New here - husband has PSC & UProctitis - I have lots of questions.

[Guest guest]

Nichole

Hello.

Glad you took the time to bring the group up to speed with what has been

happening. Sorry it is so much.

In terms of a new GI DOC/ hospital, I would encourage you to get to the docs

and hospitals that see these diseases regularly. I once had a surgeon tell

me he had only seen one other case of UC in the three years since he had

last saw me for a scope. It was here that I gained an appriciation for how

specialized medicine has become, and began seeking out those who practiced

daily in the areas that I have problems in.. I'm sure folks on this site

from your state might help with names of Docs. Many times docs can help with

this too, particularly if you have a Primary doc you trust.

While opinoin varies on what is considered an appropriate length between

scopes, given he has had a large mass removed, and has PSC (which also

increases the risk of colon cancer, yeah!) I'd think annual was a good

interval. Multiple biopsies is extremely important. One reason is that UC

tends to not always manifest cancer in the typical ways (polyps, etc.) and

can be devilishly hard to identify, so more biopies the better. Did anyone

rule out familial polyposis (sp?)? I reference it due to the line about

having many small polyps, and because left undiagnosed is not good at all.

Before I had my colon removed, they were taking 10 biopsies spaced

throughout the organ, and anything that look suspicious.

The difinitive test for PSC is a ERCP and liver biopsy. Liver panel (blood)

tests, and others are helpful, and help Docs rule out other more common

problems. PSC like UC is reasonably rare.

Medications for PSC is a who different ballgame than UC. Basically it is

symptomatic management. Some Docs give Actigal (URSO), but it probably does

nothing in the long term course of the disease. National studies are

underway to see if high doses of this drug can change outcome (for example

slow the onset of end stage liver diease, etc., no one is talking cure as

yet, other than transplant)

I will yield to others far more experienced than I to help you with the

urgency question of PSC in terms of what is a crisis vs. needing routine

care.

In terms of rectal bleeding, I have mostly been schooled that this is never

to be considered normal. If you loose large amounts all at once (like a

loose stool only mostly blood) this calls for an ER visit. If on the other

hand, it is a few drops, bloody tissue, it should be attended to urgently

(not ER, but make the appointment with the Doc., and let the scheduler know

why you are calling to schedule, as they will likly want to see you in days

not weeks.

In terms of the overwhelming thing, it is ok to be overwhelmed. It is a sign

of GOOD mental health. After all you have just had major life changing

events introduced into you life. To be relaxed about this would be a sign of

either insanity, or stupidity. I know the temptation is to move into double

over drive to think your way out of the problem, try to resist this urge.

There is time to make sense of it all, and yes, there will be a tomorrow.

Remember PSC runs a S l o w course. The world will be a different place

concerning PSC in 5, 10 & 15 years, and most of us can expect to have this

amount of time. I can say this because I was just diagnosed in October!

Sounds like to me you are both taking very prudent steps.

In terms of support, don't forget family, friends, church, etc. Also you

might check to see if your community has a behavioral health organization.

They are usually not-for-profits, and can be a low cost lotta help.

When you begin to get back on track, don't just drop the insurance thing.

There are companies who make there profit off of insuring high risk cases.

You may also talk to your HR departments and see if the company you work for

is willing to sponser no decline disability (life, etc, even if you have to

pay the entire premium), it is a foot in the door, particularly if it is

" portable " .

Please post / write as you can

Be extra good to yourselves this holiday season

Best Holiday Wishes

jd

UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04

ston City IL

krmpotich@...

New here - husband has PSC & UProctitis - I have lots

of questions.

>

>

> Now for the questions?

>

> 1) Should we get a new GI doctor. His doctor really seems to care

> about him but we would rather use one of the hosptiatls in

> Charlotte? If so, how should we choose one?

>

> 2) Should my husband have an annual colonoscopy with multiple

> biopsies to check for cancer?

>

> 3) What tests should my husband be having for the PSC, how often, and

> what medications should he be taking considering his symptoms.

>

> 4) When should he see a doctor based on symptoms and how urgent

> should these visits be and what doctor should he see (always his GI

> doctor?) When he complains about the bleeding I don't know what he

> needs to do or what to tell him?

>

> Other - I have had a really difficult time with all of this and we

> can't afford to see a counselor right now. My husband only has life

> insurance through his work and through my work and when we tried to

> buy a life insurance policy for him a couple months ago his

> application was rejected. We have a daughter who will be 3 in March

> and becuase of the PSC and life insurance we agreed not to have any

> more children even though I wanted to have more (he never really

> wanted more and now definitely doesn't). My paternal grandfather who

> raised me and his mother both died due to non-alcoholoic cirosis of

> the liver. My father's brother died very young (50s) with non-

> alcoholic cirosis of the liver. My mother's sister died very young

> (in 2004) with non-alcoholic cirosis of the liver (she also had

> Chron's disease). My father's other brother and his sister both have

> fatty liver. Nobody in my husband's family has ever had liver

> problems or UC. I am worried about my daughter's risk of having

> liver problems and don't know when she should have testing done and

> what kind of testhing she should have. When I found out that PSC

> affects the liver it hit me like a ton of bricks after I have lost so

> many of my loved one's to liver failure. I have never lost a loved

> one to cancer, or heart attachs, only to old age or liver failure and

> I am scared to death. I cry most days since we found out. I feel so

> helpless and out of control. I usually try to plan everything. I

> have decided to pursue a graduate degree to try and improve my

> earning potential in case my husband dies and I have to raise our

> daughter alone without any life insurance. My job is not very secure

> and I would have to take a large pay cut and/or move and/or travel

> most of the time if I had to find a new job. My husband's job is

> secure unless he becomes disabled. If he becomes disabled I don't

> know what happens to his life insurance.

>

>

>

>

>

>

>

>

[Guest guest]

Hi Nichole,

I'm glad you found this group, but so sorry it was necessary. My

husband, Rick, was diagnosed in June of this year with auto immune

pancreatitis and PSC---6 months later, things seem far more positive

than they were after his diagnosis. I'd like to encourage you to,

first and foremost, to trust yourself, Nichole---you know your

husband better than any of the doctors.

What I mean is this--if you feel that your husband's care should be

handled by a different doctor, then, by all means, switch his care

to the best in your area. Interview the doctor and ask for his/her

track record with ERCP's and how many other people with PSC they

manage. Rick has a team of doctors working on his case; we did

switch GI docs in the beginning as I recognized that the GI knew

very little about PSC and was not interested in learning more. We

have a GI doc,rheumatologist, immunologist, primary doctor and

naturopath all part of his team; once he has a liver biopsy, we'll

have a liver doc as well. You'll want to find a hepatic specialist

to assist you in your husband's care, too.

You'll also want to ask the doctor about a plan of care; what do we

do for bleeding, fevers, pain? What symptoms does the doctor want

reported? What constitutes an emergency? What do you want done in

the ER if we have to go there? Nichole, also keep records of all of

your husband's procedures and lab tests and take these with you to

every doctor appointment. I know this sounds overwhelming, but it

has enabled all the specialists to know what Rick has had done. We

also take this information with us when we travel.

Nichole, my husband worries about cancer more than anything. he was

also told that he probably had cancer, then this was, thank

goodness, retracted. One of the things I am going to ask his doctor

the next time we see him is about cancer; are there any blood tests

that can be done to check for cancers, etc. I have also been

researching the internet for information about this. I would

encourage you to ask your doctor about cancer screening and testing.

Medication; many people in this group take a bile thinning

medication called " Ursodiol " or " Actigall. " You'll find many great

entries that speak to various dosages. My husband takes a total of

1200 mg daily; from what I've been reading (in this group) he may

not be taking a high enough dose, so we will also ask about this at

next visit. Rick also takes Flaxseed Oil (1000mg with each meal),

Omega 3 (850mg w/each meal), Quercetin and Milk Thistle with each

meal; some of these were prescribed by his GI doc, some by his

naturopath. he takes other things as well, but they are not all

related to PSC.

Nichole, it already sounds as if you are advocating for your husband

and your family. I do remember being terrified and overwhelmed,

crying (sometimes alone) for weeks--I still do, once in awhile.

Crying is cleansing and can be a good thing. But Rick and I decided

early on that we were " going to war against PSC; " we could either

crumble or rise above it. We have chosen an interesting partnership;

I do all of the research, as he cannot bring himself to read

the " bad news " about PSC. I bring to him ideas and suggestions,

butu he presents these to his doctors. He often feels that calling

the doctor or nurse to complain of his latest problems will only

bring more tests, etc....sometimes this is true, but we have also

had experiences where being proactive has prevented bigger

problems. Our husbands sound like similar---hard working guys, not

used to being " sick. " I would encourage both of you to get back into

your routine, seek the best care for your husband possible, educate

yourself (without believing everything you see/hear/read from the

internet); participating in this group is such a positive for me and

I hope for you, as well. I, too, worry about finances, our boys,

our future, but, again, we choose to view this as " war " and refuse

to dwell on the negatives that may never happen. Our new doctor is

positive and uplifting; he manages 8 others with PSC and says that

they are all doing well and no one has had a liver transplant (or

even close, as he puts it). PSC does have a varible prognosis and

course and it is hard to predict who will do well-- but we are

anticipating many more years together, despite this diagnosis.

Nichole, you sound strong, curious and compassionate---your family

needs you to be strong where you can be, and you need to encourage

your husband to be strong where he can be. For my husband, going to

work is theraputic and is his way of remaining strong. When he

can't work, he exercises and putters around the house. You are still

a wife and mother, and he remains a husband and father---you are a

team---PSC cannot take this from you! If you cannot afford

counseling,and desire it, you may want to check with the Social

Worker at your local hospital or with your community mental health

office regarding free/reduced cost counseling. Working with someone

who understands chronic illness and how it impacts a family is best.

You have many here who will encourage you and answer questions as we

can. There is a link, put together by and Judy (very

active members of this group); look in the " messages " portion of

this website and see if you can find it---I'd try to find it for

you, but it will wipe out this message! I'm sure others will direct

you to it --it is a comprehensive bank of PSC and related articles.

There has also been recent discussion about life insurance here as

well. We were also in the process of trying to get life insurance

for my husband (like yours, he has it as long as he works), so you

may want to read these postings.

Above all, know that we are thinking of you, your husband and family.

You are not alone.

Tammy, wife of Rick, 48yr, dx w/AIP & PSC 6/04

- In , " nichole_rowland "

<nichole_rowland@y...> wrote:

>

> Hi,

>

> My name is Nichole. My husband, , is 28 and he was

diagnosed

> with PSC and Ulcerative Proctiits in late July / early August. >

>>

> >> My husband's GI doctor said that he could do an ERCP but he

really

> scared us about the risk to the pancreas. He indicated that the

risk

> to the pancreas was a lot higher than what I have read elsewhere

> making me think he has more complications doing an ERCP than most

GI

> doctors.

> > 1) Should we get a new GI doctor. His doctor really seems to

care

> about him but we would rather use one of the hosptiatls in

> Charlotte? If so, how should we choose one?

>

> 2) Should my husband have an annual colonoscopy with multiple

> biopsies to check for cancer?

>

> 3) What tests should my husband be having for the PSC, how often,

and

> what medications should he be taking considering his symptoms.

>

> 4) When should he see a doctor based on symptoms and how urgent

> should these visits be and what doctor should he see (always his

GI

> doctor?) When he complains about the bleeding I don't know what

he

> needs to do or what to tell him?

>

> Other - I have had a really difficult time with all of this and we

> can't afford to see a counselor right now. My husband only has

life

> insurance through his work and through my work and when we tried

to

> buy a life insurance policy for him a couple months ago his

> application was rejected. We have a daughter who will be 3 in

March

> and becuase of the PSC and life insurance we agreed not to have

any

> more children even though I wanted to have more > I am scared to

death. I cry most days since we found out.

[Guest guest]

I want to thank everyone who has replied to my post. For some reason

I have just been really down today.

I have put together a notebook based on the advice here and plan to

get copies of my husbands test results to put in the notebook.

I had never even heard the term heptologist but we will try to find a

good one. My husband's GI doctor has not suggested that we see

anyone else for the PSC but I would feel better if we did. After

all, the colorectal surgeon said that he felt certain that a general

surgeon would have done a more radical procedure than what he did and

he thought my husband was better off having a less invasive procedure.

We will take the advice of interviewing the doctors to see who has

good track records regarding the ERCPs.

I also really appreciate the list of symptoms that require

attention. I really want my husband to be seen before his Feb appt

about the bleeding. He says it has not been a lot it has just been

frequent.

My husband had pnemonia last year before we knew about any of this

and his Primary care doctor thought it was odd that he would get

pnemonia at his age. Does PSC make him more likely to get infections

like that and does that mean that he should be getting flu and

pnemonia shots each year?

Thanks again for you support and suggestions.

[Guest guest]

Dear Nichole;

Welcome to the group. The address for the web site with links to PSC

information that Tammy (wife of Rick) referred to is:

http://www.psc-literature.org/

I might suggest browsing through the " www Resources " links first,

before delving in to the " Scientific Literature " . It has links to

about 19,800 abstracts .... not something that one could read all at

once!

Although others have responded to your questions, I thought I would

add my perspective as a PSCer care-giver:

1) Should we get a new GI doctor.

As others have mentioned it might be good to have your husband seen

by a hepatologist who is familiar with PSC and its complications.

2) Should my husband have an annual colonoscopy with multiple

biopsies to check for cancer?

Yes, I think it is a good idea for your husband to have an annual

colonscopy. When my son was diagnosed with PSC it was immediately

suggested that he have a colonoscopy, and in doing so they found

ulcerative colitis, even though he had no symptoms of this. They put

him on asacol and suggested that he have an annual colonoscopy with

biopsies thereafter. His second colonscopy showed much improvement in

the appearance of his bowel, and this " intervention " may well save

him for developing colon cancer.

3) What tests should my husband be having for the PSC, how often,

what medications should he be taking considering his symptoms.

My son has blood tests every 3 months. They look for ALT, AST,

alkaline phosphatase, bilirubin and certain cancer markers (CEA and

CA19-9). Following his first colononscopy his platelet levels dropped

dramatically, and so we requested complete blood count tests until we

saw his platelets recover. My son takes high-dose ursodiol (~25

mg/kg/day), and also rifampin (2 x 150 mg per day) to control

itching. He also takes a low iron vitamin supplement and extra folic

acid.

4) When should he see a doctor based on symptoms and how urgent

should these visits be and what doctor should he see (always his

GI doctor?) When he complains about the bleeding I don't know what

he needs to do or what to tell him?

Our son has had a check up every 6 months since diagnosis, but last

time he was told that since he is stable and not experiencing any

symptoms, that he can wait for 12 months for the next appointment. Of

course, if symptoms develop then he should be seen immediately. It

would be good to get your husband's bleeding under control.

It is really difficult emotionally at diagnosis time, and I really

feel for you. But hang in there, it does get better. It helps to talk

about it.

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Hello again

My vote would be to get all the medical hello you can like flu vaccinations

etc. When the body is busy at war with itself, which is sort of what an

autoimmune disease is, I think it is more likely to become sick from

opportunistic diseases. My Docs always have encouraged these shots. After

nearly 30 years of a bad colon before I had my " bionic bowel " installed, I

found that infections both viral and bactirial seemed to heal 2-3 time

slower than most anyone else (ie my " 24 " hr bug is 72 hr. minimum) Remember

if we didn't have a kink in the immune system anyway, we all wouldn't be on

this board filling these pages! I don't know about your hubby, but I hate

the Flu, partly because it seemed to also have the knack of sturring up the

disease in remission to full furry, which would plauge me for weeks or

months after the " flu " was gone at last!

P.S. a lot of us were told by our GI gastro to begin " developing a

relationship " with a hepatologist. Anything Hepa = Liver. These guys are

internal medicine Docs who have done additional study & boards in

gastroenterology and have an emphasis and sometime limit their practice to

" Hepatology Patients " . I wasn't looking for another " relationship " ,

particularly medical, but opps here we are. Oppppps!

Best Holiday Wishes

jd

UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04

ston City IL

krmpotich@...

Re: New here - husband has PSC & UProctitis - I have

lots of questions.

>

>

> I want to thank everyone who has replied to my post. For some reason

> I have just been really down today.

>

> I have put together a notebook based on the advice here and plan to

> get copies of my husbands test results to put in the notebook.

>

> I had never even heard the term heptologist but we will try to find a

> good one. My husband's GI doctor has not suggested that we see

> anyone else for the PSC but I would feel better if we did. After

> all, the colorectal surgeon said that he felt certain that a general

> surgeon would have done a more radical procedure than what he did and

> he thought my husband was better off having a less invasive procedure.

>

> We will take the advice of interviewing the doctors to see who has

> good track records regarding the ERCPs.

>

> I also really appreciate the list of symptoms that require

> attention. I really want my husband to be seen before his Feb appt

> about the bleeding. He says it has not been a lot it has just been

> frequent.

>

> My husband had pnemonia last year before we knew about any of this

> and his Primary care doctor thought it was odd that he would get

> pnemonia at his age. Does PSC make him more likely to get infections

> like that and does that mean that he should be getting flu and

> pnemonia shots each year?

>

> Thanks again for you support and suggestions.

>

>

>

>

>

>

>

>