jaw,and frontal bones...now I get to have a fatter face to make things even more interesting....my face is fat at the best of times....wish I could just prick it like a balloon and it would deflate!
Sore, poopy, pp, tired and fat faced old Mary!
Posted 6/30/2009 6:12 AM (GMT 0)
so i feel like this is a good place to ask. has anyone had a big lower lip for more than a flare up? i am 20 years old and have had a big lower lip since i was 12-13. before that i had the most normal looking lip ever but now i live with it on a day to day basis and i want to see if anyone else has experienced this and what they did.

Posted 6/30/2009 12:49 PM (GMT 0)
Hey Jen! Glad you got an answer. I get the red face and puffy cheeks when i am in a real flare. My latest GP thinks it is actually swelling in the oral area that is showing up further up the face. I think you just solved my sore mouth with my last flare up. I thought I bit my lip!?!?

I also get the ankle problems...and my knuckles on my hands and wrist swell too. i have had days where I considered a wheelchair just to get going. But, it only happens in the bigger flares for me thankfully. Th skin issues...wow I feel like I have had a rash most of my life...every little flare or virus shows somewhere in my skin. One again I am thankful it is not PG

Big jimbo....are you stable on meds? One thing I thought of was perhaps you are just not in enough of a remission state.
Posted 6/30/2009 1:22 PM (GMT 0)
BigJimbo, you might get more responses if you make a new post instead of bringing up old posts like this. Most people see its an old post and don't respond.

Regards
Gail *Nanners*
Posted 6/30/2009 4:39 PM (GMT 0)
I didn't get internally sick with CD until I was 23 but I did have my disease initially start with perianal crohn's skin tags in my teens (which every doc told me were just hemmies) and I did have one episode of my bottom lip swelling up like a balloon when I was about 19 yrs old...at first I thought it was a blister on my lip but as it got bigger it didn't appear to be that, it scared me so bad I went to the hospitial, of course the ER doc was mystyfied and just told me to keep ice on it...sure enough it did go away and never once happend again after that (even when I became full blown sick with CD). CD is definitely a bizzaro disease.

:)
Posted 7/1/2009 12:08 AM (GMT 0)
Oh my, seeing this post again gives me nightmares of what happened last year!!

BigJimbo, with treatment of my flare my lip went back to normal. Thankfully it hasn't gotten big again since, but I'm also in remission. It was a scary thing, and I admit to this day I check my lip here and there if I think it feels puffy or something. Even though it's not.

I did quite a bit of reading on lip swelling and Crohn's when this happened. I remember reading about Granulomatous cheilitis, and it being related to Crohn's. Might be something to bring up with the doctor, and see if you need more treatment then your getting. Good luck to you!
Posted 7/5/2009 2:42 AM (GMT 0)
I remember reading that whatever is going on inside of us will come out in the skin.  I get the mouth sores and the fat lip too, the rashes and the sensitivity to heat and sun, and of course the joint pain.  It's all very strange, but my g.i. told me that it is like having Crohn's inside out, and it's true.
Posted 7/5/2009 11:30 AM (GMT 0)
can crohns cause your eyelids to swell up too? mine have been on and off, they become all itchy, and really dry and wrinkly looking. the skin starts to come off they get so dry!
Posted 7/6/2009 3:56 AM (GMT 0)
My gums swell & I get sores in my mouth when really flaring..I had one incident a couple of years ago I had a continual feeling of my tongue feeling burnt..My lips don't swell..They do after dental work..I had my front teeth worked on about a week ago, and the swelling is just now going away..

 

Cindy

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