What if the pain is so bad?

[Guest guest]

My son Shane, in Denver, got out of the hospital yesterday. His pain

gets so bad and that is why he goes in the hospital. They also do a

ERCP but that seems to not help very much anymore.When Shane was

discharged he found out the doctor cut his pain medication in half

and Shane is so upset. Shane wanted to know, is it normal to have

that much pain? He is in the first stage for a liver transplant. Does

he have to weened off most of the pain medicine in order to have a

transplant? He will be going to the liver clinic this week. Up untill

now, he has been mostly seeing his general practisnor.(sp)

Sandy

[Guest guest]

Hi

well I dont know how bad my pain is compared to your sons pain but I have

the same thing it it so dam sore ya just dont know where to put yourself.

I also am on pain medication.

How do you know what stage your son is at did you ask the doc?

Hope all is well with you!

Terri(14)

South Africa

[Guest guest]

It seems to be common to have a lot of uncontrolled pain. But it

should NOT be allowed.

Pain control is key to quality of life. There are meds Shane can

take that will not cause additional harm to his liver.

It is NOT necessary to be off pain meds before transplant. Many pain

meds are available in IV form, so if the doctors are planning ahead

and talking to each other, pre-op and post-op pain control can be

handled smoothly.

Which doctor cut the pain med in half? I would want to sit down and

have a chat with that person. Then call in your hospital's pain

clinic.

This is a real soap-box issue with me. If you have trouble finding a

pain clinic, finding a pain-control specialist, or getting your

doctor to listen, please feel free to e-mail me privately for extra

help. There are solutions.

Also, I don't remember how hold Shane is, but I'm thinking adult.

You are still welcome to join PSCMOMS, another Yahoo group. It's not

a replacement for this group, but a supplement, with more focus on

the caregiver issues.

Good luck,

Pam (mom to Quantell, 13, dx 1996, tx 2001)

[Guest guest]

Sandy,

Pam gave you very good advice. I'm not sure that I agree that extreme pain like you are describing is that common though. We have had several members who have dealt with it and are still dealing with it. Pam knows better than most how to deal with the doctors and hospitals, so I can not add to her advice. My thoughts and prayers are with you though. How far away are you from your son? What is his situation? Does he have a family or live with someone who is his caregiver? I can't imagine dealing with just a GP. A hepatologist is the ideal, but a gastrointerologist with experience in PSC isn't too bad either. How far would he have to travel to see a specialist?

Take care, Cheryl Berg, Idaho 45Married 25 years, 4 children, 2 grchildrenPSC 01, UC 00, Fibromyalgia, hypothyroid,hiatal hernia, ulcer, gall baldder removed '93disability (retired English teacher)

What if the pain is so bad?

My son Shane, in Denver, got out of the hospital yesterday. His pain gets so bad and that is why he goes in the hospital. They also do a ERCP but that seems to not help very much anymore.When Shane was discharged he found out the doctor cut his pain medication in half and Shane is so upset. Shane wanted to know, is it normal to have that much pain? He is in the first stage for a liver transplant. Does he have to weened off most of the pain medicine in order to have a transplant? He will be going to the liver clinic this week. Up untill now, he has been mostly seeing his general practisnor.(sp)Sandy

[Guest guest]

> My son Shane, in Denver, got out of the hospital yesterday. His

pain

> gets so bad and that is why he goes in the hospital. They also do a

> ERCP but that seems to not help very much anymore.When Shane was

> discharged he found out the doctor cut his pain medication in half

> and Shane is so upset. Shane wanted to know, is it normal to have

> that much pain? He is in the first stage for a liver transplant.

Does

> he have to weened off most of the pain medicine in order to have a

> transplant? He will be going to the liver clinic this week. Up

untill

> now, he has been mostly seeing his general practisnor.(sp)

> Sandy

My daughter, 17 years old, sick with inflammatory bowel disease and

liver disease since she was two, diagnosed with PSC about five years

ago, is having a terrible time with pain and managing pain meds. UNC

is questionning keeping her on the active list because of this

problem. Ever since she was given Remicade four years ago (which she

is allergic to),she has had lower back pain almost all the time and

especially with her periods. But, UNC (Chapel Hill) says she is

making it up. Last month, she had a 4 cm ovarian cyst. Right now,

the Crohn's disease is acting up and she is bleeding, plus she has

had her period three times in four weeks. UNC wants us to put her in

a rehab program but what good will that do if she is still in pain

and have to put her on more meds. Can anybody give me suggestions?