PSC, pancreatitis and UC

[Guest guest]

Over the last year, my 20 year old son has been diagnosed with PSC,

pancreatitis and UC. Juggling the masses of medicines is a

challenge. From the recent messages, this combination may not be as

unique as I first thought.

Our doctor is now talking " autoimmune disease " After a tough

Christmas, my son's medications have once again changed. He is now

taking urso, prednisone, salofalk and azathioprine (APX).

Is there anyone out there who has been diagnosed with this

combination? I would be curious to hear of your experiences.

(mother of son with UC 12/04, pancreatitis 8/05, psc 8/05)

[Guest guest]

Yes - UC 1977, PSC 2000, with pancreatitis following 2 of 3 ERCPs. UC has

been quiet for most of 30 years on sulfasalazine. I started taking Ursodiol

in 2001, increasing to the high dosages in 2002. I've been asymptomatic

since balloon dilatation and stenting of my CBD in 2001 (followed by

cholecystectomy later that summer). With respect to " autoimmune disease " ,

UC and PSC are thought to be autoimmune diseases. I also have asthma and

have had episodes of eczema, both of which are thought to be autoimmune

diseases.

Arne

54 - UC 9/77 - PSC 4/00

Alive and (mostly) well in Minnesota

-----Original Message-----

From: [mailto: ] On

Behalf Of haywd4

Over the last year, my 20 year old son has been diagnosed with PSC,

pancreatitis and UC. Juggling the masses of medicines is a

challenge. From the recent messages, this combination may not be as

unique as I first thought...

(mother of son with UC 12/04, pancreatitis 8/05, psc 8/05)

[Guest guest]

I was diagnosed with UC and PSC in 1984, and discovered I had

pancreatitis in 1997. However, my docs said it looked like I had had

pancreatitis for about 10 years, according to the amount of damage to

my pancreas. In fact, at the time of discovery we began talking about a

pancreas transplant. They have done lots of work on my pancreas since

then, and I have taken pancreatic enzymes (since diagnosis).

(MO)

[Guest guest]

Hi ,

My 18 year old was diagnosed with both UC and PSC in June 2005. NOt

pancreatitis though. He is currently on prednisone, asacol, ursa and

in the last month the doctors have been trying him on azathioprine

with the intention of getting him off the prednisone. He takes some

supplements also which I learnt from this site to be good so asked his

doctor who OK'ed it. These are fish oil (Carlson's super omega fish

oil), calcium (Oscal ultra)and multivites. The multivite is to make

sure he gets some extra folic acid. I do not know if the folic acid

in the multivite is adequate though or if he needs more but adding on

more medicines for him is a bit of a struggle.

Rita

[Guest guest]

-

First of all I would like to say Hi to everyone. I feel bad that I

haven't been keeping up with the group, but it's hard to do with a busy

schedule (full-time school, part-time x-ray technologist, and a social

life somewhere in there too.) Plus, I've been trying to plan for

graduation this summer, and continued schooling (physiology/pre-

medicine) next fall at the University of Minnesota (hopefully...

waiting for my letter!).

I just wanted to tell you to make sure your son knows he is not

alone, and this disease can be well managed for years, as some have

experienced. Although taking medications, routine procedures, and

frequent doctor visits are not the " norm " for 20 year olds, make sure

he knows that it is possible to do whatever it is he wants to do in

life..

A little about my story.. I'm living in Minnesota, and was diagnosed

with US as a 17 yo, and PSC as a 19 yo. I too take high doses of

URSO, but I take a very low dose of asacol to maintain my UC.

Well, I'm sorry I have to cut it off soo quick, but I've got some

homework, and plans with friends yet tonight. I just wanted to chime

in because I can totally relate to how he's feeling, and thinking.

Feel free to contact me either on yahoo messenger, or yahoo mail. My

address is bhendo11@ yahoo.com.

Take Care Everyone,

Brett

(21, UC & PSC, still doing excellent!)

>

> Over the last year, my 20 year old son has been diagnosed with PSC,

> pancreatitis and UC. Juggling the masses of medicines is a

> challenge. From the recent messages, this combination may not be as

> unique as I first thought.

>

> Our doctor is now talking " autoimmune disease " After a tough

> Christmas, my son's medications have once again changed. He is now

> taking urso, prednisone, salofalk and azathioprine (APX).

>

> Is there anyone out there who has been diagnosed with this

> combination? I would be curious to hear of your experiences.

>

> (mother of son with UC 12/04, pancreatitis 8/05, psc 8/05)

>

[Guest guest]

Brett wrote:

>

> First of all I would like to say Hi to everyone. I feel bad that I

> haven't been keeping up with the group, but it's hard to do with a busy

> schedule (full-time school, part-time x-ray technologist, and a social

> life somewhere in there too.)

Hey! Wait a minute!!! Someone with this stinkin' disease still has a

social life????? How did that happen?? More to the point ... is it

possible to recoup a social life once it's been lost for a few years or

is that dreaming the impossible dream?

:-)

Carolyn B. in SC

[Guest guest]

Re: Re: PSC, pancreatitis and UC

> diana

>

> Make sure D is given with the calcium. Weight lifting or other measured

> stressing of the bones is good. Usually the folic in a multivit. is not

> enough, at least for us UC types. Hope he is responsive to the

> Azathrioprine, if not there are still lots of great options.

>

> Best

> jd, 45

> UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3

> Southern, IL

> krmpotich@...

>

>

>

>

[Guest guest]

Carolyn-

I totally understand where you are coming from! I remain optimistic

and refuse to let this disease rule my life. Although I make slight

modifications due to PSC, I live each day as a new day, and enjoy

life.

Now that being said.. Will there come a day where I am too sick to

have a social life? Maybe.. But I don't want to think of those days,

and pray they never come. I jus wish PSC would go away and leave me

alone. I say PSC-Go Away!

I encourage you to try to remain as active as possible. Don't let

PSC take the wheel! (even though it often is a backseat driver)

-Brett-

> >

> > First of all I would like to say Hi to everyone. I feel bad that

I

> > haven't been keeping up with the group, but it's hard to do with

a busy

> > schedule (full-time school, part-time x-ray technologist, and a

social

> > life somewhere in there too.)

>

>

> Hey! Wait a minute!!! Someone with this stinkin' disease still

has a

> social life????? How did that happen?? More to the point ... is

it

> possible to recoup a social life once it's been lost for a few

years or

> is that dreaming the impossible dream?

>

> :-)

>

> Carolyn B. in SC

>

[Guest guest]

Brett wrote:

> Carolyn-

>

> I totally understand where you are coming from! I remain optimistic

> and refuse to let this disease rule my life. Although I make slight

> modifications due to PSC, I live each day as a new day, and enjoy

> life.

>

> Now that being said.. Will there come a day where I am too sick to

> have a social life? Maybe.. But I don't want to think of those days,

> and pray they never come. I jus wish PSC would go away and leave me

> alone. I say PSC-Go Away!

>

> I encourage you to try to remain as active as possible. Don't let

> PSC take the wheel! (even though it often is a backseat driver)

Dear Brett,

Well, PSC " took the wheel " when it forced me to give up driving more

than 2 years ago. It also took the wheel of my hubby's life because he

is naturally limited by my disabilities (it's kinda tough to go " solo "

for vacations, dinners, theatre, walks when you're half of a couple and

the other half is immobilized by illness).

Let me state, first and foremost, that I do keep a very positive outlook

and take each day as a gift from God. When I wrote the note about

having a social life, I was simply being a bit silly (as MizKit

understood and responded in like fashion!). :-)

I admire you tremendously for being able to be a full-time student,

part-time x-ray tech, AND still maintain a social life, yet I must say

that you really don't understand as you will someday (and I hope it's

many, many years away for you)!! Mind you, I'm not fussing or trying to

put you down .... far from it!!! But, you see, you are 21 years old and

I am 47; you are active and busy (more power to you!) and I am homebound

and struggle to get through each day with my sanity intact. Gee whiz,

I've been sick for longer than you've even been alive!!

I've had Crohn's since about 1981; the PSC was first noticed in 1994

when my gall bladder came out. Due to extreme fatigue I had to stop

working in 1992 ... before we had any clue as to what was the matter. I

went on disability in 1998 only because my drs. urged me to do so. I'd

give just about anything to be able to work again or to study again (I

wasn't able to complete my college degree because of all this illness).

Due to spinal stenosis I must use a walker and can't go very far or

stand longer than a minute (on good days!), and there's only one chair

in the whole house I can comfortably sit in (my leather recliner)!. Due

to central sleep apnea (not obstructive) and poorly controlled asthma, I

must be on oxygen at night. Due to the PSC, I'm nauseous a great deal of

the time, and I'm so horribly fatigued I can barely function; I've been

able to go out to dinner with my hubby only ONCE in over a year and a

half. Due to the hepatic encephalopathy, I had to stop driving 2 years

ago and generally can't figure out what I'm doing or whether I'm coming

or going. I have a great deal of steady constant pain but can't handle

any painkillers. I've not been shopping (except online) or to a beauty

shop in 4 or 5 years. My only social life is when someone drops by to

visit (maybe once or twice a month) or when I call someone on the phone.

Oh, and I swallow 14 pills a day plus 2 doses of lactulose.

These are just the facts of life for me, and for some others in this group.

Do I feel sorry for myself? NO!!!!! (oh, OK, there are moments, but

they are few and far between) I have realized that I still get far more

joy out of life than most folks I know. I have a strong faith in God

who has given me such an incredible sense of peace about this whole

situation, and I have a great sense of humor, as does my hubby, and so

our house is filled with laughter and love. There are millions of

physically healthy people who don't have it half so good!!! As Lou

Gehrig once said, " I consider myself to be the luckiest man (woman) on

the face of the earth! " (And look at the disease he suffered!)

My hubby says I'm coming down a bit heavy on you. That's NOT my

intention here and I do apologize if it hits you that way. I just want

you to realize that there comes a time when you must embrace the facts

of your life, whether you like them or not, and keep thanking God for

the many blessings and joys he gives us unceasingly. There IS life with

PSC, it's just not the life I envisioned when I was 21. :-)

With kind regards,

Carolyn B. in SC

[Guest guest]

Carolyn-

Your Quote:

" I admire you tremendously for being able to be a full-time student,

part-time x-ray tech, AND still maintain a social life, yet I must

say that you really don't understand as you will someday (and I hope

it's many, many years away for you)!! Mind you, I'm not fussing or

trying to put you down .... far from it!!! "

If this day comes... I too hope it's many, many years down the road,

but I'm hopeful I never have to go down that road. That being said,

I think I DO UNDERSTAND!......

Well you are right, and wrong I am only 21, and I am still fairly

healthy. I'm sorry to hear that your illnesses have " taken the

wheel " , but I refuse to loosen my grip.

When I was first diagnosed with PSC, it was almost by accident. The

MRCP was negative, and the only reason I had an ERCP (which dxed my

PSC) was because I had dark urine with elevated alk phos and bili

levels the night before my laparoscopic cholecystectomy, and

mentioned it to my surgeon in the locker room at work. What I'm

tryin to say is that I remain hopeful that by my early diagnosis,

high dose urso, frequent dr. contact, advances in medicine, and

slight lifestyle/diet modifications I will be able to completely

avoid the terrible symptoms that are associated with PSC and UC.

Now that being said.... I am not ignorant. I realize that I do have

a serious liver disease, and it is " slowly progressive " in nature. I

can't ignore this! I will probably hit a few bumps in the road along

the way, but for now I'm going to remain focused on my goals, go to

medical school, and we'll see where I end up.

As a Radiologic Technologist, I work closely with sick people

everyday. I realize how medical problems can control your life

(especially as an UC patient myself.. yikes). I'm sorry that your

medical problems have " taken the wheel " from both you and your

husband. Even though it has a major influence on your social life,

you seem to be in great spirits. You are a strong person as I'm sure

your husband would agree. I respect you for your faith, positive

outlook on life, good humor, and wit.

Working in hospitals, I see some of the worst of the worst when it

comes to medical diseases/conditions. I can totally understand where

you're coming from when you describe your disabilities.

Let me just say.. I hope I didn't come off as being rude, or ignorant

to anyone by what I said. That is not my intention. I just remain

hopeful that there will be a cure someday... Medical research is huge

right now, and progress is being made in many fields. Look at Cystic

Fibrosis for example.. not long ago the prognosis for these children

was not good, and many would die far too young. Today, the prognosis

for these children is Much better and many live normal, productive

lives.

Some day, Drs WILL figure this disease out and the prognosis for PSC

patients will be much more positive.

Well.. I may be dreaming, but lets face it.. medicine has come a long

way in a very short time. This is especially evident in my field

(radiology). PET/CT, Nuclear Medicine, MRI, CT, Digital Radiography,

Mammography/digital mammo, interventional radiography, fluoroscopy,

radiation therapy, bone densitometry, and ultrasound have taken

medicine to the next level and continue to only improve. This is

exciting!

OK, I'm sorry it got so long, but I felt like I had to explain myself

a little bit. I hope that you would agree that I really DO

understand. Although someday I may be in poor health, I refuse to let

it " take the wheel " . I'm drivin this car! .

With respect,

Brett

(21, MN, PSC, UC, high dose Urso/low dose asacol.)

> > Carolyn-

> >

> > I totally understand where you are coming from! I remain

optimistic

> > and refuse to let this disease rule my life. Although I make

slight

> > modifications due to PSC, I live each day as a new day, and enjoy

> > life.

> >

> > Now that being said.. Will there come a day where I am too sick

to

> > have a social life? Maybe.. But I don't want to think of those

days,

> > and pray they never come. I jus wish PSC would go away and leave

me

> > alone. I say PSC-Go Away!

> >

> > I encourage you to try to remain as active as possible. Don't

let

> > PSC take the wheel! (even though it often is a backseat driver)

>

>

>

> Dear Brett,

>

> Well, PSC " took the wheel " when it forced me to give up driving

more

> than 2 years ago. It also took the wheel of my hubby's life

because he

> is naturally limited by my disabilities (it's kinda tough to

go " solo "

> for vacations, dinners, theatre, walks when you're half of a couple

and

> the other half is immobilized by illness).

>

> Let me state, first and foremost, that I do keep a very positive

outlook

> and take each day as a gift from God. When I wrote the note about

> having a social life, I was simply being a bit silly (as MizKit

> understood and responded in like fashion!). :-)

>

> I admire you tremendously for being able to be a full-time student,

> part-time x-ray tech, AND still maintain a social life, yet I must

say

> that you really don't understand as you will someday (and I hope

it's

> many, many years away for you)!! Mind you, I'm not fussing or

trying to

> put you down .... far from it!!! But, you see, you are 21 years

old and

> I am 47; you are active and busy (more power to you!) and I am

homebound

> and struggle to get through each day with my sanity intact. Gee

whiz,

> I've been sick for longer than you've even been alive!!

>

> I've had Crohn's since about 1981; the PSC was first noticed in

1994

> when my gall bladder came out. Due to extreme fatigue I had to stop

> working in 1992 ... before we had any clue as to what was the

matter. I

> went on disability in 1998 only because my drs. urged me to do so.

I'd

> give just about anything to be able to work again or to study again

(I

> wasn't able to complete my college degree because of all this

illness).

> Due to spinal stenosis I must use a walker and can't go very far or

> stand longer than a minute (on good days!), and there's only one

chair

> in the whole house I can comfortably sit in (my leather recliner)!.

Due

> to central sleep apnea (not obstructive) and poorly controlled

asthma, I

> must be on oxygen at night. Due to the PSC, I'm nauseous a great

deal of

> the time, and I'm so horribly fatigued I can barely function; I've

been

> able to go out to dinner with my hubby only ONCE in over a year and

a

> half. Due to the hepatic encephalopathy, I had to stop driving 2

years

> ago and generally can't figure out what I'm doing or whether I'm

coming

> or going. I have a great deal of steady constant pain but can't

handle

> any painkillers. I've not been shopping (except online) or to a

beauty

> shop in 4 or 5 years. My only social life is when someone drops by

to

> visit (maybe once or twice a month) or when I call someone on the

phone.

> Oh, and I swallow 14 pills a day plus 2 doses of lactulose.

>

> These are just the facts of life for me, and for some others in

this group.

>

> Do I feel sorry for myself? NO!!!!! (oh, OK, there are moments,

but

> they are few and far between) I have realized that I still get far

more

> joy out of life than most folks I know. I have a strong faith in

God

> who has given me such an incredible sense of peace about this whole

> situation, and I have a great sense of humor, as does my hubby, and

so

> our house is filled with laughter and love. There are millions of

> physically healthy people who don't have it half so good!!! As Lou

> Gehrig once said, " I consider myself to be the luckiest man (woman)

on

> the face of the earth! " (And look at the disease he suffered!)

>

> My hubby says I'm coming down a bit heavy on you. That's NOT my

> intention here and I do apologize if it hits you that way. I just

want

> you to realize that there comes a time when you must embrace the

facts

> of your life, whether you like them or not, and keep thanking God

for

> the many blessings and joys he gives us unceasingly. There IS life

with

> PSC, it's just not the life I envisioned when I was 21. :-)

>

> With kind regards,

>

> Carolyn B. in SC

>