More Painful Than Usual

[Guest guest]

My URQ pain has been pretty bad the past couple days. It started

hurting worse Tuesday night and yesterday and today it's just bad. I

have darvocet to take as needed but it's not helping.

I'm hesitant to call my hepa because when my husband asked him about

the pain the hepa said that psc shouldn't cause pain. Well it does.

So I'm not sure what to do. It hurts. I feel like just laying in bed

but can't, the kids won't let me.

I have no fever or anything. No other symptoms of cholangitis so I

don't think that's it. Do I just put up with it or call my hepa?

(I hate liver diseases!!!)

24 from NE

PSC 8/07

PBC 10/06 (probably)

[Guest guest]

Just adding.....I take 250mg of urso 3x a day and have been drinking

tons of water and it's not helping. I know those are usually two

things that are suggested right away. Thanks guys.

[Guest guest]

Do you still have your gallbladder? My first symptom of PSC was pain

from gallstones (the gallstones were secondary to the PSC apparently).

Even if you've had your gallbladder out PSC can cause blockages that

result in pain. My Hep said that most PSC pain was from blockages.

I'd call your hep, and let him know about the pain. If he knows much of

anything, he'll know that PSC can result in pain even if it's not

specifically the PSC directly causing it.

athan

[Guest guest]

My gallbladder was removed January 2006.

I will call the doc and talk to him. He's been a hepa for 35 years so

hopefully he'll get it.

[Guest guest]

Wow ; my daughter experiences the same type of pain on and off; ususally months in between attacks; she has gone to the ER where they absolutely have no clue of what PSC is or how to treat her pain. She has started to meditate herself through these episodes. We think it is bile sludge pressing forwardt through the fibrotic ducts and it does pass usually within 8-12 hours; she does work at her office through the pain and care for her 2 small children but it is not easy; she gets very pale and fatigued with the pain and does not think any pain med helps (those that can be bought over the counter anyway).....-----Original Message-----From: [mailto: ]On Behalf Of jmhette2Sent: Thursday, October 04, 2007 9:21 AMTo: Subject: More Painful Than UsualMy URQ pain has been pretty bad the past couple days. It started hurting worse Tuesday night and yesterday and today it's just bad. I have darvocet to take as needed but it's not helping. I'm hesitant to call my hepa because when my husband asked him about the pain the hepa said that psc shouldn't cause pain. Well it does. So I'm not sure what to do. It hurts. I feel like just laying in bed but can't, the kids won't let me. I have no fever or anything. No other symptoms of cholangitis so I don't think that's it. Do I just put up with it or call my hepa? (I hate liver diseases!!!)24 from NEPSC 8/07PBC 10/06 (probably)The contents of this electronic mail message and any attachments are confidential, possibly privileged and intended for the addressee(s) only. Only the addressee(s) may read, disseminate, retain or otherwise use this message. If received in error, please immediately inform the sender and then delete this message without disclosing its contents to anyone.

[Guest guest]

FYI, Currently I take 900 mg (600 am/ 300 pm) of Urso....was taking 1200 (600/600) and they even discussed 1500 when I was hospitalized. I reduced myself to 900mg after my surgery (bile started passing through on its own), and things have been great. Urso (not sure why) but it stopped all my UC symptoms, none of the UC medications even came close. jmhette2 wrote: Just adding.....I take 250mg of urso 3x a

day and have been drinking tons of water and it's not helping. I know those are usually two things that are suggested right away. Thanks guys.

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[Guest guest]

, When I am having pain and it isn't cholangitis it has been caused by bile stones in my bile ducts. My hep told me I would probably experience pain from this periodically and prescribed hydrocodone which does the trick. Of course, too big a dose just makes me want to sleep but I've discovered by cutting the pill in half I get pain relief and don't feel drowsy. Is your hep at Univ. of Neb? I just have trouble understanding how a doctor can tell you that your psc (liver) doesn't cause any pain. I am amazed by how you are managing with 4 young children. When I was initially diagnosed I had 5 boys ages 3 1/2 - 14 and thought it was difficult. Now with the boys mostly grown and pretty self sufficient it is much easier and compared to you my life is a walk in the park. Anyway, just wanted you to know how amazing you are. Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, listed 9/18/07married 28 years , 5 sons, 2 daughters in law, 1 granddaughter born 6/06 and 2 golden retrievers

[Guest guest]

, I have had the exact same situation with my dr. I kept telling him my RUQ hurt. He just would respond with a well it shouldn't hurt, psc doesn't hurt. I would come home and tell my husband that he says it shouldn't hurt. Finally, my husband went to my last appt with me and asked about my pain. The dr. started his well it shouldn't hurt speech and my hubby got mad. He's a pretty mild mannered guy so it was kind of funny watching him get fired up and tell the dr. that I wasn't making things up. So, your not the only one that's been told you just don't hurt. My solution to the "well it doesn't hurt problem" isn't the best but its working for me. I see a pain management dr. I was referred to him by my dr. when I had a couple bouts of ERCP induced pancreatitis. I know a pain dr. sounds like overkill but I needed

something to help out so I could function. When the stupid pain in my side was keeping me awake at night, I decided enough was enough and went back to the pain dr. He never ignores me when I say my side hurts. I'm probably the easiest case he has. I just try to be careful with him because I don't want to be over medicated. Darcy I'm hesitant to call my hepa because when my husband asked him about the pain the hepa said that psc shouldn't cause pain.

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[Guest guest]

I see Dr Sorrell at UNMC in Omaha. I left a message so we'll see what

he says. Something's gotta give....this sucks. I called and made an

appointment with a pain management doctor. He can't get me in until

October 29th but I hope he can help. And he doesn't prescribe meds so

I'm anxious to see what he does do. I'll share any good ideas of

course.

Thanks guys. I'm glad that you all at least know what's going on. My

husband is working out of state right now so I can complain to him but

I'm sure he's tired of it, lol.

[Guest guest]

Mellisa,

You can add me to the list. I also was told that I

shouldn't have left side pain. " Well the liver isn't

on the left side. " " Most people that have trouble have

it on the right side. "

This was coming from the Medical Director of the

Transplant department.

He also prescribed me Darvoset. I was having so many

problems that I went through 180 capsules in about 6

months. I agree that it is no fun and hate being

stoned out of my gourd all the time. My sales at work

dropped coincidental and I just wasn't fun to be

around. Crabby was not even a good description. I was

mean. Taking those things is depressing and I do

everything I can to avoid it.

Luckily for me the last 2 ERCP's went really well and

I have had some relief from the side pain, which now

does radiate from both left and right sides.

Occasional flare ups do happpen. And they are very

sharp, but I will take it in comparison with the never

ending dull ache/sharp combo that you never get a

break from.

The pain is one of the main reasons they took my gall

bladder out in 2002.

They can drop you to your knees and make you cry out

in pain uncontrollably. Been there done that. My wife

can see that it is uncontrollable and told the doctor

of her concerns.

Holding my 11 month baby is my main concern, it's

scary. I had to hand off to my father-in-law at a

kid's volleyball game once. I am also worried about

stranger's reaction to this process which is probable.

What do you say? " Sorry, just my liver acting up

again. " Headed to the truck to get another pink devil.

You are not alone. This is not just in your head. It's

real and I hope/pray your's will get better.

in Minnesota

PSC 2006, Factor V Leiden

________________________________________________________________________________\

____

Pinpoint customers who are looking for what you sell.

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[Guest guest]

The only way we discovered Tyler's (age 9) PSC last year was thru our persistence. They kept saying the pain was related to UC and we were furious. Tyler would sit in the bathtub with the hose on his abdomen for hours. He was in severe pain. How can you not be in pain if acids are backing up???? anyway, we saw a new team of doctors at Children's Memorial in Chicago and the division head for hepatology immediately started him on Urso even without confirmation of PSC. And, guess what within a week, his pain was relieved. LAter he was diagnosed but has not had this pain since as he remains on Urso.

We all know our own bodies and our children's , so if we feel something is wrong , fight for answers...

Ostos

Darcy Melzer

Darcy Melzer

Sent by:

10/04/2007 11:24 AM

Please respond to

To

cc

Subject

Re: More Painful Than Usual

,

I have had the exact same situation with my dr. I kept telling him my RUQ hurt. He just would respond with a well it shouldn't hurt, psc doesn't hurt. I would come home and tell my husband that he says it shouldn't hurt. Finally, my husband went to my last appt with me and asked about my pain. The dr. started his well it shouldn't hurt speech and my hubby got mad. He's a pretty mild mannered guy so it was kind of funny watching him get fired up and tell the dr. that I wasn't making things up. So, your not the only one that's been told you just don't hurt.

My solution to the " well it doesn't hurt problem " isn't the best but its working for me. I see a pain management dr. I was referred to him by my dr. when I had a couple bouts of ERCP induced pancreatitis. I know a pain dr. sounds like overkill but I needed something to help out so I could function. When the stupid pain in my side was keeping me awake at night, I decided enough was enough and went back to the pain dr. He never ignores me when I say my side hurts. I'm probably the easiest case he has. I just try to be careful with him because I don't want to be over medicated.

Darcy

I'm hesitant to call my hepa because when my husband asked him about

the pain the hepa said that psc shouldn't cause pain.

Moody friends. Drama queens. Your life? Nope! - their life, your story.

Play Sims Stories at Yahoo! Games.