Anyone else have Angioedema?

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Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/2/2008 3:11 PM (GMT -7)   
So here I thought the Crohn's was just effecting my joints yesterday. I went to bed, and awoke at 5 am to my bottom lip be VERY swollen, and kept getting bigger! It was just huge. I called my doctor at 6am, because at this point I was freaked out. Obviously my lip isn't a joint.
 
So I go back in to see him a few hours later. He already had my blood tests back from yesterday. My Sed rate was 78. Pretty darn high (he said it should be 20?). He says Angioedema is also a complication of Crohn's. He believes my Crohn's is flaring and this is part of it.
 
So I took my steriods this morning, and will be starting the Flagyl shortly (want to get some food in me). My lip has gone down quite a bit. But is still swollen. This has been a nightmare. I had no idea Crohn's could make things swell like this elsewhere. Now I fear it making my throat or tongue swell up. :(
~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


Irish_Mom
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Date Joined Apr 2007
Total Posts : 385
   Posted 5/2/2008 3:28 PM (GMT -7)   
Angioedema is a reaction to an allergen. I've never heard of it being caused by Crohn's. There is something called hereditary angioedema that is an autoimmune type of thing, but it's pretty rare. If you're having joint pain, that can also be a reason for an elevated sed rate. Hope you feel better soon.

Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia - didn't work.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


hcv299
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Date Joined Apr 2006
Total Posts : 22
   Posted 5/2/2008 4:18 PM (GMT -7)   
I have been diagnosed now for over 16 years and I can recall having mild symptoms years before that. I too have noticed that before I have a flare up it always starts by my left eye becoming swollen. I look as if I got socked in the eye. After a few hours it will go back down and then all of the other fun starts. I never really thought about it being anything before. The first time it happened when I was a teenager I recall having hives for 2 or 3 days. I guess I will have to bring it up next time.
 


Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/2/2008 5:12 PM (GMT -7)   
Yeah I read about it being a possible allergic reaction, however that kind is supposed to itch. And I don't have any itching. I've also read that it can be connected to a lot of things, including AI disorders, Lymphoma ect... To me it makes sense, it's an inflammatory response going on in the body. Which is what Crohn's is, inflammation.
 
Since I haven't taken any new medications, ate a new food, or anything like that I have no idea what I'd be having such a reaction to. My stomach hasn't been doing well over the last few weeks. I was just attibuting it to foods I was eating. But with a sed rate that high, I don't think so now.
 
As for my joints, it's weird because I really wasn't have a lot of joint pain. I had my left thumb swell up ABOVE the joint. As well as swelling on the bottom of my foot (which could be a joint, but it wasn't on my toe). So that's why when my lip swelled I knew this had nothing to do with my joints.


~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.

Post Edited (Jen77) : 5/2/2008 6:15:43 PM (GMT-6)


Irish_Mom
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Date Joined Apr 2007
Total Posts : 385
   Posted 5/2/2008 9:58 PM (GMT -7)   
Yes, the hereditary angioedema is that kind that doesn't itch. We have a patient who also has lupus that has bouts with it. Sed rates are something you have to kind of take with a grain of salt. When my son had his severe bleeding to the point of needing transfusions, his sed rate was slightly high; but when his AS started, it went through the roof. I'm not saying that your high levels mean nothing; quite the contrary actually. Don't let a normal one give you the sense that everything is okay if you don't feel okay. Did that make any sense? LOL
Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia - didn't work.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 5/3/2008 11:36 AM (GMT -7)   
Well I took a blood test yesterday to see if it's the hereditary kind, I won't get those results back until next week sometime. I understand that's quite rare, and no one in my family on either side has ever had any kind of symptoms like that. So I'm still hopeful that my doctor is right, plus I have found information on it also being caused from illness and autoimmune diseases. So I think that's a real possibility.

I'm doing a lot better today. My lip is almost back to normal. No new swellings. I just don't know where to go from here. We have a vacation with a 10 hour road trip coming up in a month. Not sure how I'm going to carry on day to day, without worrying about this coming back.


~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


jodyisme
Regular Member


Date Joined Dec 2006
Total Posts : 70
   Posted 5/3/2008 2:19 PM (GMT -7)   
does benadryl cause it to go down? if so, its a allergic reaction and doesnt have to be to a new med or food. asacol is kin to aspirin and since im allergic to aspirin, i get the same thing, swollen lips and face which does not itch, i have to be careful of ANY related drug. any time one can get this salicylate sensitivity, not a true allergy actually.
 
just a thought. best of luck to you!

Chronicallyill
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Date Joined Apr 2008
Total Posts : 195
   Posted 5/3/2008 3:21 PM (GMT -7)   
Not to butt in, but what are sed rates?

Jen77
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Date Joined Mar 2006
Total Posts : 2690
   Posted 5/3/2008 5:16 PM (GMT -7)   
jodyisme, I'm really not sure if the benadryl helped or not. I took it around 6 am, my lip got bigger for the next hour or so (but this was when it all started). Then it went down, by the afternoon it was almost completely back to normal. It very well could have helped. I had also taken the steriods at 9:30 that morning as well. My thumb went down the next day after it swelled, so it took a little longer (I didn't take the benedryl with my thumb). And my lip was way more severly swollen, so I can I can assume that it helped? I'm glad to hear you don't have itching with it as well. I thought that it was for sure not allergy related if it didn't itch. I've been on asacol for a few years now, not to mention birth control pills, and a beta blocker. I've taken them all for a long time.

The other thing I thought of was the night before my foot had swelling we went miniture golfing. They had tons of fire ants running around. I never have found a bite mark, but I know in the past they've caused me to have a red itching welts on the area they've biten me. But like I said, I haven't found a mark yet.

My white blood cell count was also quite high my doctor said. I was reading that isn't usually the case in the hereditary type. I'm driving myself nuts with this though. I hate waiting for test results. And I'm giving myself panic attacks thinking about my throat closing. I need to stop reading so much online about it, you can really scare yourself. :(

Chronicallyill- By sed rate I mean the Sedimentation rate that they can check by blood test. It can show how much inflammation is going on in the body at that time. As someone else said, it isn't the only thing that should be looked at, that's for sure. But in my case I think it was a big part of the puzzle that something is going on. It's quite common for doctors to want to check that rate for those of us with Crohn's.


~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


jodyisme
Regular Member


Date Joined Dec 2006
Total Posts : 70
   Posted 5/3/2008 5:50 PM (GMT -7)   
all my lip did was be numb.. and huge..lol. i didnt relate it either as did the dr or pharmacist...until once i took the benadryl and the lip went down but in a hour i was completely hoarse. scared well....immensely is a nice word for it. the ER dr didnt want to, but gave me something like pred for it and it went away. then i knew, this is some reaction to something......and all i had taken was excedrin. yep.
 
i began reading, and i learned it could be salicylate sensivity. my cheek had swelled also,,,it would come on like in a second. and go away just as suddenly. quite weird. but it never itched at all.
 
i am too scared to try it again to see what happens...so i just wont take a thing kin to aspirin. asacol, pepto bismol, even the body rubs for joint pain. it is somehow connected to the body (again, immune system stuff) becoming sensitive and reacting to a amount of salicytate. each person who has this could react to a diff amount. i wont chance it.
 
like you, i am extremely afraid of it happening again. mine went on for months before i connected the dots to it. and people who are prone to angioedema also are sensitive to ace inhibitors like certain blood pressure meds also. do you take one of those?
 
this may not be what you have at all, but i wanted to give you another opinion in case, is all. i understand your fear so well,,,i have the panic attacks also. i relate to that so well...im so sorry you have them also. try to breathe, slowly , and ground yourself during them. like snap a rubber band or rub the arm of your chair...
 
the fire ants here in texas leave a spot, pus filled thing, nasty. and burn like heck. they can cause a reaction also...
 
best, best to you with this. i send you good vibes and calming prayers.

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 5/3/2008 6:13 PM (GMT -7)   
Thanks so much jodyisme, you've really been a great help. My lip was the exactly the same way, huge and numb like. Felt so big like it was going to burst. Just awful, and so embarrassing.

I don't take a ace inhibitor, just a beta blocker. I read about the ace ones, never gonna go there! LOL If it is allergy related, it's so hard not having any clue what could be tripping it off! I keep going over everything that I think I've come in contact with.

Beginning to wonder if we should look in to flying instead of driving for our trip. Not sure I can handle 10 hours in the car, in the middle of no where for a lot of it. Thinking my throat could close at any minute. Does this fear get any better? I just wonder no matter what causes it, how in the world can I live with this fear??

Thanks for the good vibes and calming prayers. I appreciate it!
~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


jodyisme
Regular Member


Date Joined Dec 2006
Total Posts : 70
   Posted 5/3/2008 7:00 PM (GMT -7)   
if indeed this is somehow allergy related, keep benadryl with you and maybe a epi pen for the peace of mind.
 
the fear? i practice all the time, sometimes i win, sometimes the fear wins. calming breaths, stay grounded, repeat im ok, this will pass. takes time. i am always in fear of some allergy to something, as i am allergic to so many meds.
 
life is for living...not for fear. (i sound good, dont i? lol) i do it all day by day.
 
i still wonder if its the asacol salicylate content, if indeed we are talking allergy. do you take anything else related? pepto? pain rub? mine came out of blue sky, one day i began it. as i said, took months for me to figure it out.
 
and yours may be something else entirely. im allergic to cipro also...sheesh.
 
big hugs.....i dunno, i might freak worse flying. lol. (im kinda a fear person, i know , its not good)

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 5/3/2008 9:00 PM (GMT -7)   
Oh trust me, I HATE flying. So it's a big thing for me to say I'll fly. I think I just hate the idea of driving with that fear worse. So now my regular hay fever allergies have been bad today (everyone around here is). So tonight my voice is a little scratchy from it. At least that's what I think it is. LOL You know it's something you'd never think twice about, but now I'm looking for every little thing. I can clear it, so I don't think I'd be able to do that if it was swelling. This will seirously drive me batty!

If it is allergy it will probably take me months to figure it out too. I can't think of anything else besides the Asacol that would be like that. So I just don't know. My inlaws were in town the day before and the day it started. I've already said I'm allergic to them! But we went out to dinner both nights, so who knows if I ate something even that I didn't know was there, or that I was allergic too.

I really want to believe the steroids and the benedryl helped though. That lip went down pretty fast. If it did help, I'm hoping that means it's just allergy. I'd rather it be allergy so that I COULD carry an epi pen at the very least. The other way that doesn't even work. Such a scary awful thing. :(
~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


jodyisme
Regular Member


Date Joined Dec 2006
Total Posts : 70
   Posted 5/4/2008 9:04 AM (GMT -7)   
i sure understand the idea it helps to know what caused something. if not, we just worry even worse. i know i wont try anything with aspirin in it to see!
 
im not sure i understand salicylate sensivity--im pretty old and just one day...bam,...it began.
 
"a little scratchy" dont worry. it will like go in a second. i mean, almost no voice at all. so dont freak on the small hoarseness. allergies are terrible right now here also. gotta love spring!
 
i think if it keeps happening, you could look at something your still doing. maybe a everyday thing...or something. lol@ in law allergy. i have son in law allergy...lol lol.
 
hang in ((Jen)) 

Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 5/4/2008 4:33 PM (GMT -7)   
You were right about the scratchy throat. It was just allergies! Whew! So far so good today, no new swellings. Lip still looks good (well a little discolored from being so swollen). I'm hoping I'm in the clear now, at least for now!

Thanks again so much, you certainly helped me get through this weekend a little more calmer then I might have been. Hoping for some good news this week from the doctor.
~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


jodyisme
Regular Member


Date Joined Dec 2006
Total Posts : 70
   Posted 5/4/2008 5:44 PM (GMT -7)   
aw im so glad this helped! i hope for good news from the dr, let me know?
 
talking to you helped me too..:) hang in there.
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