How do you figure out where the pain is coming from?

[Guest guest]

How do you know if the pain in the upper right quadrant is PSC related

or UC related?

Noah has had abdominal pain off and on for weeks now. It is making him

miss a lot of school. I don't know what to do. We are getting to the

point where we are worse than we were before diagnosis. How does PSC

progress? Do you get a more painful liver? Or is it the UC?

Thanks in advance for any help.

Frustrated mom,

www.caringbridge.org/visit/noahwmartens

[Guest guest]

Hi , I feel your frustration and empathise completely.

Its a funny old world, my problem for a while was the opposite of

Noahs. Under a particular dr I spent months trying to get thru to him

that after years of being ill I could distinguish between my liver pain

& bowel pain. He kept insisting that the liver pain was IBS, I now

know unfortunately that I was right & he was wrong!

It is really difficult for a child to be able to understand exactly

what the pain is related to. For me it took years of being ill and

listening to my body to be able to pinpoint things, as well as having a

more than an average understanding of medicine/diseases!

I don't have UC but I do suffer bowel problems so for whats its worth I

know that the pain under my ribs on my right side is definately due to

the liver, anything below the ribs so left/right lower quadrant is more

than often bowel related. For me it is usually left lower quadrant.

How do I know this so confidently? Well I suffered bowel problems way

before PSC & never had RUQ pain. This only started with my gallbladder

& PSC problems. Also when they did my last ERCP as soon as they

injected the dye into my ducts the pain I experience every day was

replicated (though more severly showing that this was coming from

the damaged ducts. Also for me I experience one pain without the other

so to my thinking this confirms that the 2 are separate.

Also a lot of the research I have done does confirm that RUQ pain is

usually related to the liver.

Interestingly for me I have been able to predict the last few times

that my liver function tests would be worse as the liver pain had

increased, much to the surprise of my doctors! However I know not

everyone is the same, but for me my liver pain has increased with the

PSC progressing. It will be useful to see what the others experience.

I hope this is of some help, sorry for the long reply but I wanted to

give as much help as I could.

My thoughts are with both you & Noah.

Best wishes

(in the UK)

PSC 07, recurrent esophagitis & gastritis, gastro paresis,

osteopenia, endometriosis leading to total hysterectomy 2004,

gallbladder removed 2005

>

> How do you know if the pain in the upper right quadrant is PSC

related

> or UC related?

> Noah has had abdominal pain off and on for weeks now. It is making

him

> miss a lot of school. I don't know what to do. We are getting to

the

> point where we are worse than we were before diagnosis. How does PSC

> progress? Do you get a more painful liver? Or is it the UC?

> Thanks in advance for any help.

> Frustrated mom,

>

> www.caringbridge.org/visit/noahwmartens

>

[Guest guest]

Hi ,

I know you from Liver Families site. Tyler has the abdominal pain from time to time that you describe. It is from his PSC. He doesn't have UC. So, I don't know if this helps you or not. But, I thought I'd respond and send our wishes that Noah feels better soon.

Cindy

Mom to Tyler age 15 PSC since Oct. 2006

See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hey Cindy,

How often do you guess Tyler gets the pain and do the docs do anything

for it?

Noah's frequency has increased. He hardly makes it to school. This is

day 2 in a row this week. Yippe!

[Guest guest]

Was a cholangitis attack around the corner? I guess I wish there were

something to treat or a way to diminish the pain.

Thanx for the reply.

[Guest guest]

Hey there ,

Tyler has pain frequently. It varies in intensity but rarely is absent. He takes Motrin as needed for pain. When it is terribly painful he takes Tylenol 3 W/codeine. He hasn't been public schooled in 7 years. I'm thankful that is our way of life already because he couldn't make it through his extreme fatigue and frequent pain to go to public school. He has good days and bad days....good and bad moments in a day even. He tends to have more frequent extreme pain if he gets too fatigued. So, resting each day and getting the most sleep possible is important for him. If he goes out in the back yard to play badminton with his dad or brother for a short time....30 min. even. He has pain for the rest of the day.

It's hard for a 15 yr. old who is use to being very physically active before Oct. 2006 awaking in pain and spending 11 days hospitalized. Tyler loved tennis, basketball and running. He and his dad and brother would play tennis for 4-6 hours on a regular basis. He played basketball on a team. He loved running with Mike when he'd run for PT for Army Physical Training. He's run with Mike since kindergarten. In public elementary school the PE teacher was amazed at his physical strength and endurance during running laps. He could outlast all his peers in speed and endurance. So, as you can imagine this is hard on him. But, he knows his limits and has learned he doesn't want to pay for playing with extreme pain.

Some days he's so fatigued he has to rest in between each subject's lesson. It's tough watching him be so compromised. But, he has good spirits. He's got a heart of gold. We can only continue to love, support him and have hope for a transplant to return his health eventually. The transplant team meets today to decide on listing him or not. I don't know how to feel. I'm just praying for strength for the journey whatever their decision is.

Noah is in our prayers. Tell him he has prayer PSC partners in the DC area!

Love a fellow PSC mom,

Cindy, mom to Tyler 15 PSC 10/06.See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Thanks for your encouraging thoughts and words. I can't imagine what goes on in Tyler's head. He doesn't talk about bad thoughts too much. He shares from time to time questions he has about how he's feeling. Mainly, at times he gets frustrated with wanting to do more than he physically feels like. The other thing that bothers him is that he doesn't feel like most of his doctors this past year have believed how bad he's feeling. He shuts down and won't talk to them only to myself and his dad or brother about how he really feels. He's a private person and always has been. He's a comic and entertainer. But, that draws the attention away from you personally to the laughter and the joke. We know this about him. The doctors are just learning what his quirks and personality are like. I sometimes feel that I'm researching to learn more about this disease and it's aspects that the doctors who have treated him. I mean, they have several diseases and patients to follow. I'm following Tyler and PSC research from USA and UK. Thanks for your understanding. I'm thankful that within the last month I've found PSC support and PSC moms at yahoo. I've also found Liver Families web site very supportive and helpful for information as well. PSC Partners Seeking a Cure Foundation is a godsend of information on the latest scientific research as well. It's comforting to know that there are others out there who understand what you are going through and acknowledge your feelings, symptoms and pain as real.

Thanks again you guys!

Cindy, mom to Tyler (15) PSC Oct. 2006See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

I must have missed the original post, but when reading your comments on your son

it brought back many memories of my son Todd. Todd was diagnosed with PSC and

Crohns when he was 15 (he is now 21) and he had many of the same feelings about

the doctors not understanding the kind of pain he was experiencing. His mood was

always low and frustrated when he saw them. They never got to experience the

young funny loving kid we knew. After his transplant and he got better they were

able to see what a great kid he is. It has made this time around with the

recurrent PSC in a way easier. I wish you the best of luck in your search for

answers. You have found a great group here for support and knowledge.

Joanne (mom of Todd, 21, psc 01, crohns 02, tx twice 03, rPSC 05, diabetes 06,

living life to the fullest 07)

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