Creon : for

[Guest guest]

Hi ,

I was prescribed Creon last May when I was first diagnosed

with (hereditary) CP. The gatsro advised that I take 2 x Creon

10,000 with meals but should feel free to take more if needed. He

said he could easily raise that to Creon 20,000 if necessary. He

advised a " low fat " diet without being specific on amounts. At the

same time he referred me to the pancreatic specialist/surgeon in the

same hospital. He wanted me to see various members of the team as it

seemed very likely my CP was hereditary. The pancreatic team at my

local hospital is a leading one in the UK and leads the EUROPAC

research on HP. I had genetic tests as well.

Well, at first I had increased abdominal cramps and I'm sure they

were from the Creon. At the same time I stopped all consumption of

alcohol. (I didn't drink much but I regularly had a glass or two

of wine with meals, especially when eating out.) After a few weeks

the new abdominal cramps stopped. The steatorrhoea was better but

the typical upper-abdominal pains from CP were not. I was working

hard to keep fat consumption down to about 30 grams a day...not easy

if you really count and weigh every single gram as I was doing!

In July I had the appointment with the pancreatologist/surgeon. He

at once increased the dose of Creon to as many as 3 x Creon 40,000

with meals, depending on how much fat and protein is eaten, if I

felt I needed them. (That's pretty well what I take now.) He told

me not to worry so much about consuming such tiny amounts of fat. I

could go higher, with a healthier diet, provided I took the Creon.

100 grams should still be the maximum. The next time I saw the

gastro he also said that around 50 grams of fat a day should be OK.

He said a diet too low in fat would be vitamin deficient. I think it

has something to do with the actual absorption of vitamins.

Soon after that I began to feel a lot better. It wasn't straight

away but by October I was having fewer attacks of pain, they were

less severe and shorter in duration. So far that pattern has

continued. The diarrhoea and steatorrhoea improved dramatically but

it is the easing of the upper abdominal pains as well which is such

a relief. I still get bad days certainly and sometimes I have a

couple of hours of pain in an otherwise reasonable day. I still get

some signs of malabsorption, eg. increased gas, but overall, the

situation is better than it has been for some years. My state of

health had deteriorated again considerably from about 1999 onwards

after an improvement following a dreadful few years in the 1980's. I

suffered from pains reminiscent of my childhood attacks; not as

severe perhaps but much, much more frequent and lasting a long time.

In fact by 2002/3, I was in bad pain nearly half the time. I was

about to give up my job last year when I was diagnosed. I simply

could not continue with the level of pain and the frequency and

duration of attacks. They did not land me in hospital but made the

thought of continuing work seem impossible. I saw life through a

haze of awful pain.

When I do get pain now, I can cope better because I have had the

relief of pain-free time in between. Of course, I don't know how

long this improvement will last. Over the course of my life I have

found it to be a treacherous disease! I now have advanced CP. In

fact, the pancreatologist was very seriously considering a TP last

year, especially given the cancer risk associated with hereditary

pancreatitis. However, since I have responded well to the treatment,

the surgery is shelved for the moment.

With breakfast I take 2 x Creon 40,000. With lunch I take 2 or 3

capsules depending on how much I eat! With my evening meal I usually

take 3. I also get some of my Creon in 10,000 capsules so that I can

take one with a snack if I think I'll need it. I suppose I'm still

learning myself, ! I may reduce the dose a bit if I can still

cope but I don't want to lose the benefits of my present regime. I'm

still able to work and may now be able to continue until next July

which was my original plan. I will then be 59 and I had planned to

retire just one year early. Many teachers retire earlier but I had

hoped to stay on until then as I do love the job. Creon (and a no-

alcohol regime?) has perhaps helped me to achieve this. I'll have to

wait and see over the next few months!

I hope that's helpful but of course, every case is different

as we know!

I also take antioxidants but I only started that recently. The

improvement dates from much earlier.

With very good wishes,

Fliss (UK)