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Nope, never heard of this one....

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Crohn's Disease
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Posted 3/28/2008 6:29 PM (GMT 0)
So I went to my GP this morning because of some ear issues I've been having. My ears have been itching like crazy! I was telling her about these flakes of dead skin. I said it was almost like psoriasis of the ear. She was nodding her head while I was telling her all this and then she said, "You know this is Crohn's related too don't you". She says she's seen it before and that it had some name that she couldn't remember. She was going to research it for me to find out what to do.

Anyway, that was a new one to me.
Posted 3/28/2008 7:22 PM (GMT 0)
Leave it to you, Pup, to come up w/some Crohn's related thingie so "rare" your doc can't remember the name of it and has to look it up!!!! At least you've got a doc interested enough to say she'd look it up on her own initiative. That is a rare quality!!!

Goshes, but I'm gonna miss my annual visit to KY this year. *sigh*, couldn't get an appt until August so might as well wait 'til next year.

And the bigger Rolex gets the less fun it is, except for the Trade Fair, of course!!!! I'll just buy the video this year, I guess. What the heck, that new arena is so big no one can get close enough to actually watch dressage and stadium jumping in the flesh. If I'm gonna watch it on a TV screen might as well watch it at home on our TV/Video monitor.

Hmmmm. I wonder when they're gonna put it on DVD instead?

I AM already signed up to WORK the 2010 games tho!!!! I've got a friend who usually works the Rolex each year and she asked if I'd like to volunteer to work. You kidding??? Of course!

Since I can't get in to U of KY the end of April, am heading to Mayo in MN in mid-April to see Dr Tremaine. Got lucky tho, my neighbor has to go back for some tests so we'll go together, the hubbies can stay home and WE can do some fun things w/o them. *wicked grin*

Posted 3/28/2008 7:47 PM (GMT 0)
I'll say I have the best GP in the world! The past few months have been awful - she's been off having her first little one. She calls me her case study - I think I amuse her. The whole lung thing just confuses her and everyone else.

Working the 2010 games?!?!?! Are you serious! I can't imagine the ocean of people that will be there, I don't even won't to be around just because of the traffic!

pup
Posted 3/28/2008 11:18 PM (GMT 0)
Ah! Thank you! I've always had the flakes of dry skin in the ears and have wondered what they were. I thought everyone had them but never talked about the problem. Now I know better.

Incredible that they're Crohn's related. I'd be interested to hear more when you learn more yourself.
Posted 3/28/2008 11:22 PM (GMT 0)
Interesting, never heard that one before. But with 200 possible complications I'm sure I'm far from seeing it ALL.

Matthew
Posted 3/28/2008 11:25 PM (GMT 0)

Me too!  My ears are itchy everywhere outside of the ear canal.  Well, that itches too but it is the only place that is not dry.

It sure would be nice if there was a book or something with all the problems and disorders that crohn's can cause.  Maybe it's just me, but I like reading that something weird on me is just from crohn's and isn't some other unrelated problem I have to live with too.

Posted 3/29/2008 1:25 AM (GMT 0)
Hey, Pup. Bring me up to date! WHAT lung problem? You were or are on Remicade, right?

They ran a clinical trial on Remicade to treat COPD and had to discontinue the trial early. Remicade is known to have a risk for affecting the lungs - I forget the term for the problem it "can" cause, but it is known that there is "some" risk to the lungs as an undesirable side effect. Given the absolute necessity of healthy lungs the risk is NOT high or the powers that be would NOT be recommending a swing to the step down theory in treatment for Crohn's w/Remicade and its relatives.
Posted 3/29/2008 2:00 AM (GMT 0)
Put me on the itchy ear list too! I wouldn't want to miss out on what the heck this one is! I do have psorasis but no flaking in the ear...just the mad itch. I wonder if it's yet another fungus amoung us?
Posted 3/29/2008 2:26 PM (GMT 0)
ME too, me too. this has been bugging me for some years, and also if your doc could find out why my hair hurts like I've had
it in ponytail. I'm only kidding about telling your doc!!! but I would love to know.
Posted 3/29/2008 8:36 PM (GMT 0)
OK everyone, I will let you know what I find out. For now she's given me some Cipro HC drops to help.

C2, as for the lung problem....It started about a year after the Remicade. I got a pleural effusion about 5 weeks or so after my last infusion. That got so big they had to tap the lung and drain the fluid. The pain continued until they decided to do a plueroscopy. They didn't find any more fluid in there, but did see the the lung wall had some type of "hard coating: on it. No one to this day, two years later, knows for sure that it was the Remicade. My GP is positive that's what caused it, but neither the Pulmonary people nor my GI will say it. My lung still hurts when I take deep breaths and sneezing is an adventure!

And just for the record, I've never smoked, so I don't think that's causing it.


pup

Posted 3/30/2008 3:22 PM (GMT 0)
I too have had that happen on occasion sometimes I would scratch them til they bled. My father had similar ear issues but he doesnt have IBD, he has GERD. His ENT has him put Betamethasone valerate in his ear...so I have that as a script for hemmies so when I need to I use my hemmie cream since it is just a topical skin cream in my ear.

forgot to add that when laying down with that ear facing the pillow I would sometimes get a clearish drainage with a foul odor.  Have you ever had that occur too?

Posted 3/30/2008 10:02 PM (GMT 0)
Has your GP tried contacting Centocor (aren't they the makers of Remicade?) and ask about lung problems and Remicade. They'll admit to doctors things they won't admit to patients. Or you can even check w/FDA yourself. There is a FDA website that presents information on after market suspected side effects reported for a particular drug. Trouble is, most suspected after market side effects don't get reported. Doctors should, but all too often it is the patient who does the reporting.
Posted 3/31/2008 1:21 PM (GMT 0)
DragonFly... My GP Mentioned a cream that her practice partner had prescribed, but again couldn't remember the name of it. She was going to ask him what it was, so it may have been Betamethasone. I have a lot of clear stuff coming out of my ears and yeah it's not the best smelling stuff around. I told my GP that I have become addicted to Q-tips (I know your not supposed to use them, but ears should itch like this either).

C2, My Gi actually went to a big conference with the Centor people a couple of months after the lung issue, they said they had never heard of a problem like mine (go figure). Everyone except my GI and Centor thought it was the Remicade that caused it.
Posted 3/31/2008 2:10 PM (GMT 0)
when I use to be on remicade whenever I got a cold I would end up with a chest cold which would always turm into bronchitis and at least 1 time a yr turn into pneumonia.
Posted 3/31/2008 7:31 PM (GMT 0)
Well, Pup, at least it sounds like the ear goop is doing its job and cleaning out any fungus/infection, whatever was causing the problem. GOOD LUCK. Itchy ears are as bad as an itch on the bottom of your foot, like in the arch!! Can drive you stark raving outta yer mind.

Whatever lung problem Remicade IS KNOWN to rarely cause mebbe it isn't the same type of problem as what you've managed to come up. (You just like to be different and difficult, do you?). Good luck and God bless w/that too. Sheesh! Somewhere along the line you oughtta get a break soon, you certainly deserve one!
Posted 3/31/2008 11:39 PM (GMT 0)
Is it bad that as I was reading this thread my ear started itching...really! HAHA!

I haven't really experienced that with Crohns but I'm not surprised with all the parts of your body that are affected by this disease. I get really dry hands when I'm flaring...they are dry and itchy and I can't help but scratch them until the bleed - ouch.
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