Kris

[Guest guest]

Hi Kris,

Just a final word before I go off! I do hope your probs are already

imoproving somewhat.

First, the TP. As Chrissy says, brittle diabetes is the problem

following TP, unless you have a successful ICT. That also depends on

how many islet cells you have left. You need a lot! (Can't remember

the exact recommended number but many CP patients, by definition,

may not have a lot because they have a diseased pancreas anyway!)

Of course, this is the way forward, I think. I hope more and more

hospitals will adopt this approach as time goes on. Mine doesn't do

the ICT at the moment but has a good TP record.

Secondly, the enzymes. The way they can help the actual pancreatic

pain is by " resting " the pancreas. This pain is the one usually felt

in the upper abdominal area, maybe going all round or through to the

back. The effect of the enzymes is therefore more long-term than a

simple pain-killer would be as their function per se is not actually

to stop pain but to ensure that good digestion takes place instead

of malabsorption.

Whether or not you need them specifically for digestion depends on

whether or not your pancreas is still producing enzymes of its own.

The other type of pain is the pain associated with the malabsorption

itself. For me, this means pain, gas, bloating, steatorrhoea,

cramps, gurglings etc. These are generally felt mainly in the lower

abdominal area, at least, in my experience. By helping to stop

malabsorption, enzymes can help with these symptoms.

Heidi has said everything significant about the dangers of

malabsorption (if you have this) so I won't repeat them. What she

says is so important! I'm sitting by the phone waiting for a call to

give me my appointment at the metabolic clinic in my hospital. This

is because I have osteopoenia which is the precursor to

osteoporosis. I can't prove it but I feel sure this is the result of

many years of malabsorption caused by undiagnosed pancreatic

disease. At the last count, 18 months ago, my average bone density

was 80% of what it should be for a woman of my age. It could be a

lot worse by now. So it is worth thinking about whether or not your

CP is causing malabsorption. Have you discussed this with the docs?

Sorry if you mentioned it and I've forgotten!

When I first went on Creon, it gave me ADDITIONAL cramps in the

lower gut as I got used to it. It did nothing for the horrible

pancreatic pains either. Then, after about a month or so, it began

to work. I just couldn't manage without it now. It stops the

diarrhoea/steatorrhoea tendency

about 95%, from what I can judge. For me personally, it has improved

all types of pain associated with this disease, including the awful

upper-abdominal pains. My attacks are now less frequent and less

severe. I also hope it will help to slow down the osteoporosis

process.

My gastro first prescribed 2 or 3 x Creon 10,000 per meal,

increasing dose if I needed to. He referred me to the

pancreatologist at the hospital. He increased my dose considerably.

I now take 3 x Creon 40,000 with a meal and 1 or 2 x Creon 10,000

with a snack. This is a very high dose (but some patients are on

higher) but I have very advanced pancreatitis and Prof thinks my

pancreas is producing little or nothing of its own digestive

enzymes.

Creon does work very well for me but it took time to do so and has

not effected a 100% " cure " of symptoms but certainly a significant

improvement.

Just thought it might be worth mentioning this!

Take care.

With very good wishes,

Fliss (UK)