help with what 's the next step

[Guest guest]

Hello everyone. Thanks again to everyone who responds. It's so

nice to talk to people who understand. For those who don't know me

I starting developing recurrent attacks of pancreatiits last Aug.

They've done variety of tests and they figure that my attacks are

related to me having pancreas divisum. The doctors also seem to be

leaning towards me as been developing chronic pancreatitis. I'm off

to Toronto, Ontario to attempt stenting to fix the divisum.

What i want to know is what they will do if the stenting fails?

They already tried once and couldn't get it in. And the report that

the surgeon sent to my doctor states that he thinks that the ducts

looked fine and that he's doubtfult that they could get the stent

in. So what's next? I'm actually feeling a little better today.

These past 3 days i've actually felt like a normal person. But for

the 3 weeks prior it was hell. My lipase is always elevated, it was

at 980 the other week. And I usually have constant pain.

So if the stenting fails are they just gonna leave it? I don't even

think i would be a candidite for surgery cause all tests are showing

my pancreas as fine and no damage. I just don't want to suffer

another 9 months of misery. Thanks again for any suggestions or

advice. Jen

[Guest guest]

I have chronic pancreatitis as a result of pancreas divisum with the

complication of having had a choledochal cyst, which has been removed.

After two failed attempts at placing stents my primary care doc, which

has experience with pancreas divisum from two prior patients, stated

no more stenting it only has cause more harm/injury to the pancreas.

I am very greatful to have a primary care doctor that has had previous

experience with this. My diagnoses is unusual because of the cyst.

This by no means that stenting may or may not work for you. Be very

aware that you may have an attack, post-ERCP pancreatitis, with this

procedure because of the pancreas divisum. Ask them if they can keep

you overnight after the procedure? Your insurance may or may not

allow? For me I went home and two hours later I was back in the ER

after my first ERCP w/stenting.

For any other procedures/surgeries " investigate " them as much as

possible. The only surgery I know of is the Sphinctorplasty(sp.)

For me because of the new plumbing after the cyst removal make any

other surgery extremely tricky. The possibilities for a good outcome

are very poor. So I am now on pain management, diet " enzymes " ,

diabetes management. I just was diagnosed a diabetic after a very bad

attack at the beginning of march.

Walt -- Tacoma,WA

[Guest guest]

Hi Jen,

I think that what you are asking is normal and the answer can be

summed up as " hope for the best, prepare for the worst " .

Hope for the Best: I think that there is a good chance that the

endoscopist will be able to insert the stents. It is a rare patient

that it can't be done on, but it is very dependent on the skill of

the

endoscopist. If the duct is very narrow, he can stretch if first then

do a sphincterotomy then insert the stent. Keep in mind that

there are two broad types of stents that are used. Those that

migrate on their own and those that need to be removed after 6

to 8 weeks. In my experience, stents that are placed for PD

therapy are the ones that need to be removed, the self-migrating

types are used when sphincterotomies are done as a one time

only therapy or when an ERCP is done for diagnostics and the

person is high risk for post-ERCP pancreatitis. PD patients like

us, need the other type because the therapy is to stretch the duct

and the longer they are in, the increased likelihood the duct will

be stretched. And for some people, stenting can be very

effective therapy for managing symptomatic PD. They can

decrease the frequency of acute attacks and lessen pain levels.

However, they are not guaranteed to completely rid you of all pain

and other symptoms. It is mainly a palliative approach to

pancreatitis.

Prepare for the Worst: You have to understand that there really is

no cure for PD. You will always have it. There is no surgery or

other procedure that can connect the main papilla to the dorsal

duct. The hope with stenting is that it will widen the smaller duct

and papilla so they can handle the burden of draining the bulk of

the pancreas. Because this is all very theoretical, the treatment

is controversial. Pain may never be eliminated but it is hoped

that further damage to the pancreas can be slowed or stopped.

However, putting in stents can also be very damaging to the

pancreas. So the cautious patient and endoscopist will

approach this as let's try one stent. If the results are good after

this, then we will try another one. If the results are not good (pain

increases, or stays the same) then it is prudent to discontinue

stent therapy. This is one of those diseases that if your pancreas

duct is obstructed, then stenting is warranted; if the pancreas is

not obstructed then stenting is harmful; but the only way to tell if

the duct is obstructed is to do the stenting. If the patient feels

better then you have determined that she was blocked, if she

doesn't feel better, then she wasn't blocked so further stenting is

not a good idea. So in cases like ours - with symptomatic PD - it

is good medicine to give at least one stenting a try.

Prepare for the Worst Part II: Be prepared that the first few

weeks after the stenting you may feel considerably worse. The

procedure is hard on you pain wise. However, if the block has

been relieved, you may feel considerable and dramatic relief

once the inflammation from the procedure subsides. So do not

evaluate the response until at least 3 to 4 weeks after the stent

has been put in.

Also, if the stents don't work, or are only partially effective, you

still

have options left. If your pancreas is fine, other than the PD and

pain, you are not going to want to consider surgery yet, probably.

That is way too drastic. Why mess with a perfectly functioning

pancreas (other than the pain) and risk diabetes and

malabsorption and all the other things that are inherent with

major abdominal surgery? The best approach is to get pain

management from your PCP and / or pain clinic doctor.

I think that you are exactly in the spot that I was 6 months ago. I

had the first stent put in after a very difficult cannulization: he

did

a sphincterotomy after stretching the papilla and duct (he said it

was the smallest / tightest he had seen in over 2 years) then

inserted a 5F 3 cm stent. I had moderate AP after this procedure

but after 3 weeks was dramatically improved. I went in for the

second stent 8 weeks later. This stent gave me no improvement

over the first stent so he opted not to go on with the treatment.

After I healed from the third ERCP (to remove the second stent) I

was able to re-evaluate my condition. I have absolutely improved

compared to how I felt prior to my first stent but am considerable

worse than I was before I got pancreatitis at all. I am not a

candidate for further stenting as I have decided that the risk of

doing more at this time outweighs any benefit. I am being

managed by a pain clinic doctor by using morphine for 24 hour

pain management and oxycodone for breakthrough pain and

zofran for the nausea. Our goal now, is to attain a reasonable

level of pain control in order to function. I am resigned that I will

never have my old life back...but realize that there are ways to

adapt to this new one. At some point with this disease a person

needs to shift the mind set from " cure " to " manage " . Like a

crippling car accident, CP has no cure but just like the

parapalegic, the CP patient can still have a life by adapting both

the mind and the body to situation that you find yourself in.

So, I think that you can approach this visit with the optimism that

they will be able to do the stents, that the stents will be very

effective but if not there are still options available to you. Just

be

realistic in your expectations.....

Laurie

[Guest guest]

I was just woundering who your Doctor is in Toronto. I'm currently

waiting to hear about seeing someone from McMaster in Hamilton. To

see if they can figure out what is causing my panc pain. Iwas was

surprised to see a local city around me mentioned. I'm from Niagara

Falls.

Thanks for any input.