Re:ERCPS more harm than good?

[Guest guest]

I had an ERCP in 1993 to dx my PSC. We avoided them thereafter because of the danger of invasive procedures until 2004 when my PSC caused multiple strictures as well as a question of CCA noted on an MRCP. I ended up with a massive GI bleed several days post ERCP on one occasion - required 8 units of blood. It is not a procedure to take lightly.

April

Watch free concerts with Pink, Rod , Oasis and more. Visit MSN In Concert today.

[Guest guest]

>My MRCPs seem to show what we need to know since I have not needed a

stent yet.......

We opted for an MRCP for our son instead of a repeat biopsy or an ERCP

and feel that, for his current situation, it was the best choice.

And, thanks to all those who talked about the trio of choices with

hubby and me in April --you were all helpful. )

--Meghan, mom to Wyatt (12yo: UC & PSC 1/07: FAP 8/01)

[Guest guest]

> We opted for an MRCP for our son instead of a repeat biopsy or an ERCP

> and feel that, for his current situation, it was the best choice.

> And, thanks to all those who talked about the trio of choices with

> hubby and me in April --you were all helpful. )

Meghan -

It was good to hear from you. I was thinking about you all just the

other day and wondering how Wyatt was doing.

Joanne

(, Ca., mom of , 16, UC/PSC 2-06; JRA 1998)

[Guest guest]

> Meghan -

It was good to hear from you. I was thinking about you all just the

other day and wondering how Wyatt was doing.

Joanne

Hi Joanne,

I was thinking about all of you just 2 days ago, too. I truly hope

things have been going well for (and all of you). You made

quite an impression on my husband, btw. He's mentioned you even more

often.

Wyatt is doing quite well for the most part (the 'big stuff' is going

well, he has only smaller issues). His liver numbers have all

dropped to normal now (as of his April labs) and his colitis gives

him grief only one day a month, which is like bliss. Right now, he

is still taking the prescription probiotic, but we are continuing to

gather information on it and have hesitations both about continuing

it as well as stopping it. The hives and rashes Wyatt gets that we'd

all thought must be related to the probiotic may not be.

Until/unless we take him off, we won't be able to test that out. The

Claritin he was taking for the hives stopped working and he was

breaking out in hives and rashes even when just walking fast or

hiking mildly, so he starts on Zyrtec tomorrow. He saw his

Pediatrican today for bone and joint pains that have increased from

infrequent to almost daily. The Ped said he'd like to have Wyatt take

otc anti-inflammatories for the pains, but will check with the GI.

Wyatt's still tired a lot, but other than what I've mentioned, he's

doing quite well. Russ and I have asked the GI to put Wyatt on high-

dose URSO, but the dr wanted to investigate it first b/c he didn't

know much about it. When we see him later this month for Wyatt's

next appt, we'll discuss and move forward with that (as well as

further discuss the probiotic).

We went to Stanford last month and met with 2 drs (Hurwitz and )

and it was a very informative visit. We're keeping a link to

Stanford and return again in the summer. We're returning to UCSF in

the summer also (went in Feb for the 2nd opinion after dx), but we'll

be seeing a different dr (recommended to us by Dr Vierling in Denver

and by Soloway's GI). Wyatt will have his upper and lower

GI scopes again this summer (for his FAP, to remove duodenal and

stomach polyps, check for colonic polyps, and to check the progress

inside on his colitis). He's still having labs drawn monthly, but if

they stay normal, I imagine that will change.

What about ?

--Meghan, mom to Wyatt (12yo: UC & PSC 1/07: FAP 8/01)

[Guest guest]

He saw his

> Pediatrican today for bone and joint pains that have increased from

> infrequent to almost daily. The Ped said he'd like to have Wyatt

take

> otc anti-inflammatories for the pains, but will check with the GI.

>

> --Meghan, mom to Wyatt (12yo: UC & PSC 1/07: FAP 8/01)

>

Meghan,

For the past several years I have not been on any meds for my Crohns

disease. During this time I have had to deal with terrible joint and

back pain. One of the doctors I spoke to from UC /Sacramento VA

told me that uncontrolled Crohns and UC can cause much of this joint

inflammation. Now after being on Prednisone for the past several days

at 60mg on a tapered schedule, I have NO PAIN!, anywhere. I can eat

anything, I can get up without supporting myself. I think these

doctors know what they are talking about. I think its going to take

something more than an OTC anti-inflammatories to kill this type of

pain. Non of the OTCs work for me and some like Advil can cause

Intestinal bleeding.

I also see Stanford GIs and have since 96' (no focus on autoimmune

liver disease), it just has not worked out for me in the

Stanford/Palo Alto VA system so Iam switching to Sacramento VA/UC

where Dr. ph Leung(one of the inventors of the Cotton/Leung

stent) resides and the very wonderful Dr.Gershwin Rheumatologist

and Immunologist whose focus is on autoimmune liver diseases, Mainly

PBC but also PSC in some aspects. I toured their lab and gave them my

blood for research.

Keep UC in mind if things dont work out for you at Stanford.

Andi PSC/Crohns 2001/2002 Modesto California

[Guest guest]

> What about ?

--Meghan,

Holy Cricket, but it's taken me a long while to get to

this, Joanne! I'm so sorry. I am beyond backlogged on

both emails (yahoo and aol) and all boards (PSC and my

others) as well. We lost our internet connection for

a month and before that, weren't using it but a

smidge. I'm as late as April for getting in touch

with some people --it's downright embarassing. Wyatt

started having new issues, then more issues, then a

change in one of his diagnoses and a new diagnosis,

and still 'issues' (of course). I've deleted most of

what I've missed, but I knew to look for your answer

to the question I'd left for you so long ago now

--early May. And, maybe I'll see you at 's

house on Saturday for the California PSC meeting? (she

says with hopeful anticipation) --Russ would love to

see you as well.

Okay now for your post...

> Meghan -

> You mentioned that Wyatt's pediatrician talked about

NSAIDs (ibuprofen, advil, etc) for joint pain. I

worry about the effect NSAIDs can have on the liver

(these guys need all the liver protection they can

get!!!). Tylenol, in very small doses, actually helps

very well (1 tablet only for him - his weight is

up to the big 129 on all 5ft 10 or 11 inches of him!).

I'm actually a Nervous Nora about both ibuprofren and

tylenol... and even more. I worry A LOT. And, thank

you.

> 's Juvenile Rheumatoid Arthritis seems to flare

up with much more joint pain if his UC is flaring.

Overall, is OK. Still has way too many crummy

days, with abdominal pain, nausea, and fatigue. But

he is plugging along with school.

I hope his summer is going better with a break from

the pain, nausea, and fatigue. Has he had a break

from it for a nice stretch of time or is it still

coming and going (and coming back again)? How does he

do with it; does he have alternatives for his crummy

days to help him out in some way?

Is he a junior or senior this year? I'm not sure

where his birthday lies to know when he turns 17.

>He did so wonderfully well on last colonoscopy; he

choose to down the phospho soda as a " shot " and found

it easier than diluting it.

Is that the Fleet phospha soda? Wyatt tried that this

June instead of the mag citrate (which he has never

been able to keep down), but did dilute it --and

didn't keep it down.. repeatedly. Maybe when he's a

tad older, he'll be able to do what did. I'm

guessing kept it down, which is great.

>Colitis still active microscopically, but colon

looked much better than last year.

We had the same on the colon with Wyatt in June --the

path came back active colitis throughout the colon,

like 's did and with some 'new things' showing up,

unfortunately.

So, do 's results mean he's feeling good UC-wise?

He isn't having any active UC symptoms right now is

he? (Wyatt's not, other than funky poo)

>Interesting, his GI talked with other peds GI's and

found agreement with the pediatric GI that spoke at

the PSC conference: for pediatric UC, colonoscopy

every 2 to 3 years is fine, for first 10 years or so

of UC. We'll see if other's tend to agree with this?

I'll ask Wyatt's GI what his protocol is for UC

patients and let you know. Wyatt's FAP requires more

frequent scopes, so I don't know what his dr normally

requires for UC. Wyatt was scoped upper/lower in

January and June and will be upper scoped again in

September, plus an upper x-ray/barium this month and

maybe a pill cam next month (upper issues run amok

right now). He won't be lower scoped again 'til next

January. Btw, is the barium x-ray, the stuff he'll

have to drink, nasty like the prep for scopes or is it

'a breeze' like the nurse who set the appointment said

it would be? Have you or ever had to drink it?

I have no experience with it myself.

Once more, I'm sorry I disappeared after asking you a

question on the board.

-Meghan, mom to Wyatt (12yo: FAP 8/01: PSC 1/07 : UC

1/07--Crohn's Colitis 6/07 : autoimmune hives 6/07)

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