To Kris re : Need to vent

[Guest guest]

Hi Kris,

I'll try to share a little experience with you. It may or may not be

helpful but at least I'm listening to you!

Every case is different and the causes of CP, as well as the types

and extent of damage to the pancreas, are many and varied, therefore

the therapies vary in their type and efficacy. For me, Creon has

been very effective in controlling both lower-abdominal symptoms of

malabsorption (pain, gas, diarrhoea, steatorrhoea, bloating etc.)

and the crippling upper-abdominal pain caused by inflammation of the

pancreas itself. Heidi has just posted a very interesting article

on enzyme therapy and pain management. I'm sure you'd find it

interesting.

My CP is hereditary....I've had symptoms since the age of 5 and am

now 58!.....and the incontovertible evidence appeared in a CT scan

in 2003 as atrophy and extensive calcifications throughout the

pancreas. All my life I had attacks of very severe pain and in the

1980's, the same attacks of pain but now also with steatorrhoea and

diarrhoea which became virtually constant by 1988. I then had a

diagnosis of coeliac disease whilst tests for pancreatic disease

seemed negative. The gluten-free diet, also supplemented by a

lactose-free diet definitely helped me considerably but did not

completely " cure " me. (I was advised a lactose-free diet by my then

gastro because some severe cases of coeliac disease also have

difficulty in digesting lactose because the condition can destroy or

impair the ability to produce lactase which is the enzyme which

digests lactose.)

Attacks of severe upper-abdominal pain gradually became more

frequent and more prolonged in the late 90's and up to 2002,

although with less dreadful diarrhoea than in the 80's. I was still

following religiously the gluten-free and lactose-free diet. From

Dec. 2002, tests on the pancreas began again, thanks to a very young

female doc who was standing in for my gastro one day at the hospital

clinic. She really LISTENED to me and initiated the series of tests

which culminated in my definitive CP diagnosis.

Well, my pancreatic specialist to-day says that he believes the

coeliac diagnosis was probably incorrect in 1988 as I definitely

have CP which explains all my symptoms, but he is not 100% certain.

I am not sure at all. Although my symptoms have improved

significantly since I started the Creon/low-fat/no-alcohol-at-all

therapy, I still do have symptoms so it is difficult, in

this " patchy " situation, to be sure if reintroducing gluten causes

problems or not. I have decided to wait until the summer hols (I'm a

teacher) to conduct a prolonged experiment on this. My suspicion is

that I still do better on a gluten-free diet but I have definitely

been able to reintroduce lactose (low-fat cheese etc.) without ill

effects.

Naturally, I am VERY interested to meet someone who may also have

both CP and coeliac disease.

Kris, I know I haven't said anything terribly helpful but I do

sympathise. I was frightened to find I had CP. However, I'm sure you

will find ways of managing the condition reasonably and improving

your sense of well-being. I know little personally about sandostatin

but I know some patients who consider it a wonder drug. I expect

someone with direct experience of it will tell you more and you can

research it on the net as well. I hope that Creon will help you and

that you will gradually come to terms with your condition. It is a

shock to receive the diagnosis, I know. I was there this time last

year. This site meant a great deal to me and helped me through the

following months. It still is. The support you will receive from

people here, together with the information, is outstanding.

Try reading the article Heidi posted; it is very helpful and

informative.

With very good wishes and kind thoughts,

Fliss (UK)