Pancreatitis

[Guest guest]

" they found through ERCP that my spincter of oddi pressure wad too great so

they snipped it to loosen it (don't know medical term). They also

did something minor to one of the ducts. I only had a temporary

stent that they took out in a week when I got home. "

Hi Debbie: I copied part of your message because it could have been my

story. They did a sphincterotomy (sp?) on me and put in a temporary stent

(became clogged in 10 days). That was a year ago, and unfortunately I have

had almost constant pain since then. I am so afraid that I am becoming

dependent on the narcotics. Because I really have a hard time functioning

comfortably without them. It really scares me, and then gets me kind of

depressed. I am checking into finding a counselor or someone to talk you.

I get so frustrated because even my friends have a hard time understanding

what it is like living with cp. Though I explain what's going on, a few

months later they'll say, " you're still sick? I thought they fixed you. " I

could just strangle them, I get so mad. I seem to have alot of anger

lately, and don't know why. Anyway, I'm sorry to go on, caught me when

things aren't going so well. Seems like I try so hard with my diet and

enzymes, but the pain continues. No matter how hard I try I can't seem to

control the pain. By the way, they took my gall bladder out, and that's

when the pain got worse. My pancreatic duct was clogged with sludge. I'm

afraid it might be clogged again. I have an appointment with my doctor at

's Hopkins in May...so I'm just holding on till then. I have really

found support by reading all the messages, and chiming in occasionally. I

hope you are having a good day.

Robin

[Guest guest]

Debbie,

I had my gallbladder removed, even though it looked fine. I

had surgery to try to correct a pancreatic divisum (divided

ducts) and they decided to remove the gallbladder at the

same time, just in case it was the problem, even though it

looked just fine (No stones, no sludge and functioned

properly).

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.

[Guest guest]

,

That is so sad that your brother's wife has Pancreatitis. But, you are so

right, that it probably took this for him to have a clue what your family has

been going through. Be sure and give her our website address,

<A HREF= " http://www.pancassociation.org " >http://www.pancassociation.org</A>

Regarding the problems with posting, many people go to the board to read

post, but write posts from their own mailbox. The address to send posts to is:

pancreatitis

You wrote, " when I click on post, it keeps saying my message has been posted

and takes me back to the last message I opened to read " That is how the

procedure works as far as bringing you back to the last message that you read. "

Karyn E. , RN,

Exec. Director, PAI

*http://www.pancassociation.org

[Guest guest]

Hi All,

I need some help from the experts of Mito. (4) is stuggling with pancreatitis. His amylase was 201(High nl 88) on Tuesday and is now down to 158. Have any of your kids stuggled with this? He had one other bout with this 2 years ago but the highest his amylase went was 99. He has cyclical vomiting and multiple other issues. He has an OXPHOS defect and possibly a secondary Long chain fatty acid oxidation disorder. He has suffered no abdominal trauma. His pediatrician called his Mito dr who feels it is a result of the Mito. He said it is a very serious finding and will need to monitored very closely. Any ideas greatly appreciated!

Tammy

[Guest guest]

Hi Tammy,

Our son has had two boughts of Pancreatitus both

unexplained. We opted to totally discontinue feeds as

any time they tried even 5 cc/hr his levels increased.

It took three months or more each time to get his

levels back to normal but he was home and TPN fed the

entire time. We still do not understand why the

pancreatitus occurred but that is the best treatment.

We slowly began tube feeds and decreased the TPN over

those months as well. Good luck getting control of

this and hope your son feels better soon.

Kimberley

--- Tammy dtmartin628@...> wrote:

> Hi All,

>

> I need some help from the experts of Mito.

> (4) is stuggling with pancreatitis. His amylase was

> 201(High nl 88) on Tuesday and is now down to 158.

> Have any of your kids stuggled with this? He had

> one other bout with this 2 years ago but the highest

> his amylase went was 99. He has cyclical vomiting

> and multiple other issues. He has an OXPHOS defect

> and possibly a secondary Long chain fatty acid

> oxidation disorder. He has suffered no abdominal

> trauma. His pediatrician called his Mito dr who

> feels it is a result of the Mito. He said it is a

> very serious finding and will need to

> monitored very closely. Any ideas greatly

> appreciated!

>

> Tammy

>

>

[Guest guest]

Tammy,

I am sorry to hear that is struggling with pancreatitis. I

found a reference to recurrent pancreatitis in CPT II deficiency.

Take care,

: J Pediatr. 1994 Jun;124(6):938-40.

Related

Articles,

Links

Carnitine palmitoyltransferase II deficiency: a

new cause of recurrent pancreatitis.

Tein I, Christodoulou J, Donner E, McInnes RR.

Division of Neurology, Hospital for Sick Children, Toronto, Ontario,

Canada.

An

18-year-old female patient had a history of recurrent pancreatitis

after prolonged periods of exercise coupled with a high-fat diet at the

ages of 12 and 15 years. After the onset of recurrent myoglobinuria

when she was 16 years old, deficiency of carnitine palmitoyltransferase

type II (32% residual activity) was diagnosed on the basis of cultured

skin fibroblasts. We conclude that deficiency of carnitine

palmitoyltransferase type II may be a cause of pancreatitis and should

be considered in the differential diagnosis, even in the absence of

overt myoglobinuria.