The Pancreatitis Supporters' Network
The Pancreatitis Supporters' Network
You are here: Newsletter 9
November/December 1995
As promised in earlier Newsletters we now have copies of the booklets produced
by Duphar/Mr Bruce Faulkner-Dunkley and written by Professor John Neoptolemos.
I am sorry there has been such a long wait for them but as they say better late
than never!
In order to offset the cost of distribution I am going to have to ask that you
send in an order form and cheque or coins taped to the order form for however
many of the booklets you want.
There are three booklets and these are entitled:
Chronic Pancreatitis
Acute Pancreatitis and
Cancer of the Pancreas.
If you want copies send in a total of 1.00 towards the cost of postage,
packaging and distribution.
To date over half of you have responded and thank you to those who have enclosed
messages of support.
I am sorry to make this charge but we only have at present about 85 to
last us until next April. More
members have rejoined, others joining for the first time and our membership is
up to over 55 from the last newsletter.
Sadly,
people who have a one off attack get the same amount of information and support
that anyone gets when they first ring and often after this they do not join
despite getting a newsletter and follow up letter which I hope you have all
received when you first contacted the Network.
The Lottery
On a more positive note I have applied for Lottery funding and will let you all
know the outcome of this. At
present we have been told we will not hear of the outcome of our bid until
December. I have applied for a
total of 3,000 over three years to fund an independent telephone support line
for
members.
The Pancreatic Society of Great Britain and Ireland
We also have to thank the Pancreatic Society of Great Britain and Ireland for
their most generous donation of 250 to be spent on Office Equipment and this
has enabled us to purchase a decent hard drive in anticipation of our membership
drive! My problem has been the
inability to get all the software on at the same time due to lack of space!
Indeed if I did not have access to this type of equipment I could not
produce the Newsletters or more importantly the requests for money and support
from other Companies.
Fundraising
In addition I have a contact in another charity helping me sort targets for
fundraising letters and I will let you all know how this develops.
It is my ambition that the charity will become self supporting some time
in the distant future and that we can help everyone without having to worry all
the time about costs.
Car Boot Salee
I have asked the membership in the past for assistance and have heard
nothing and matters, to be honest were getting worrying!
Imagine my delight at the member - who wishes to remain anonymous - who
completed a car boot for the Network and brought in 52!
This gave me the resource to be able to write to Companies for support.
All I can say is Joan really started something with her letter questioning
members on diet and due to the number of responses I have had I am devoting this
next page or so to responses from members over the whole area of diet and foods.
In order to save having to get each article verified by the author before
printing I have left peoples' names off.
Here we go extracts from members letters:
...Except being told to eat no fat where possible or keep it down to 2.0g in any
product (or below) and no alcohol of any sort and dairy stuff to be skimmed or
non-fat or none at all, I was not given any more advice.
I have found out for myself, just recently, and often after such a lot of acute
pain, that the following foods were obviously not helping me one bit and causing
years of pain.
This may be helpful news to other members if included in the Newsletter to come
- I leave you to decide how to present it.
1) I cannot digest any salad food and have not eaten any this Summer (a few
tomatoes if boiled and de-skinned)
2) I cannot digest any citrus fruits or had any fruits - apples etc and just
occasionally raspberries, strawberries etc.
3) All vegs are OK so long as they are cooked (never raw) and I eat a lot of
every kind.
4) I buy tinned soft fruit (mangos are super) and find this I can cope with -
supermarkets selections are not too expensive and it is all fruit and no peel,
skin and pips - which are no good to me!
...I am OK with all meats, fowl and fish cooked any way and even bacon grilled
and the odd oven chip!
I am taking in a bit more fat like biscuits, cake, chocs, semi-skimmed milk and
yogurt etc (but only once a week).
I think Sanatogen powder, Glucose powder and Luctulose are doing me a lot of
good!
__________________________
Yes, I cannot eat any Dairy food only perhaps once a month, very little, check
when weekly shopping you do not buy any food containing cheese sauce, or sauces
of any kind (very fat). I always read labels on the back of packets etc, if it
contains more than 4g fat put it back.
Make your own soups, hot or cold with lots of Pasta, Veg, sometimes
fruit. No cakes or goodies from
sweet shelf, but in-between have a go at different cakes as a filler.
______________________
Mrs A P Paddock - Yes! This is me
also! Have for 7 years been on
non-fat or low-fat food:
Skimmed milk
Low-fat yogurt
No cheese, biscuits, cakes, chocolate, fat meat, suet etc.
Had to be brain washed to read every label on everything and if it was above
2.0g fat content, don't buy it or eat it!
___________________
I thought the enclosed might be of interest to your members who, like me, have
to limit their fat intake from all sources. to no more than 50g per week (see
next section - Editor). I
tried them and found they enlivened a salad and they contain 1g per 100g instead
of the normal 24-30g. I wrote to
the manufacturers to get to know more about other items in their low fat range,
also supplies.
(Response to above letter below - Editor)
_____________________
THE LOW FAT SNACK CO
1A Standard Road
London
NW10 6EX
Tel 0181 965 8687
Thank you for your recent letter regarding our low fat snacks.
.......The 99% Low Fat Potato Waffles were launched by SAFEWAY.
.....The BOOTS stores will be launching two new products in the middle of
October which are called 'Shapers Very Low Fat Pizza Pieces' and 'Shapers Very
Low Fat American Waffles'.
......Another product is called 'Pasta Snacks' (which is 50% lower in fat than
normal crisps) and we currently supply to some of the SAINSBURY'S stores.
.....WAITROSE have a similar product called 'Spicy Tomato Pasta Crisps'
and 'Garlic and Herb Pasta Crisps' and ASDA also have a similar product called:
'Italian Style Snacks' - which are under their own respective labels.
...Unfortunately we cannot supply direct to the public.
___________________________
How can
I modify
my diet
and daily activities
to help treat pancreatitis?
The single most important change that any sufferer from chronic
pancreatitis can make is to stop drinking alcohol.
Even if your pancreatitis is not directly caused by alcohol, it is likely
that drinking alcohol will harm the
pancreas because it stimulates the
production of a thick, sticky pancreatic juice which tends to clog the
pancreatic ducts. This adds to the
drainage already taking place in the pancreas.
It is
probably also
helpful to stop smoking,
because smoking stresses
the body's
natural defense
mechanisms against
inflammation and may contribute to the damage occurring
in the pancreas.
A well balanced diet is probably helpful.
You need not restrict fatty food
and in fact
an adequate intake of fat
may help
to prevent weight loss.
If you have access to a
dietitian, you should ask for advice on how to maintain an intake of 100 grams
of fat and 100 grams of protein each day.
If this diet causes symptoms such as diarrhoea or looseness of stools
it is better to begin or increase the dose of pancreatic enzyme
supplements rather than to cut down the amount you are eating.
Can vitamin supplements help?
There is some evidence that antioxidants help to protect against
inflammation in
a wide
variety of
diseases There
are many vitamin
preparations with
added antioxidants
available from chemists
and Health
Food shops.
These preparations
will certainly do no harm, and some patients find their pain is less
severe or less frequent when they are taking them.
Look out for formulations which contain vitamin C, vitamin E
and Selenium .
(Reprinted article from the Pancreatic Society of Great Britain and Ireland -
Editor)
Firstly a big thank you to:
Andy Whyment of the
Mobility Advice Line.
I mentioned in previous letters about my getting help with Fundraising for the
Network and sending out letters to Companies and Charities with requests for
support. Well Andy has been my
information source and assistance in drafting an appropriate letter to the same.
I will report back to you all on how well we are doing in the next Newsletter,
due March/April 1996.
___________________
Causes of Pancreatitis?
I have had a couple of interesting calls about what people have been told
caused their pancreatitis from:
Mumps, Severe blow to the pancreas, Scorpion sting, heredity etc.
What about you?
Write
in and tell us.
______________________
Remember we advise you always to consult with your GP over any medical problem.
Many thanks to Mr Bruce Faulkner-Dunkley of Duphar and Professor John
Neoptolemos of the Pancreatic Society of Great Britain and Ireland for their
work and support in the production
of the booklets. Also the PSGBI for
their generous donation of 250 for Office Equipment.
Benefits Information
I have access to a computer package that will enable me to tell you what
benefits you may be able to apply for.
If you want a consultation on this please give me a ring for a
consultation in COMPLETE
CONFIDENCE!
NOTE:
You need to supply information on what income and outgoings you have,
rate of mortgage interest (if you have one) and amount of mortgage, also Council
tax information and what benefits you are getting at present.
At the end the program will generate a report which you can use to assist
getting benefits. If you are
interested give me a call for further information
_________________________
Drug information
Zydol Capsules. I was asked about
the following and had to wait until our latest copy of MIMS to get this
information: Opiate analogue.
Tramadol hydrochlor. 50mg green/yellow capsule.
Used for moderate to severe pain. Not recommended for CHILDREN.
DLA &
AA
Have you been turned down for DLA (DISABILITY LIVING ALLOWANCE) ,
or AA (Attendance Allowance?
If yes, can we help at all?
Remember you have the right to Appeal and this you should do straight away
asking for a copy of the notes used to make the decision.
DO THIS IN WRITING. Then
ring us up to discuss how you should fill in the Appeal for DLA or AA.
We cannot guarantee success but we may help you to have a better chance.
While you are waiting for the papers from the disability section you
should ask your Consultant or GP for a DS1500 report to send with your Appeal.
RING for further information.