Pregnancy & PSC

[Guest guest]

,

Thanks for your note. Sorry it took so long to get back to you. I am

getting ready to go on vacation for two weeks, and I also had guests over

this evening. Sorry to hear you were diagnosed with PSC and just 2 months

ago. You must still be in shock with a million questions. That is how I

was when I was first diagnosed. It took me a couple of years of living with

this disease to finally come to peace with it and to get a more positive

attitude. You had a number of PSC and pregnancy questions.

My husband and I were having a difficult time getting pregnant before I was

diagnosed with PSC. One miscarriage before diagnosis and two more after

diagnosis. My husband and I wanted nothing more than to have a baby. My

diagnosis was not going to stop us. Doctors told us we should not put off a

family because of PSC (also no known evidence that PSC is hereditary). They

say most people get PSC at an older age (though I am beginning to wonder),

so they didn't have much info on PSC and pregnancies. They said they would

just watch me closer if I did get pregnant. It took us 3 years and 3

miscarriages to finally get our little miracle, (2 years old now).

Because I was trying to get pregnant before my diagnosis, doctors did not

put me on any medications except to stay on my Questran to help with my

severe itching. Questran is another form/substance that our bodies already

makes, but taking it just gives our bodies more of it. Therefore, it is OK

to take during pregnancy. It does not enter into the bloodstream to the

baby. If you are considering another pregnancy and if you are not bothered

by itching, than you don't even need to worry about taking anything during

your pregnancy.

As soon as arrived, I then started taking Urso for the

first time (two years after diagnosis). Urso has been a good medication for

my PSC. I eventually stopped taking the Questran to see if the Urso would

take control of my itching. It worked great, so I dropped the Questran.

They say Urso cannot be taken during pregnancy until the last trimester (if

needed). I did not find that out until recently. All doctors have a

different opinion on that too. To answer one of your questions; yes,

getting pregnant with PSC will require you to put your disease on the back

burner. I could do that because of wanting a family so badly. One thing I

did choose to give up was breastfeeding so that I could get started on the

Urso to help my PSC. I felt selfish, but my husband reminded me that I had

to also start taking care of myself again for the baby. He had a good

point.

I felt great during my pregnancy with during the first and second

trimesters. At 6 months, I almost lost him. I started having complications

(not due to PSC). To make a long story short. I was then put on bed rest

for the rest of the pregnancy. (12 weeks total, 3.5 weeks in a hospital

bed) I was dilated to 4 at 28 weeks having contractions. I needed to stay

in bed to keep in my tummy. Once we found out his lungs were fully

developed at 34 weeks by an amnio, I returned home. They thought I would

go into labor only days after leaving the hospital. I didn't go into labor,

but had to be induced at 35 weeks because of severe itching. My itching

was getting worse between weeks 32 and 34, but by week 35 I was in tears

and scratching myself raw. I was taking Questran to the maximum and it

didn't even help. Why am I telling you all of this? Just to give you my

personal experience with pregnancy and PSC. Every pregnancy is

different (PSC related or not). I learned a lot through my pregnancy.

I found out that I could've taken Urso my last trimester to avoid the

itching, but we didn't know the itching was going to come on so quickly.

My doctors said it was too late to take the Urso at 35 weeks because it

takes about 3 to 4 weeks to get into my system. I couldn't go on itching,

so they induced me. I delivered a very healthy boy (5 lbs. 14 oz.), and

I learned what to expect with another pregnancy. I would automatically

go on Urso at the beginning of my third trimester regardless if I am

itching at that point or not. Take it for preventative reasons to carry a

baby to full term. Itching causes a fetus/baby a lot of stress, so you do

have to be careful.

Taking my PSC into account and discussing all the pros and cons, my husband

and I have decided that we would like to have one more child. I will have

to put my disease on the back burner again, but I am OK with it. We got

pregnant this last December, but it ended in miscarriage again. We plan to

try again soon, but if it ends in miscarriage, then I think the good Lord is

telling us something. Some more interesting info though, one doctor at

Mayo told me that I could stay on Urso for an entire pregnancy and another

Mayo doctor said definitely not. When I called to tell my doctors at Mayo

of my pregnancy they came to the conclusion I should stop taking the Urso

immediately. Well I started itching within days of going off the med. I

started taking my Questran again, but that takes a week to get in my system.

The itching was not fun. While waiting for the Questran to kick in, I began

to miscarry. Once I knew there was no chance for the baby, I got back on my

Urso immediately. Now remember it takes Urso awhile to get into my system,

but the weird thing is that my itching got considerably better right after

the miscarriage. So did the itching cause the miscarriage? We don't know.

Is the itching related to my PSC? We don't know for sure. Makes us wonder.

My husband and I are ready to try one more time for a successful pregnancy.

After the miscommunication between the doctors and me, I now know the

correct way to enter into another pregnancy. I will get the Questran in my

system prior to trying to conceive and stop the Urso as well. This info is

to give you heads-up on medications with a PSC pregnancy. Because of my

doctors and my miscommunication, the entire medication thing

got mixed up. The doctors say the Urso did not cause my miscarriage,

but who really knows. All I know is that this miscarriage was

a blessing because otherwise I would have worried the entire pregnancy about

being on Urso when the baby was conceived when I shouldn't have been on it.

So this is heads up on Urso. A thought or message to confuse you though.

My OBgyn does not agree with going off the Urso. She doesn't see any harm

for the baby while staying on it and feels I would be taking better care of

my disease. Another gastronologist (in Maine), who knows my case, also

agrees with the OBgyn. So I have 3 out of the 4 doctors telling me to stay

on Urso

during a pregnancy. What is the correct way? My husband and I decided to

try the Questran first and go off Urso to be absolutely safe like we did

with my pregnancy carrying and to also just put it in God's hands.

Otherwise, I could go nuts thinking about it.

I hope my story helps you, (and others with PSC pregnancy questions).

One last question you asked was about being afraid to have to leave my child

(or children early). I am very sad to think about the possibility of

leaving and another child behind too early, but I would be living by a

big " what if " situation. I know I have a great husband who is a great

father. If I would ever have to leave them early, I feel very good about

him raising them. I know he will be great about teaching and telling

(and a brother or sister) all about me and how much I love them and what I

would love for their futures. He will still make my life a part of 's

life (or their lives). I have comfort in that. Don't get me wrong though,

I

am going to do everything I can stay around for a long time. Technology is

amazing and it just keeps getting better. I have to have confidence in my

doctors and stay positive no matter what happens. I didn't want to put off

having a family because of this terrible disease. Now if my body would have

been in worse shape than it was before , I probably wouldn't have tried

to get pregnant. And so far, my body is up for trying for one more. If

things change for another successful pregnancy, then I am very happy with

just my one little miracle, .

, or anyone else out there, if you have any more questions, please let

me know. I promise not to ramble on so much the next time. There was just

a lot to tell to get you all the info you are looking for. It is not fair

to be diagnosed with PSC at such a young age (or at any age for that

matter), so I can understand all the questions you must have. Hang in

there. The longer you live with PSC and the longer you get to know how

your body feels with PSC, the more your mind will be put at ease (as best as

it can anyway). You shouldn't have to come at ease with a disease though.

Nobody should. But we have to make the best of the matter. Try to stay

positive.

Ask this support group any question under the sun that pops into your head

about PSC. The group sounds like a great help and support line. I have

only been a member for two days, and I feel all the more better already. I

am so glad I found this group to be able to talk to someone like you and

others.

A fellow PSCer in Maine,

Gail

Re: pregnancy & psc

> Hello Gail,

>

> welcome to this group.

> I have joined in only from last week. I was diagnosed 2 months ago and

have

> a lot of questions.

> I admire your positive way of looking to the disease. Aren't you afraid to

> have to leave your child too early? Do you have the confidence you wil

live

> quite long.

> Maybe you can help me with one of my questions. Did you get pregnant

knowing

> to have PSC and did you use medicine or you just stopped with Ursochol for

> these 9 months. Didn't you think that is a risk for the disease? How did

the

> disease go after the birth?

> What did you get a boy or a girl?

>

> I'm waiting for your answers,

>

> Thank you and greetings.

> (35, Dutch, mother of 1 litte boy)

> -----Oorspronkelijk bericht-----

> Van: Gail Larson

> Aan: egroups <egroups>

> Datum: woensdag 19 juli 2000 15:28

> Onderwerp: New to the Group

>

>

> >My name is Gail Larson, and I live in Maine. My husband, my son and

> >I moved to Maine this past September from Wisconsin due to my

> >husband's job change. I found this support group by contacting

> >Cheryl Woodling (new member of the PSC support egroup), and she

> >recommended this site/egroup. Thanks, Cheryl!

> >

> >I was diagnosed with PSC at age 26, and I am now age 30. I visited a

> >number of doctors before getting properly diagnosed at Mayo Clinic in

> >Rochester, MN (in '96). I am in Stage 2. Major symptoms are

> >itching, occasional upper abdominal pain/discomfort and fatigue. I

> >was on Questran to help with the itching during my pregnancy with my

> >son. At 8 months in my pregnancy, the Questran didn't work anymore

> >to control the itching. I had to deliver my son a month early, but

> >he was born very healthy though a little small. After my pregnancy,

> >I was able to get off the Questran (awful tasting) and start taking

> >Urso (Actigall). I take 1,500 mg of Urso a day. It definitely keeps

> >the itching under control. My upper abdominal pain is also extremely

> >better than when I was only taking the Questran.

> >

> >Because this is my first note to the group, I do not want to go into

> >great detail about all my concerns and questions, although I don't

> >mind sharing any info and would love to hear others regarding their

> >PSC.

> >

> >I have to say that I am pretty computer literate as far a software

> >programs go, but I don't feel real comfortable getting around in the

> >internet. I am not real sure about how to get into chat rooms or how

> >to get in the loop of these internet support groups. I need help in

> >how to get more PSC info on the internet and most of all need help in

> >reaching other people that suffer from PSC to give and get support.

> >My husband has been great support to me during the last 4 years, but

> >I need to communicate and relate to other people who have the

> >disease.

> >

> >Just a note, I was devastated when I was finally properly diagnosed

> >with PSC, but also relieved. Although I wish I could make the

> >disease go away, it has definitely made me look at my life

> >differently. It has changed my life so much. Even though I do not

> >like dealing with the symptoms of PSC, I can say that I am glad that

> >it has touched my life. Before the disease, I took life for granted

> >and everything around me. Now with the disease, I enjoy life more

> >and especially everything around me. It has brought me closer with

> >God, and I am very thankful for that. Without being diagnosed with

> >PSC, I wonder if my life would still be in the fast lane taking

> >everything for granted????? Now I just pray that my disease will

> >stay at its current slow progression. To all you PSCers out there, I

> >hope that you have come to peace or will come to peace with having

> >the disease. Yes, it is very scary, but we have to stay positive. I

> >do not want to down-play our disease, but it could be worse. I

> >always think about loved ones that are killed in an automobile

> >accident without the chance to say good-bye. Or loved ones that

> >tried to battled cancer in a very short time frame and not winning in

> >the end. Those loved ones were not able to prepare or get their life

> >in order. We have that chance if our PSC is at a slow progression.

> >

> >I would love to be a part of this PSC support egroup. Like I said

> >earlier, I look forward to communicating with others who also suffer

> >from PSC.

> >

> >Sincerely,

> >Gail Larson

> >

> >cheeseheads@...

> >

> >

> >------------------------------------------------------------------------

> >Old school buds here:

> >http://click./1/7081/11/_/24674/_/964009634/

> >------------------------------------------------------------------------

> >

> >

> >

>

>