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

[Guest guest]

Hi,

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

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

want to apologize in advance for the length of this message but I

want to describe everything and ask for advice.

My husband grew up poor and he started drinking early but stopped

drinking when he was about 22.

Before we were married in 2001, he had not had a physical in many

years, he couldn't remember the last time he had a physical. I

insisted that he have a physical and they found: high blood pressure,

high cholesterol, and elevated liver enzymes. They monitored his

liver enzymes using blood work, ultrasound, and eventually a liver

biopsy. They said he has fatty liver.

My husband decided this year that he wanted to joing the Army

Reserves, but he knew he had rectal bleeding that had been going on

since he was in high school but had gotten worse. He was certain

this bleeding was due to hemroids so he thought he would get them

taken care of so he could join the reserves.

In July he had a flexible sigmoidoscopy scheduled (the first one he

ever had). The doctor said during the procedure that he had a large

polyp and would need to have a colonoscopy that they scheduled for

the same week. After the colonoscopy the doctor said that the mass

was too large for him to remove that my husband would need to have

surgery. This GI doctor is in Gastonia, NC and he was going to send

my husbnand to a general surgeon in Gastonia to have the surgery but

we said we wanted him to see a colorectal surgeon for the procedure.

(We had to find a colorectal surgeon ourselves.) The GI doctor took

biopsies of the mass (but nowhere else) and said that he thought it

was cancer, that he would be suprised if it wasn't cancer. While

waiting to see the colorectal surgeon (the next week) his GI doctor

ordered an abdominal MRI. On that MRI (they eventually did MRCP and

CT scans) they found an enlarged lymph node near his liver (in the

hepatoduodenal ligament) and some small/tiny pulmonary nodules noted

bilaterally measuring up to 3mm in diameter and multiple areas of

abnoral stricturing within the intrahepatic biliary ductal system.

(There was diffuse stenosis throughout the right main biliary ductal

system extendingd into the secondary branchees. Similarly, there was

abnormal stricturing withing the left main bile duct extending into

the secondary branches. There was a focal stricture of the common

hapatic duct.) A common hepatic duct stricture was noted as well.

(Note: 3 months later he had another set of films (MRCP) that they

said confirmed a diagnosis of PSC). His GI doctor got the results of

his biopsy and said that it was negative for cancer (it was

inflamatory tissue) but and he was very suprised because it looked

like cancer to him.

Note: After we got the first biopsy results and before the surgery I

asked his colorectal surgeon if he thought it could be a large

pseudopolyp and he said that he doubted that.

The colorectal surgeon scheduled him for outpatient surgery and it

took many hours to do the surgery. After the surgery the surgeon

said that he had to call one of his collegues in to assist. He said

that once he got in there he could see why our GI doctor said it

looked like cancer. He said they did several immediate biopsies

during the procedure and they all came back as inflamatory tissue

that they would send the entire thing in for a full pathology

report. He said in addition to the large mass that basically went

all the way around the rectal canal, that my husband had lots of

other tiny polyps in his rectum. He said after the surgery that

based on all of the results he thought it probably was a very large

pseudopolyp and that my husband probably had UC. His GI doctor said

that since it was just in the rectal area that it was called

Ulcerative Proctitis instead of UC but that it might turn into UC.

The pulmonologist said after a 3 month repeat scan that the nodules

were most likely inflamatory tissue.

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.

My husband doesn't like to talk about his symptoms. He has had no

weight loss (he has actually gained weight). He has been taking

Advair for his lungs. He has been using some enemas with anti-

inflamatory medicine in them. He has not been taking anything for

the PSC. My husband says that he feels tired all the time and he

usually takes a nap after work. He has not had any jaundice or

itching. He has been having a lot of rectal bleeding with BM's.

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]

Nichole,

You will undoubtedly be receiving a lot of emails but I thought I would put in my 2 cents. You need to find a a liver specialist (Hepatologist), not just a GI. I get the sense as I see more doctors that they are human being likes everyone else. We think because they are doctors, they must know everything about every potential disease. This is not true and I get the sense that your GI is in over his head. I know Gastonia is a small town and you should look in Charlotte for someone who has more experience with PSC. If Charlotte doesn't have the answer and you are able, find a specialist somewhere else.

I think you are upset because he is dealing with a variety of complications that aren't necessarily related to PSC. I think if you can get the other problems behind you, then he can have an ERCP and figure out for sure that he has PSC. Also, a liver biopsy will tell you how far along he is toward Cirrosis.

I know it is hard for you to put your family history aside but as you know, that doesn't mean he is any worse off than he otherwise would be. You really know very little about the condition of his liver at this point and a new, more experienced doctor will help give you more information. Knowing better where he is at will help you through the pain and fear that is gripping you now.

Your husband needs you to be strong and supportive so make sure he goes to a new doctor and learns more about what is going on.

in Cleveland, PSC 10/04

nichole_rowland wrote:

Hi,My name is Nichole. My husband, , is 28 and he was diagnosed with PSC and Ulcerative Proctiits in late July / early August. I want to apologize in advance for the length of this message but I want to describe everything and ask for advice.My husband grew up poor and he started drinking early but stopped drinking when he was about 22.Before we were married in 2001, he had not had a physical in many years, he couldn't remember the last time he had a physical. I insisted that he have a physical and they found: high blood pressure, high cholesterol, and elevated liver enzymes. They monitored his liver enzymes using blood work, ultrasound, and eventually a liver biopsy. They said he has fatty liver.My husband decided this year that he wanted to joing the Army Reserves, but he knew he had rectal

bleeding that had been going on since he was in high school but had gotten worse. He was certain this bleeding was due to hemroids so he thought he would get them taken care of so he could join the reserves. In July he had a flexible sigmoidoscopy scheduled (the first one he ever had). The doctor said during the procedure that he had a large polyp and would need to have a colonoscopy that they scheduled for the same week. After the colonoscopy the doctor said that the mass was too large for him to remove that my husband would need to have surgery. This GI doctor is in Gastonia, NC and he was going to send my husbnand to a general surgeon in Gastonia to have the surgery but we said we wanted him to see a colorectal surgeon for the procedure. (We had to find a colorectal surgeon ourselves.) The GI doctor took biopsies of the mass (but nowhere else) and said that he thought it was cancer, that he would be suprised if it wasn't

cancer. While waiting to see the colorectal surgeon (the next week) his GI doctor ordered an abdominal MRI. On that MRI (they eventually did MRCP and CT scans) they found an enlarged lymph node near his liver (in the hepatoduodenal ligament) and some small/tiny pulmonary nodules noted bilaterally measuring up to 3mm in diameter and multiple areas of abnoral stricturing within the intrahepatic biliary ductal system.(There was diffuse stenosis throughout the right main biliary ductal system extendingd into the secondary branchees. Similarly, there was abnormal stricturing withing the left main bile duct extending into the secondary branches. There was a focal stricture of the common hapatic duct.) A common hepatic duct stricture was noted as well. (Note: 3 months later he had another set of films (MRCP) that they said confirmed a diagnosis of PSC). His GI doctor got the results of his biopsy and said that it was negative for

cancer (it was inflamatory tissue) but and he was very suprised because it looked like cancer to him.Note: After we got the first biopsy results and before the surgery I asked his colorectal surgeon if he thought it could be a large pseudopolyp and he said that he doubted that.The colorectal surgeon scheduled him for outpatient surgery and it took many hours to do the surgery. After the surgery the surgeon said that he had to call one of his collegues in to assist. He said that once he got in there he could see why our GI doctor said it looked like cancer. He said they did several immediate biopsies during the procedure and they all came back as inflamatory tissue that they would send the entire thing in for a full pathology report. He said in addition to the large mass that basically went all the way around the rectal canal, that my husband had lots of other tiny polyps in his rectum. He said after the surgery that

based on all of the results he thought it probably was a very large pseudopolyp and that my husband probably had UC. His GI doctor said that since it was just in the rectal area that it was called Ulcerative Proctitis instead of UC but that it might turn into UC.The pulmonologist said after a 3 month repeat scan that the nodules were most likely inflamatory tissue.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.My husband doesn't like to talk about his symptoms. He has had no weight loss (he has actually gained weight). He has been taking Advair for his lungs. He has been using some enemas with anti-inflamatory medicine in them. He has not been taking anything for the PSC. My

husband says that he feels tired all the time and he usually takes a nap after work. He has not had any jaundice or itching. He has been having a lot of rectal bleeding with BM's.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 agree strongly with this point; anyting we can do to minimize

exposure to disease is important. This doesn't mean to live in

a " glass bubble " but it is important to resuce your husbands risk of

infection. Frequent handwashing, sneezing into the crook of your

elbow (I work in a Children's Hospital and we teach all of our kids

this), use of hand sanitaizer, etc. My mom has several autoimmune

disorders and has followed this advice for years, staying relativly

healthy. I even clean my doorknobs in my house after we host parties-

-I am not fanatical, just cautious! Others have also pointed out

good nutrition and vitamin supplementation as important--so true!

This goes for those of us who love and care for someone with any

kind of chronic condition--we need to keep ourselves healthy, too!

I also want to mention a great webiste, with easy to understand info

on autoimmune diseases (American AutoImmune Related Diseases Assoc)

www.aarda.org. They did not mention PSC on their list that I

received back in October--I did mention this via email to them.

Keep strong!

Tammy, wife of Rick, 48, AIP & PSC (6/04)

>

>

> 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.