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Uh, my lip swelled up some again!

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Crohn's Disease
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Posted 9/10/2008 5:57 AM (GMT 0)
So I've been having this problem with these itchy bumps. Started as soon as I went off the prednisone. Started on the bottom of my foot again, just like it was earlier in the year. Then I started getting them on my face. They itch, kinda like my foot. They pop up, then go away in a few days. Then I get new ones. Reminds me of perhaps chronic hives?

Well tonight I felt one wayyyy too close to my lip. Pretty much on the edge of it. A few minutes later it felt hot in that spot, and started to swell up! I paniced because I didn't want another swollen clown lip like I had in May. I rushed and took a benedryl and put some ice on it. It's mostly gone down already. Which I guess means that helped. It's a little puffy still, and that small bump is still there.

I have no idea what is going on. An allergy? Am I flaring up again? Last time my SED rate was SUPER high when this happened, and a few days later the diarrhea symptoms of the flare kicked in. I just dread the thought of even calling the doctor again. I feel like I should just put up a tent in the man's waiting room!

Posted 9/10/2008 6:42 AM (GMT 0)
not sure aye i use to get really sore swollen blistered lips b4 i got diagnosed
Posted 9/10/2008 1:08 PM (GMT 0)
Hi Jen77. I actually have a similar problem. I get random hives quite often and I do get them on my lips sometimes...its a really weird feeling. However, mine only last for about a day. I just stopped prednisone about 2 weeks ago and I am in a big old flare right now.  I had a hive on my lip over the weekend and I was sitting at my desk at work yesterday and noticed that the underside of my wrist had all these bright red hives on it. I just put a little lotion on them and hope for the best. I hope you feel better soon.
Posted 9/10/2008 4:50 PM (GMT 0)
Yeah I really think it's some kind of hives. about a month ago I got them from being in the sun too long. I took a shower that night, and all around where I had sun glasses on, were hives. While they seem to go away, I just get new ones. It's really odd. They don't seem to do much, unless they get ON my lip like it did last night. The swelling is down, but the little bump hive is still there this morning. Thankfully Benedryl does help, it never got real big like last time, it stopped it cold in it's tracks. But it makes me sooooo tired. I wish there was something I could take during the day that would keep them at bay, but not knock me out!

I was reading an article about Crohn's patients having more hystamine in thier bodies then other people. Worries me because this all went hand in hand with my flare in May, just seems like there is some connection there. Guess I'll just watch everything, and see where it goes. Thanks Veebo and and eva124!
Posted 9/10/2008 10:41 PM (GMT 0)
Hmm. Unless it's some sort of inflammatory / autoimmune condition that's being suppressed by the pred, and flares as soon as you stop it?

Are you on any other meds that aren't in your sig; things like Rem or Imuran or Methotrexate?
Posted 9/11/2008 12:55 AM (GMT 0)
No, no other meds like that. Just what I'm taking in my sig. I was quite surprised that it came back as soon as I ended my taper, maybe a week after I ended it they started popping back up again. It's really strange! I'm going to go pick up some Claritin tonight, give that a try. Since I just can't take benedryl around the clock. But if it's some inflammatory process, I doubt it helps! I always seem to have the strangest things!
Posted 9/11/2008 3:38 AM (GMT 0)
my lips use be so annoying i use to get a red rash around the edge and it use to itch and all the doctors kept telling me to stop breathing thru my mouth GAAAHHH had to go all through highschool with girls asking if needed lip gloss!! also i use to wake up with them stuck together with blood really nice! i got them basically sorted atm i think they are due to how bad of flare im in and the steriods were controling things coz as soon as i got off em my lips are peeling again.
Posted 9/11/2008 5:01 AM (GMT 0)
That's terrible eva! Strange how many things this can effect, that you'd never think would happen. I think that's what I have so much trouble with, doesn't seem like something that should be happening with Crohn's. Not your typical symptoms. But I think there are a lot of us out there with these problems, just not something either people make that connection with, or not talk about!

But same here, as soon as I went off pred, it was back! Really stinks.
Posted 9/11/2008 5:26 AM (GMT 0)
With crohn's being able to affect the entire GI tract from mouth (starting with the lips) to anus it only stands to reason that it very well could be strongly related to your CD.

I got sick and DX with crohn's in my early 20's externally on the anus and internally as well BUT my CD started on my anus with the perianal crohn's skin tags when I was a teen they appeared but they would just go away on their own and one time when I was 19 out of the blue I got what I thought was a blister on my bottom lip, within a couple days my lip swelled so huge that you almost couldn't even make out the blister that it started as, I even went to the ER because it really freaked me out, I've had blisters on my lips before but nothing like that so huge...the ER doc even thought it was odd especially size wise but at that time I had no CD symptoms other than the perianal crohn's skin tags which every doc at that time told me was hemheroides...putting 2 & 2 together now it all makes sence that that was the true beginning of this sneaky stinkin disease...however, to this day my lip has never ever done that again. WEIRD, but crohn's is like that.

BTW, the ER doc just said to put ice on it and left it at that...it took a couple of weeks before it was completely gone and it never did scab or burst like a regular blister on the lip.

:)
Posted 9/11/2008 4:40 PM (GMT 0)
Thanks for sharing what happened to you pb4! It really is comforting to me, to know that other people have had such symptoms too. Sometimes I feel rather alone with this one! I was really hoping I wasn't going to have it happen again after it did in May! I don't know what it is about having your lip get that big, that makes me panic like that. But it's just horrible to me! At least the benedryl stopped it (and I also put ice on it too!). My doctor said it should be one of the least of my worries, in all that Crohn's could do to me! But he wasn't the one with the lip 10 times the size it should be!
Posted 9/12/2008 12:39 PM (GMT 0)

Hey Jen...just wanted to let you know I am hoping you find an answer.  i seem to get every skin thing except the pyoderma gangrosum.  I have never had my lips with hives, but I did have my whole body swell (and I mean the whole body).

Doc at the time recommended both Claritin and Pepcid or Prevacid????(ask your pharmacist for two OTC antihistamines that represent antihistamine A in one and B in another).  It did bring down the inflammation well.  I just get too dried out from them.  make sure you drink a lot of fluids when taking the antihistamines

Take care of yourself

Posted 9/12/2008 6:21 PM (GMT 0)
Wow, your whole body swelled up? That is really scary, and they also believed it was connected to Crohn's?

I wonder what it is about Crohn's, that also triggers some kind of histamine response? Since the antihisamines seem to help it. I'm on my second day of Claritin, and have my benedryl on hand if I feel it's not doing enough by itself. I have seasonal allergies anyway, so if the Claritin prevents this problem, I'll gladly take it to prevent! Thanks for the tip about the fluids too, I didn't think about that!
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