Re: New to the Group

[Guest guest]

Judy--

Welcome to our group, though it is too bad this is the type of group that a

person

gets involved in with when dealing with PSC. There are a lot of people in

this group at various stages, who can hopefully answer a lot of your

questions and just be there to help you through.

I myself have been diagnosed with PSC since 1987, though I had symptoms of it

and had cholangitis (which my drs say is the same as PSC) as far back as

1980. I am at the " end stage " , but am not on the transplant (tx) list yet.

So you see, it can be a long time before you need to worry about a liver tx

-- it varies with the individual.

Again, welcome and take care.

Laurie

[Guest guest]

In a message dated 12/26/99 9:09:24 PM Eastern Standard Time,

Oceandrmer@... writes:

<< Judy--

Welcome to our group, though it is too bad this is the type of group that a

person

gets involved in with when dealing with PSC. There are a lot of people in

this group at various stages, who can hopefully answer a lot of your

questions and just be there to help you through.

I myself have been diagnosed with PSC since 1987, though I had symptoms of

it

and had cholangitis (which my drs say is the same as PSC) as far back as

1980. I am at the " end stage " , but am not on the transplant (tx) list yet.

So you see, it can be a long time before you need to worry about a liver tx

-- it varies with the individual.

Again, welcome and take care.

Laurie

>>

Laurie:

Thanks for writing, for the welcome and reassurance. It is appreciated.

Judy

[Guest guest]

In a message dated 12/28/1999 11:49:51 PM Eastern Standard Time,

palfeld@... writes:

<< udy,

You need to get checked for Ulcerative Colitis which frequently goes along

with

PSC. Phil had UC for 30 years before the PSC was diagnosed but some people

get

it afterwards. If you vacilate between constipation and diarrhea you might

have

UBS (Irritable Bowel Syndrome) It can come and go and give you cramps that

are as

bad as labor pains. I've had it and go in and out of it periodically. I

find

that staying away from fried and spicy stuff, lots of water, acidophilus

and

enough bulk foods really helps. The doctor gave me levebid but I don't see

that

it helps much, watching my diet and taking acidophilus seems to be the best

to

control it.

Peg (wife of Phil - dx PSC 12/98).

>>

Peg:

You are right I do have IBS, but rarely have diarrhea with it, it is usually

the constipation and this incident seems really strange to me. Since I just

had the GB out a few weeks ago I have a feeling there is some connection. I

try to stay away from greasy and spicy foods and pretty much get stomach

distress with everything but bland foods.

I have since read the Gallbladder message board and see that some people have

these symptoms for a year afterwards. Just what I need!!

Thanks for your concern.

Judy

[Guest guest]

Judy,

After I had my gallbladder out, I couldn't eat anything but jello for

two weeks. After that, I had to take it really slow, and work my way up to

normal foods. Just give your body a chance to work out all the kinks=)

Love,

[Guest guest]

Welcome Judy,

Sounds like you have been through a lot leading to your diagnosis. I am

also a 46 Yr old woman with PSC, married with one son who will be 21 next

week. I was diagnosed with both PSC and Crohn's disease in Spring 1998.

The worst part for me, so far, was the shock of finding out and the weeks

afterward when I was reading about the disease and adjusting to the whole

thing. Very scary ! I am quite aware of what liver failure " looks like "

because I have spent a good part of my career working in hospitals/

healthcare. Despite this, and possibly because of my experiences with sick

people, it is my belief that attitude and emotional and spiritual

well-being are the important part of living with this disease or no disease.

Participation in this group has helped me in so many ways and has only

reinforced that belief. Since many people in my life do not even know I

have the diseases, the group gives me a place to talk about it and learn

from others experiences without always bringing it into my everyday world.

I have also found that most people outside here have no understanding of

that disease, even if you do explain it to them...it gets confused with

hepatitis or cancer or whatever...usually easier just not bring it up.

I am a Registered Dietitian, but am presently working full-time partly out

of my home office for a small company in a related field. Thankfully, I

live quite a normal, active and enjoyable life right now. Looking forward

to your participation in the group. Take Care.

H. -New Hampshire

New to the Group

Hi all:

My name is Judy and I live near Dayton, Ohio. Not very far from we

discovered yesterday. We will even go to the same doctor. I am glad I

discovered this group as I am very confused right now and don't really know

much yet about my condition. I am 46 years old, I work full time as an

administrative assistant for a large defense contractor. My husband of 25

years is an air traffic controller. (He also is an angel and took very good

care of me after my GB surgery.) I have one son who is 22 and lives in

Columbus, Ohio.

I have always had irritable bowel and recently started having gall bladder

problems. I had lots of bloodwork run while they were trying to decide if I

needed gall bladder surgery and during those tests they discovered I had

elevated liver enzymes. They decided that while they were taking out the

gall bladder they would do a liver biopsy. The lab here in Dayton couldn't

decide what the diagnosis was and the sample was sent off to the Mayo

Clinic.

The results came back as sclerosing cholangitis.

I had lots of complications during the GB surgery. The doctor tried to do

it

laproscopically, but ran into scar tissue from an earlier surgery. Instead

of opening me up he decided to laser his way through the scar tissue to the

gall bladder. All seemed to be going well. They put me in recovery and

then

I started to bleed profusely. I developed a huge hematoma (blood under my

skin) the size of 2 1/2 basketballs on my stomach and hip. They were very

worried about the blood loss and I ended up having to get two pints of

blood.

The liver had to work extra hard to get rid of the hematoma and I turned

yellow for 3 days because of it. I had lots of pain and ended up in the

hospital for a total of 9 days. My surgeon said he thinks I have some type

of bleeding disorder and need to be tested for that also.

My surgeon said I need to see a specialist at a large University hospital

and

my family doctor has referred me to a doctor at the University of

Cincinnati.

My family doctor said I am the first person he has ever had with this

condition, but he knew right away what it was. Although he scared the heck

out of me when he said that I'd probably have to be placed on the liver

transplant list and then walked away!! But, if it wern't for his

persistance

on my bloodwork, I would have never found out that I had PSC, so I have to

forgive his bedside manner. When I walked out of his office that day I felt

like I'd been punched in the stomach -- very nervous and scared. I don't

have an appointment yet with the specialist and they are going to call me on

Monday with one.

My GB surgeon said the disease is in the very early stages. I am very

nervous to hear what the doctor says. I am a worry wart and this is not

going to be easy for me. I've begun having mini panic attacks in the middle

of the night -- 3 so far this week. I'm not normally a wimp, but I have

become one in the past month after all I've been through. I am so grateful

to have found this group and am looking forward to participating.

Judy

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- Simplifying group communications

[Guest guest]

Dear Judy,

Welcome to this wonderful group!! I know that you will be richly blessed

by the group as I have been. They've all become best friends to me!! May the

Lord bless you and keep you!

Much love and prayers,

Jacquelyn Spencer

[Guest guest]

In a message dated 01/08/2000 5:13:31 PM Eastern Standard Time, JQS2@...

writes:

<< Dear Judy,

Welcome to this wonderful group!! I know that you will be richly blessed

by the group as I have been. They've all become best friends to me!! May

the

Lord bless you and keep you!

Much love and prayers,

Jacquelyn Spencer >>

Jacquelyn:

Thanks for the welcome! Glad you're back. Everyone has been concerned about

you. I am getting attached to the group as well. So unusual to have such a

great group of caring individuals. We are all wishing you the best and

praying that the doctors will work out a solution for you soon.

Take care,

Judy

[Guest guest]

http://health.groups.yahoo.com/group/miralax/files/---

Subject: New to the groupTo: miralax Date: Saturday, January 2, 2010, 9:30 AM

hi thereI am new to this group my 2 1/2 yr old has had poop problems since she was 11 months old when we moved out of state and she started to wean from nursing. she really only poops about every 10 days or so and it isnt all the much, we took her to a GI doctor after her ped put her on miralax everyday which we werent confortable with, although it works. the GI ordered blood work and wants us to keep our daughter on miralax minerial oil and a benefiber wafer well i am not comfortable wirth this at all fist she wont eat the wafer and second she wont take the mineral oil and third the miralax scares me. So we havent done any thing different and my daughter continues to not poop we do use the miralax every ten days or so for 5 days but it doesnt seem to help when we use it that way and now my kid is going on 11 days of no poop we tried the power pudding recipe it didnt work we give her three whole prunes cut up every day that doesnt work i dont

know what to do and her ped wont see her anymore because we havnet followed his orders so could someone anyone give us some help what to do? pleasethank you

[Guest guest]

, you may want to share your story about the low potassium, I think it's a good senerio of what peg can do to a child. I can't believe docs don't tell these parents about the dangers of aspirating it into the lungs and how it pulls too much water which can harm someone and the salt, calcium and magnesium depletion. It's all there in black and white and yet they some how forget this part.

From: mama2beachbabies <mama2beachbabies@ yahoo.com>Subject: New to the groupTo: miralax@yahoogroups .comDate: Saturday, January 2, 2010, 7:30 AM

hi thereI m new to this group my 2 1/2 yr old has had poop problems since she was 11 months old when we moved out of state and she started to wean from nursing. she really only poops about every 10 days or so and it isnt all the much, we took her to a GI doctor after her ped put her on miralax everyday which we werent confortable with, although it works. the GI ordered blood work and wants us to keep our daughter on miralax minerial oil and a benefiber wafer well i am not comfortable wirth this at all fist she wont eat the wafer and second she wont take the mineral oil and third the miralax scares me. So we havent done any thing different and my daughter continues to not poop we do use the miralax every ten days or so for 5 days but it doesnt seem to help when we use it that way and now my kid is going on 11 days of no poop we tried the power pudding recipe it didnt work we give her three whole prunes cut up every day that doesnt work i dont

know what to do and her ped wont see her anymore because we havnet followed his orders so could someone anyone give us some help what to do? pleasethank you

[Guest guest]

When I researched mineral oil and saw that it can actually clog the lymph system when used long term, that was all it took to cause us to stop giving it to my grandson.

To: miralax Sent: Sat, January 2, 2010 11:39:20 AMSubject: Re: New to the group

Hi and welcome to the group! 1st I want to say Im sorry your daughter is struggling. Your instincts are write in not trusting PEG(miralax) as you well learn why in this group. 10 days means that she most likely is stretched to the 10th day, in other words it takes that many days for her intestines to fill up and depending on how long this has been going on most likely mega colon. You need to work on shrinking her intestines and this means create movements much sooner over and over until you can get her days down to much less. Although I understand the reason for your ped to do mineral oil I dont recommend it. Especially from oral. Children can asperate from it. I would avoid giving oils straight instead mix in foods. Years ago after our ped put our son on mineral oil our sons neuro said take him off of it. It coats the intestines/stays there and well cause more issues. It interferes with medications, nutrients being absorbed. When my son

was on it and he would have a movement in the bath, it would take scouring powder to get it off the tub walls, imagine what it is doing to the intestines, specifically the stomach. I recommend using olive oil instead, it well not do all that and it is actually very healing to the intestines/stomach. Kills bad bacteria and some say virus's(we even use the olive leaf extract). Now as much as I dislike mineral oil we have had to use as an enema, but we also use irrigations with sodium chloride to clean it out(this is with doc script). Some well use a fleet enema after to do this. The oil well soften the impacted stool(Im sure she is impacted) and then the fleet well cleanout the oil and stool. Not many here are fans with enema fleets but sometimes you have to outweigh the situation and it is needed. 10 days I wouldnt hesitate to use colon cleanouts. She needs oral and colon cleanout at this point. At her age I would start with vitamin C. Dont use the whole

pill, I would crush it and put in something sweet etc. You mentioned pudding. Vitamin C well loosen stools and sometimes even stimulate the movements. Try 1000mg's(1 gram) to start. Have you worked on taking the constipating foods out of her diet? Rice and cheese is at the top of the list for us. Banana's, etc. Pasta's, etc. Once things are working/intestines is healed maybe these can be used on occaission but I would limit them. My son doesnt miss any of them and so we dont give them to him. Also magnesium citrate is another supplement that can cleanout the intestines. Many here have success with childrens form of natural calm. My son would not drink for nothing so we found a magnesium citrate/oxide blend in capsule/powder form. We take it and mix in he pureed foods, you can use puddings, smoothie's etc to disguise the taste. Straight citrate is impossible to disguise but this mix powder blend has worked for us. Health and vitamin stores carry

it. But the first thing at this point is to clean her out. Honestly im kinda surprised your ped hasnt recommended an enema at this point. There is plenty more things to do and the group well share them with you. I dont want to over do your brain at this time on trying to figure out what to do. So these are some basics. Later....gi healing from bacteria, viral, fungal, yeast(these are huge constipating issues especially if child has had antibiotics/fungal byproduct). Jennie<><

Subject: New to the groupTo: miralax Date: Saturday, January 2, 2010, 7:30 AM

hi thereI m new to this group my 2 1/2 yr old has had poop problems since she was 11 months old when we moved out of state and she started to wean from nursing. she really only poops about every 10 days or so and it isnt all the much, we took her to a GI doctor after her ped put her on miralax everyday which we werent confortable with, although it works. the GI ordered blood work and wants us to keep our daughter on miralax minerial oil and a benefiber wafer well i am not comfortable wirth this at all fist she wont eat the wafer and second she wont take the mineral oil and third the miralax scares me. So we havent done any thing different and my daughter continues to not poop we do use the miralax every ten days or so for 5 days but it doesnt seem to help when we use it that way and now my kid is going on 11 days of no poop we tried the power pudding recipe it didnt work we give her three whole prunes cut up every day that doesnt work i dont know

what to do and her ped wont see her anymore because we havnet followed his orders so could someone anyone give us some help what to do? pleasethank you

[Guest guest]

Can't imagine what Miralax clogs..................

From: mama2beachbabies <mama2beachbabies@ yahoo.com>Subject: New to the groupTo: miralax@yahoogroups .comDate: Saturday, January 2, 2010, 7:30 AM

hi thereI m new to this group my 2 1/2 yr old has had poop problems since she was 11 months old when we moved out of state and she started to wean from nursing. she really only poops about every 10 days or so and it isnt all the much, we took her to a GI doctor after her ped put her on miralax everyday which we werent confortable with, although it works. the GI ordered blood work and wants us to keep our daughter on miralax minerial oil and a benefiber wafer well i am not comfortable wirth this at all fist she wont eat the wafer and second she wont take the mineral oil and third the miralax scares me. So we havent done any thing different and my daughter continues to not poop we do use the miralax every ten days or so for 5 days but it doesnt seem to help when we use it that way and now my kid is going on 11 days of no poop we tried the power pudding recipe it didnt work we give her three whole prunes cut up every day that doesnt work i dont

know what to do and her ped wont see her anymore because we havnet followed his orders so could someone anyone give us some help what to do? pleasethank you

[Guest guest]

It is nice to meet you, Simone. I am happy that you have responded well to your

treatment and have been able to return to work. I, too, have responded well to

my treatment and have been able to return to work. Although, it was a long road

and I wasn't sure I would make it. But I did! I take a multitude of medications,

along with lots of treatments, but it's what it takes to keep me going and

functioning. I'll take it. Welcome to the group!

April

Sent from my Verizon Wireless Phone

New to the group

Hello,

My name is Simone and I am 27 years old. I´m Brazilian and I apologize for my

English, because it isn’t good. But this group have motivated I improve my

English.

I was diagnosed with Still’s Disease since last year (September) and until now

I have been treated.  I had only one outbreak  characterized by systemic

symptoms (fever around two months, rush and itch in the body,  pain in the

articulations, and alterations in the laboratory variables. I was hospitalized

for 20 days and it was terrible for me and my family. I didn’t response to

AINE therapy, but presented good response to steroid treatment.  Now, passed 11

months, I am taking prednisone (15 mg/day); methotrexate (15 mg/week); sodium

alendronate (70 mg/week); D vitamin, omeprazole, domperidone and folic acid.

Since I started the steroid treatment, I haven’t had any signs of disease and

I have had a good evolution.  Now I work normally and my life is good and I’m

happy with my response to the treatment.

I follow the treatment in the university hospital in Brazil. I really think that

exchange information about this disease is very important to patient and its

family, and can improve the life’s quality.

I confess that I have worried me about the stories reported in this group,

because some are very sad… and I know how is difficult to be sick. In other

hand, I am happy to meet people very solidary and willing to help others living

with this disease. 

Thanks for the help! I wish health to all.

Hugs