I stumped the best minds at Mayo--UPDATE

[Guest guest]

Well, the pain, swelling, and lesions in my throat finally got too

bad, and I went to the hospital on Monday.

I finally peed after five liters of fluid...a new dehydration record

for me. They also put me on a morphine pump for the pain, which eased

the pain and helped me sleep. That finished the triage stage.

Meanwhile, the throat biopsies came back negative for all bacteria,

viruses, fungi, and everything else. By process of elimination, that

left us with the conclusion that this was a crohns flareup.

We had gotten bold and deferred the normal 8-week remicade infusion

cycle to 12 weeks, with the next infusion scheduled for December.

Interestingly, all of this started flaring up about nine weeks after

the last infusion.

So, I had a new remicade infusion late on Wednesday, along with a

prednisone drip. Within hours, the inflammation had reduced, and the

lesions started shrinking. They released me late yesterday in time to

be home for Thanksgiving.

My throat is still sore as the remaining lesions and ulcers heal, but

it's not nearly as bad as it was. All of that morphine has me in a

fog, too, but I can deal with that.

Lesson learned: crohns can flare up big time in areas other than the

lower gi tract. If this truly fixes it, I'll maintain an 8-week

remicade cycle. Interestingly, during all of this, my belly and below

were just fine. Go figure. Just another adventure in this crazy disease.

Tom

PSC 99

[Guest guest]

Tom I'm so glad you got things cleared up and were home in time for

turkey. What an ordeal!

wife of

UC & PSC 2000 J pouch 2004 Tx 11-18-06

[Guest guest]

WOw, we've all heard that crohn's can flare anywhere, but I've never actually heard of a flare in the throat. I have UC and I tend to get mouth sores & ulcers in the mouth. Anyway, glad the cause was found and is treatable.Marie

To: From: tom@...Date: Fri, 23 Nov 2007 12:30:57 +0000Subject: I stumped the best minds at Mayo--UPDATE

Well, the pain, swelling, and lesions in my throat finally got too

bad, and I went to the hospital on Monday.

I finally peed after five liters of fluid...a new dehydration record

for me. They also put me on a morphine pump for the pain, which eased

the pain and helped me sleep. That finished the triage stage.

Meanwhile, the throat biopsies came back negative for all bacteria,

viruses, fungi, and everything else. By process of elimination, that

left us with the conclusion that this was a crohns flareup.

We had gotten bold and deferred the normal 8-week remicade infusion

cycle to 12 weeks, with the next infusion scheduled for December.

Interestingly, all of this started flaring up about nine weeks after

the last infusion.

So, I had a new remicade infusion late on Wednesday, along with a

prednisone drip. Within hours, the inflammation had reduced, and the

lesions started shrinking. They released me late yesterday in time to

be home for Thanksgiving.

My throat is still sore as the remaining lesions and ulcers heal, but

it's not nearly as bad as it was. All of that morphine has me in a

fog, too, but I can deal with that.

Lesson learned: crohns can flare up big time in areas other than the

lower gi tract. If this truly fixes it, I'll maintain an 8-week

remicade cycle. Interestingly, during all of this, my belly and below

were just fine. Go figure. Just another adventure in this crazy disease.

Tom

PSC 99

Connect and share in new ways with Windows Live. Connect now!

[Guest guest]

Hope you enjoyed Thanksgiving, despite the remaining pain! Glad you finally found an answer.

Joanne H

(, Ca., mom of , 17)

-----Original Message-----From: [mailto: ]On Behalf Of Tom Sent: Friday, November 23, 2007 4:31 AMTo: Subject: I stumped the best minds at Mayo--UPDATE

Well, the pain, swelling, and lesions in my throat finally got toobad, and I went to the hospital on Monday.I finally peed after five liters of fluid...a new dehydration recordfor me. They also put me on a morphine pump for the pain, which easedthe pain and helped me sleep. That finished the triage stage.Meanwhile, the throat biopsies came back negative for all bacteria,viruses, fungi, and everything else. By process of elimination, thatleft us with the conclusion that this was a crohns flareup.We had gotten bold and deferred the normal 8-week remicade infusioncycle to 12 weeks, with the next infusion scheduled for December. Interestingly, all of this started flaring up about nine weeks afterthe last infusion.So, I had a new remicade infusion late on Wednesday, along with aprednisone drip. Within hours, the inflammation had reduced, and thelesions started shrinking. They released me late yesterday in time tobe home for Thanksgiving.My throat is still sore as the remaining lesions and ulcers heal, butit's not nearly as bad as it was. All of that morphine has me in afog, too, but I can deal with that.Lesson learned: crohns can flare up big time in areas other than thelower gi tract. If this truly fixes it, I'll maintain an 8-weekremicade cycle. Interestingly, during all of this, my belly and belowwere just fine. Go figure. Just another adventure in this crazy disease.TomPSC 99

[Guest guest]

Wow. Sorry that happened! I'm glad that you are feeling better and

you got some answers. Hope you had a good Thanksgiving!

PSC 8/07

PBC 10/06

>

> Well, the pain, swelling, and lesions in my throat finally got too

> bad, and I went to the hospital on Monday.

>

> I finally peed after five liters of fluid...a new dehydration

record

> for me. They also put me on a morphine pump for the pain, which

eased

> the pain and helped me sleep. That finished the triage stage.

>

> Meanwhile, the throat biopsies came back negative for all bacteria,

> viruses, fungi, and everything else. By process of elimination,

that

> left us with the conclusion that this was a crohns flareup.

>

> We had gotten bold and deferred the normal 8-week remicade infusion

> cycle to 12 weeks, with the next infusion scheduled for December.

> Interestingly, all of this started flaring up about nine weeks

after

> the last infusion.

>

> So, I had a new remicade infusion late on Wednesday, along with a

> prednisone drip. Within hours, the inflammation had reduced, and

the

> lesions started shrinking. They released me late yesterday in

time to

> be home for Thanksgiving.

>

> My throat is still sore as the remaining lesions and ulcers heal,

but

> it's not nearly as bad as it was. All of that morphine has me in a

> fog, too, but I can deal with that.

>

> Lesson learned: crohns can flare up big time in areas other than

the

> lower gi tract. If this truly fixes it, I'll maintain an 8-week

> remicade cycle. Interestingly, during all of this, my belly and

below

> were just fine. Go figure. Just another adventure in this crazy

disease.

>

> Tom

> PSC 99

>