Advice for CP person in UK?

[Guest guest]

Hi,

Thank you all - I am so glad that I have discovered this list!

I have had numerous episodes of severe abdominal pain ever since 1989/90

(including one that was diagnosed as acute pancreatitis). Most

recently, in January, I had another bad abdo pain attack, was given the

diagnosis of CP in March and am now at home on (up to 360 mg / 24hr )

Oxynorm/Oxycontin for pain relief and am waiting for promised referrals

to our local Pain Clinic and Dieticians. I can't work properly and feel

" abandoned " .

I need to find some direction in coping with this condition and my

situation. So I am asking your guidance. Can you help? Please?

My hospital physicians are hepatologists - and while they have

diagnosed my condition and agree that I am genuinely unwell and in pain,

but they don't seem to be able to offer me anything exept uncertainty.

My G.P. is very much in awe of these internationally renowned experts

and has not been encouraging about the prospect of my finding anyone

better able to help. In the meantime, the message from my hospital and

GP seems to be " get used to it and make space for someone we can cure " .

I am lucky in having a supportive husband and understanding employer so

things COULD be a lot worse. But I want them to be a lot better!

This group seem to have had a real mix of experiences - so here's some

questions. Am I being unreasonable in hoping for a way forward? Indeed,

IS there a way forward with this condition? I've not been offered

surgery (I'm not sick enough) and as a long-term vegetarian I am used to

living on a very low-fat diet (IS there anything better?). Should I be

looking for second or third medical opinions? Would it do any good to

see someone else?

Thanks for your time

Rosie

[Guest guest]

HI Rosie,

Welcome!

I think I can try to answer some of your questions based on my

five year experience with my type of chronic pancreatitis.

I have symptomatic pancreas divisum that was made that way by

a surgery that went bad. It took three years of doubt, suspicion,

mis-information and neglect on my physicians part before the

diagnosis was figured out. I have run into my share of

" scumbag " doctors and am trying to tone down my cynicism into

a more healthy type. So my first response to your statement

about feeling abandoned makes me say - " of course, that is

natural for our esteemed physicians. " But to be fair to them,

there really isn't any cut and dried " cures " to offer. It is mainly a

disease of managament: that is, you treat the symptoms as the

occur and minimize the times that they occur. It is a very

frustrating disease for both patients and physicians who care.

For physicians who don't, it is easy for them to abandon you.

They rationalize it by minimizing the affects: by either telling you

that you are imagining things, exagerating your pain, or that you

have been miraculously cured by something they did and all your

troubles should be gone.

The way forward with this disease is to find a doctor who is

willing to treat the symptoms without being too caught up in the

reason why they are occuring. Basically what I mean is if a

fixable cause has been ruled out, a good doctor will then

concentrate on improving your quality of life. That may mean

referral to a pain management doctor, physical therapy, etc. But

at the least, if you have pain, you need assurance that this

symptom will be addressed for as long as you need it. If you

have nausea, anti-emetics should be given and so on. You also

have to remember that this disease cycles. There are good

hours, days, weeks, months and even years between the bad

times. So what you feel today, may not be what you feel

tomorrow. For me, that is what keeps my optimism hovering in

the background, even if it is not always outright expressed.

Basically your diet is pure trial and error. Drinking alcohol is

about the only absolute no-no and some doctors even downplay

this if your CP is not alcohol related. But enough anecdotal

evidence seems to support the no-alcohol rule. Low fat, low

protein diets also seem to help but this has no fast rule. Some

claim that eating smaller meals more frequently limits the pain.

Enzyme supplements can help as well as other meds that

address the gastroparesis that is associated with CP as well as

many, many others. I have been a vegetarian for the last 20

years or so and to be honest, it helps some I guess as protein is

my biggest no-no but I cannot point to any cause and effect of

what I eat and how high my pain levels are. Physical activity

also seems to aggravate the pain.

As far as invasive treatment options available...it all depends on

what the cause of your CP is and how advanced it is. Stenting

and sphincterotomies are available if the doctors think the pain

is caused by blockage in the ducts. Surgery is also an option for

blockage depending if the CP is " small duct " or " large duct " type.

But for the most part, medication, lifestyle changes and

non-invasive therapy are the things most commonly offered.

Seeking second, third or more opinions is most likely a good

thing especially if you can get them from other specialties (that

is, a specialist that approaches pancreatitis from a medical point

of view versus a specialist that sees pancreatitis from a surgical

point of view). It also helps if you can see someone that is not

associated with the same hospital or group of a doctor / surgeon

that you saw before. Oftentimes, physicians within the same

organization have the same point-of-view or they are unwilling to

disagree with a colleagues opinion (because of the politics

involved). So if you can afford it, getting two opinions (or more)

from a pancreatologist in a gastroenterology sub-specialty and

getting two opinions from a pancreatic surgeon would be ideal.

However, keep in mind that the state of the art in regards to

non-malignant pancreas disease is pretty much in the dark ages

and you may find either very superficial recommendations /

opinions or extremely conflicting ones. In addition, there seems

to be a turf battle between GI docs and GI surgeons so you may

hear from the GI docs that stenting is your only option and to not

consider surgery and then from a surgeon the opnion that

stenting before surgery only ruins your chance to have surgery at

a future date. When this happens, making a decision can be

difficult (to say the least). But, gathering the information will at

least offer you some control over the situation I think.

Hope this helps some, may be too much information for now but

for some reason this is what came to me all at once.

Laurie

[Guest guest]

Hi Rosie; I am sorry that you had to seek us out but you will find that

this is one of the best group of people I have ever met. They are very

supportive and knowledgable as well as loving. I feel that I have made

many life long friendships here and in all honesty I dont know how I

would have dealt with this disease without their assistance.

How far are you from Liverpool? The reason I ask is that one of the

worlds formost pancreatolgist is at the university there. His name is

Dr. Neops; which is short for some long Greeks name I believe. Several

members of this board see him and speak very highly of him and his

staff. He is very approachable from what I understand and if that is

too great a distance for you to travel I am sure he would recommend

someone nearer to your home.

Please feel free to ask any questions or make any comments you wish, we

are all very open and honest here.

Warmly,

(USA-South Carolina)

[Guest guest]

Dear Rosie,

You've already had some excellent advise from Laurie, to which I don't

think there's much I could add at all, except to say that you

shouldn't ever give up hope, or expect that things won't get any

better than they are today.

Unfortunately, your beginning with CP brought about some pretty

apathetic and incommpassionate advice from the medical staff who

treated you. I'm sorry for that, but it does happen, and it will be

up to you to keep searching for a physician or two who have a better

understanding of chronic pancreatitis and who are willing to treat you

the way you deserve.

We have two other female members in the group who are from England,

Fliss and Sue, who will surely chirp up with some good advice for you

as soon as they see your post. Not knowing where you are in reference

to where they are, they may be able to provide you with some names of

reputable specialists in the UK that could help you. You may also wish

to contact our UK Country Representative, Tony Crispin at:

crispin@crispina@...

He may have more information for you, or some good references that

could help you out.

Both of this women have experienced different histories with chronic

pancreatitis, and both have considerable experience and tips which I'm

sure you'll find useful.

Most of us do adhere to the low fat diet and have found ways to make

this style of eating most palatable. The diet, along with enzyme

supplements, pain medication, and appropriate vitamins and minerals

have done much to help make life better with CP. As Laurie said, many

of us have found that we've had to curtail much of our activity and

change our lifestyles to a more moderate pace. The transition is

enough to require adjustments that need to be understood by our family

members, friends and employers. If your husband is supportive of

these adjustments and considerate of your condition, you'll see that

it makes your life tremendously easier and his understanding will be

of much comfort to you.

I haven't offered much other advice because Laurie already covered

most of what I would have said in her earlier letter. If there's

anything else that you can think of that you may have any questions

about, remember that no question here is too small or too stupid.

You're facing a difficult learning curve, just to get yourself

started, so remember that we've all been there at some time. We're

here to help you in any way that we can.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina Rep.

South Eastern Regional Rep. PAI

Note: Any comments or advice are based on personal experience or

opinion only, and should not be substituted for professional medical

consultation.

[Guest guest]

Hi Everyone,

MANY thanks for your feedback and very helpful suggestions. I no longer

feel quite so isolated and alone with these problems. I intended getting

back to the group sooner to say how much I appreciated your input but

I've had a tough few days.

I showed your replies to Philip (my husband) and he really found them

helpful. And I've found it helpful to show him that I am not the only

person with these problems. I don't know whether I have been especially

unlucky with my medics but they have often given the impression that

they don't consider my complaints as being especially serious and (like

so many of you in the group) the treatment of my pain has been

ultra-cautious, massively condescending and frequently colored by

disbelief. I'm so glad that Philip has been willing to trust me and my

whingeing despite my having such minimal corroboration from the " experts "

I've been waiting since February for an appointment at the hospital Pain

Clinic. On Friday I heard that I had just been placed on their 16-week

waiting list. It seems that letters from my doctors have been forgotten,

misdirected or misplaced. I am in the process of kicking-up a fuss

(this mess has contributed to the toughness of the past few days). The

UK NHS is a wonderful idea - it's just a very creaky institution.

Thanks also for the suggestions about diet. I've been completely off

alcohol since my first acute pancreatitis episode (9 years ago). I've

not been put on any supplements as yet and don't know what criteria the

medics use in order to decide when or whether they are needed.

The prospect of getting a 2nd specialist opinion appeals to me very

much!! I live just outside Cambridge so travel to Liverpool would be a

bit tricky. My GP will refer me privately to anyone I name (though he is

in awe of the Addenbrooke's team and implied that I would be wasting my

time and money). Travel or staying in London would not be a problem if

there were anyone suitable there! If anyone can make a suggestion please

feel free to contact me off-list.

I don't know whether my case would interest anyone from a research

perspective - the cause of my CP is obscure. There's no family history

and I don't have a history of alcoholism or gall stones. I did drink

robustly at one time in my life and I certainly exceeded the safe limits

on occasion.

Thanks again to you all for your support - I hope I can do the same for

someone else in the future

Love

Rosie xxx