For

[Guest guest]

Hello ,

I'm sorry to hear about your mother and I hope things will improve

very soon. Of course your family will be in my prayers.

I have hereditary pancreatitis. Genetic testing can be done.

Pittsburgh is a big testing centre in the US. First of all you need

to discuss this with your specialist. He or she may not think it's

HP; that will depend on whether or not any other specific cause for

your CP has been found. Usually, not always, HP results in symptoms

early on in life, often in childhood. There could also be a cause

such as pancreas divisum which could dispose people to pancreatitis.

I'm not sure about this, , but I think that may sometimes be

inherited also, in which case it might have disposed both of you to

pancreatitis without you having HP as such. You will have to check

this out with an experienced pancreatologist.

Back to testing. The gene mutations which cause HP were only

discovered in the 1990's. Even to-day, 20% of HP cases are caused by

mutations which haven't yet been discovered. Of the 80%, the

majority of cases are caused by one of four genetic mutations.

Pittsburgh tests for these clinically and will give your doc the

results. I'm not sure about the American medical insurance system.

Maybe your insurance will pay. If not, it costs $50. I have had

these tests done here in the UK. I haven't got one of the four

common gene mutations. However, my pancreatologist is still 99+%

certain that mine is HP because of my history and that of my mother.

He says we follow a typical pattern. He is a very experienced and

distinguished pancreas expertso I trust his judgement. I still have

to have tests for the rarer mutations. If they are negative, the

assumption will be that I belong to the 20% whose gene mutations

haven't yet been discovered. So far my sons obviously cannot be

tested because there is no known mutation for which to test them.

I sympathise and I can imagine how shocked you are at the

moment, both for your mother and the possible implications for the

family. I believe me, I went through all this last year when my own

CP was finally diagnosed. I am 58 and have had symptoms since the

age of 5. I understand all your feelings at this moment. Please do

keep in touch.

Please try not to worry although I realise this is easier said than

done. In fact, HP, like any other CP, follows many different

patterns. Some people have few symptoms. Others are more seriously

affected. In any case, you do not yet know if you have the

condition. Do you have a good pancreatologist? If not, I think it's

wise to try to find one. HP is even rarer than CP as a whole, which

is already rare, so having someone experienced specifically in

pancreatic diseases is sensible, indeed, in my personal view, vital.

The scientists and docs are still at an early stage in their

research. (BTW, Pittsburgh is recruiting right now for people with

possible HP to take part in a research project. Dr Whitcomb

leads the team there. They've accepted me for the study.....just to-

day....and there's nothing to do other than answer questions by post

and give blood for testing. I'm also part of the EUROPAC study which

is based here in Liverpool, UK.)

Please feel free to talk about this at any time, . You will

need to. I hope your mother is already feeling better. Are they

certain she has acute pancreatitis? Has she had pancreatitis

symptoms before? Please keep in touch.

Good wishes, prayers and kind thoughts,

Fliss

[Guest guest]

Hi ,

You asked if removing the pancreas is a good idea. I think it has to be a very

individual decision, based on how CP is affecting you. For me it has been a very

positive experience. Prior to having my surgery i was having frequent attacks,

and spending a lot of time in hospital. My husband was having to take time off

work to look after the children, so it was disrupting the lives of the whole

family. Now, even though i have diabetes, i feel that my quality of life is much

improved. In fact, i don't know where i'd be right now, if i hadn't had the

surgery. If you think it might be an option for you, my advise would be :

1. Get the opinion of a specialist pancreatic surgeon.

2. Ensure you look at all the options that are available for your particular

circumstances.

3. Removing the pancreas doesnot guarantee that you will be painfree (something

to do with the nerve involvement), although, for many people, their pain is

improved.

4. Once you have all your information, take time to make the decision that is

right for you.

Remember, that it is major surgery, often involving a stay in intensive care,

and, as for all surgery, there are risks involved. These depend on your

individual circumstances, and something which you need to discuss with your

surgeon.

If i can help with any more information, please contact me.

Best wishes,#

Sue

> Message date : Feb 17 2004, 06:27 PM

> From : " brenda Kwas "

> To : pancreatitis

> Copy to :

> Subject : Re: for Sue

>

>

>

> hi sue, im a 30 yr old...diagnosed with pc three yrs ago...thinking back had

> my first attack when i was 14 yrs old...but didnt really start back until

> 2000...anyways..does any one or do u know if removing the pancreas is a good

> idea plz tell me the pros and cons...feeling worse and worse everyday....

>

> gratefully brenda

>

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[Guest guest]

Hi I had surgery at ssf also but i had dr gorrin who since moved away, dr li though did remove my staples. I think your nausea will pass, there are lots of adjustments to what is going on with your body now, I remember when i could first eat scrambled eggs i loved them like a steak or something and now at a year out, i can barely eat a scrambled egg it doesnt agree with me but a filet mignon steak works..........its all a new world out there. i do not know how to instant message exactally but people find me and then it works, so if you see me online sometime maybe we can chat. Congrats on your success thus far colleen vacaville wrote: Hi I'm from Sacramento, I am 3 weeks post-op RNY Lap performed by Dr. Li in SSF. My pre-op weight was 273 and

I'm down 28 pounds. Please anyone feel free to contact me on yahoo messenger. Right now the only battle I am having is trying to eat, I am on Stage III part 1 and everytime I get near food I get an overwhelming sensation of nausea...has anyone felt this way? I'm hoping it will pass...

Colleen