A new member with questions

[Guest guest]

Hi Folks,

I'm new to this chat group thing but I have PSC and am desperate to

connect with others who also have the disease and are struggling with

what I am struggling with. I have had PSC for 16 years ( I am 31

now) and am doing pretty well (knock on wood), but of course I live

with this prognosis hanging over my head and the idea of transplant

looming in my future. For the most part my only physical symptoms at

this point are soreness on my right side and a pressure and tingling

below my solar plexus. Tests show my spleen is enlarged and my Alk

Phos is elevated (currently around 200). Apparently I have early

stages of chirrosis. Anyone who has a minute to write me and tell me

about their experiences would make a huge difference to me. I feel

very very lonely in my struggle with this disease. Sometimes it

feels like nobody I know and love can really understand what I am

going through and the fears I live with every day. I am just so

curious about what others with PSC have experienced, including

transplant and life after.

I also have a question- I am more inclined to natural healing methods

and have been doing them since I was diagnosed. I resisted taking

URSO until about 2 years ago. Now they want to double my dose based

on new research. For some reason I am resisting this. Although the

URSO has lowered my LFTs (especially AST and ALT which are now

normal) and has allowed me to eat foods that used to make me sick

(tortilla chips, fried things) I feel that other symptoms have

worsened since I started it. Soreness and sensation around my liver

are a daily occurence for me now and they were far less frequent

before I started the med. Does anyone else have similar

experiences? Is everyone taking the higher dose? Is anyone else

trying alternative approaches to dealing with PSC?

Sorry for the length of the message!

Liza

[Guest guest]

Liza, Hello! I am a mom of a 9 yr. old PSC'er (sounds like a division of

scouts :-) I have been out of this loop for a while as I haven't recieved

any liver support posts for weeks. I checked my mail this morning and

read yours first. I wanted to let you know that there are a few in this

group who have had great results with natural healing. You spoke of

having bad results from eating fried foods.We have definitely seen big

reactions to changes in diet with . Our main things we avoid are

hydrogenated oils and dairy. But we try to avoid white flour, refined

sugar etc. If you would like to hear about supplements that have worked

for us you can e-mail me privately at kevkay@... (so I don't go

through all that if you aren't interested :-)Welcome to the group, though

as we say, sorry you have a reason to be here. Faith ('s mom)

[Guest guest]

Hello Liza,

Welcome to the family. So sorry that you had a reason to come looking for us, but glad you found us.

am desperate to connect with others who also have the disease

It can be lonely having a disease that few people have heard of.

Anyone who has a minute to write me and tell me about their experiences would make a huge difference to me.

I'm not sure what exactly you want to know. I've been dx since '01, but was sick for years. I had my gall bladder out in '93. After that I got even sicker than I had been before they took it out. I also have ulcerative colitis. I have fatigue really bad and quit work last year. I am receiving Soc. Sec. Disability. I get pain high in my back and high up under the ribs. I have itching pretty bad also. I was getting really bad cholangitis attacks, but haven't had one for over two years now (knock on wood). I seem to get pancreatitis every time I have an ERCP (which is done yearly right now). I have monthly blood tests because I take 6-mp for my UC and it can cause problems. I see my doctor every two months. My AST and ALT are always elevated around 200 and my Alk. Phos. is usually around 600-700. My bilirubin hasn't been elvated since my last bout of pancreatitis.

I am just so curious about what others with PSC have experienced, including transplant and life after.

I suffer from a variety of health problems: fibromyalgia, hypothyroid, hiatal hernia, ulcer, chronic sinus inflamation,and I have a neck and shoulder injury that causes me a significant amount of pain, including frequent migraines.I also have depression. I take nexium which controls my stomach and hiatal hernia. I take synthyroid which successfully treats thyroid. I can't take urso gives me pain and diarrhea. I also have a lot of trouble with taking pain meds. I do take hydrocodone for break away pain (the kind of pain that I used to end up in the ER with). I can't take anti-depressants (bad reations) so I am now seeing a counselor and think that is helping. My husband is a huge help and support. I also have family around that helps. I do have quite a bit of stress in my life outside of health issues, but I am working on dealing with the stress. I also have a question- I am more inclined to natural healing methods and have been doing them since I was diagnosed. Does anyone else have similar experiences? Is everyone taking the higher dose?

There are only one or two other people who can't take Urso as I recall. Not everyone is on it, but I would guess most are. Also it seems like most are on the new higher doses. Nothing has helped my itching either. I use ice packs for really "hot" spots. and atarax or benedryl just to knock me out. Is anyone else trying alternative approaches to dealing with PSC?

Patti, Mike's(PSCer)wife, and Faith use a lot of natural products. Maybe they could help you out. Most of us try to control our diet--low fat, low salt, many are vegetarian. Sorry for the length of the message!Don't worry about the length of message. When you do reply to someone, delete the last message or parts like I did. If you have any particular fears concerns about transplants or future, ask away. Someone can help you. I'm looking forward to getting to know you.

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)

[Guest guest]

Hi Liza,

I too feel very alone at times as it is very difficult for friends and family to understand how you feel. I was only diagnosed with PSC a couple of months ago, but have been struggling with UC for as long as I can remember(officially diagnosed 4 years ago). I am also 31 and have a 22 month old son (and a great husband). I have found this group really informative, but I do try not to absorb myself too much into the details as I find it just makes me stress and feel sorry for myself.

I am right into natural therapies and diet. I have been on a dairy and wheat free diet for the last 6 weeks and I have noticed significant improvement in my energy levels. I also watch my saturated fat and sugar intake and try to avoid preservative 220 (sulphur dioxide). I take mesalizine (2g/day) for the UC and was taking URSO until my doctor took me off it due to negative side affects (chronic headaches). My PSC is not symptomatic at the moment. I also take calcium, magnesium, probiotics and folic acid (the folic acid is preparation to have another child).

My philosophy at the moment is live for the moment but look after your body for the future and I truly believe that a positive attitude has great power over your physical well being.

Take care,

Fiona (Sydney, Australia)Liza wrote:

Hi Folks,I'm new to this chat group thing but I have PSC and am desperate to connect with others who also have the disease and are struggling with what I am struggling with.

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