Re : Advice for CP person in UK?

[Guest guest]

Hi Rosie,

I'm the " Fliss " Heidi referred to in her post.

Laurie and Heidi have already said so much that is really pertintent

but I may be able to add one or two helpful things or useful info.

Like Sue (also mentioned by Heidi), I am a patient at the Royal

Liverpool Hospital. I live on Merseyside, so, since I have this

disease, it is my good fortune that the Liverpool pancreatic team is

a leading one in Europe, indeed it has a worldwide reputation. The

head of department is Professor Neoptolemos,

pancreatologist/surgeon.

I don't have to travel for my appointments but whenever I go to

clinic, I do meet people who have been referred from elsewhere. Last

week I met a woman from Manchester who had been referred to Prof

because she might well have familial or hereditary pancreatitis and

Liverpool is a research centre for inherited diseases of the

pancreas. I have met others with different pancreatic conditions who

have been referred from other hospitals or their GPs.

Obviously I can't comment on your particular doctors. You may gain

nothing by a move but you are entitled to ask for another opinion.

You can ask for a referral to a particular specialist if you wish.

Sue may be able to tell you more as she was referred to Prof from

Stoke. I'm sure she'll tell you her story when she sees your post.

We have met in Liverpool on a few occasions.

I have had attacks of severe abdominal pain since I was 5 years

old. (Now 59!!!) I have a long and chequered medical history! I

was diagnosed with coeliac disease in 1988 and have to follow a

gluten-free diet. A major breakthrough came in 2003 when I was

diagnosed with advanced CP following CT scan. Since my mother died

of pancreatitis back in 1965, after several years of very severe

illness, it is assumed that I have hereditary pancreatitis. The

pattern of my disease indicates that.

Prof Neoptolemos prescribed high doses of enzymes (Creon in my case)

to help the symptoms and then put me on a careful monitoring

programme. I am involved in a research project at Liverpool but mine

is particularly for sufferers of hereditary pancreatitis. (There are

a number of different lines of research.)

I follow a low fat, no-alcohol diet and I take my Creon. (For me

personally, because of the coeliac condition, the diet is also

gluten-free.) I use Solpadol and Cocodamol for pain relief. (They

are both codeine and paracetamol in different strengths.) My pain is

not as severe as it used to be. This is probably the result of a

combination of factors. I may be almost at " burn-out " point. This

usually takes several years but it does result in less pain. I also

know that, after a few weeks of initial cramps, the Creon began to

have a very good effect and does " rest " my pancreas so that it

doesn't try to do its digestive work any more. (I am aware that this

is not a medically accurate way of describing what is happening!)

For me, with my particular disease and the stage it is at, this

regime does help. Yet another factor might just be that I drink

absolutely no alcohol now. I didn't drink much before but I did

enjoy a glass of two of wine sometimes in the evening after work,

especially over the last four or five years. I think I did often

drink up to the 14 maximum recommended units (weekly) for women. (On

the other hand, I had this disease as a child and young woman when I

didn't drink at all!)

I think diet is very individual although most people find low fat

does help....or, at least, high fat makes it worse. I wouldn't touch

alcohol because it is known to exacerbate all pancreatitis, whatever

the cause. After that, it's trial and error.

It is important to recognise that the disease develops differently

and at different rates in individual patients. I have gone through

many different stages with my CP, with symptoms varying considerably

in frequency and severity over my 59 years!

It would definitely be a good idea to contact Tony Crispin. He has

been a tower of strength to me since my diagnosis in 2003 and we

still correspond by e-mail a few times a week! If you are nowhere

near Liverpool, Tony may have some other ideas. I believe the

Middlesex Hospital has an excellent reputation. Mr used to

be the pancreatic surgeon there and has carried out total

pancreatectomies as well as all the other pancreatic surgeries.

People I know have spoken very highly of him.

Research shows that pancreatic patients do do better if treated at a

specialist unit; that's why it might be worth asking for that

referral.

I wish you luck in your search and an improvement in your health.

Feel free to e-mail me any time you wish.

Good luck,

Fliss (UK)