Pancreatic stone removal surgery

[Guest guest]

Hi Mehmet,

I'm so sorry you have this worry. Your wife's condition seems to

have developed a bit like my own in that she used to have

occasional bouts of abdominal pain and then later on, diarrhoea and

more constant pain developed. I'm sure she will find the Creon

really helpful, especially if she takes a high dose. She needs to

discuss this with the consultant. The thinking today seems to be in

favour of higher doses than were previously thought adequate. My

pancreatologist recommends up to 4 or 5 Creon 40,000 with a full

meal and some of his patients are advised to take even more if they

need it. Obviously, this is something to dicuss with the medics

before you make any changes, but the dosage has to be sufficient to

help in the digestive process by replacing the pancreas' own

exocrine function..

I am not yet diabetic so I won't comment on that particular problem.

I do have extensive calcifications although no one single large

obstruction has been mentioned. What I can say is that medical

opinion can certainly vary. At first I was advised to have the TP by

the pancreatologist/surgeon whereas my gastroenterologist advised me

against the surgery. Later, the pancreatologist himself modified his

view in the light of a number of factors, especially the fact that I

responded well to a low fat diet plus Creon. My pain level, and

other symptoms diminished somewhat with treatment.

I am really sorry you are confused as to the best option. Maybe you

need yet another opinion? Are both the doctors you saw surgeons? A

physician may give a different opinion sometimes from a surgeon's.

Is either of them experienced in this type of surgery? What reasons

does each one give for his/her opinions?

It would not be right for me to try to answer your question (even if

I had more knowledge than I do!) but one possible thing to think

about is how much your wife's quality of life is affected at the

moment. Some docs believe that it is better to leave things alone if

a relatively normal life can be still led by the patient, with

reasonable management by diet and medication. This was my gastro's

view. (Of course, I don't know what the possible effects of the very

large stone may be in terms of causing recurring attacks which could

be more serious than earlier ones. I'm certainly not advising one

way or another, just giving some thoughts and questions for your

doctors.) Has either of them suggested other treatment for the large

stone? (I apologise if I've missed some of your posts.)

Perhaps if you wait for a little while, the right answer might

become clearer. Just one other thought occurs to me. My gastro, when

trying to dissuade me from having the TP too quickly, did point out

that I was not yet diabetic. The implication was that if I had been

already diabetic then his advice just might have been different; I

would have had less to lose. (The TP would have made me diabetic at

once. In the UK, the TP with ICT is very rarely done. In any case,

my pancreas is probably too diseased to provide enough islet cells

for a successful transplant.) If I had been already diabetic, then I

might have been more inclined to accept the TP. On the other hand,

some people seem to think that a TP could make existing diabetes

worse, although this was not the view of my particular doctors.

This, again, is something to discuss with your doctors.

I'm sorry not to be more helpful. I can just identify with the

dilemma, having been through a similar one two years ago.

I do wish you and your wife the very best of luck, whatever decision

you come to.

Fliss (UK)

[Guest guest]

Dear Mehet,

I have had CP since I was a child, although I didn't get diagnosed

until 11 years ago. Ever since I was about 8 years old, I would

get " strange viruses " that left me in pain, vomiting, and diarrhea.

I wouldn't eat or drink for a week or so. I had been to the

hospital several times [when I was a child and a teenager] for

fluids, because of dehydration; the doctors would write me off as

having gastritis. No doctor ever checked my levels, nor did they

ever suggest further testing. Ten years ago, I had an ERCP the

doctors found stones in my duct and therefore labeled me as having

Pancreatic Stone Disease, stage V. My doctors concluded that I see

Dr. Cotton, have a Puestow, or possibly a Whipple. But at the time

of this diagnosis, I wasn't sick. I wasn't struggling with bouts of

pain, although I was (and always have been) nauseous. I put the

test and the doctor's recommendations behind me and continued to

live my life, and continued to have " strange viruses " , well into

adulthood.

In December I became incredibly ill and started having to go to the

ER for pain meds, IV fluids, etc. At this time, one ER doctor

blamed it on food poisoning (even though I mentioned several times

that I have CP and the levels won't necessarily be raised if I am

having an attack). I started going to the ER on a weekly basis

which quickly turned into being admitted. Thankfully, my GI doctor

focused on making me comfortable with pain meds, IV fluids, etc. We

thought that I would be out of work and recovered within a month's

time [when the doctor told me I could be sick for a month, I

laughed, as I have never been sick for that long!]. Things just

kept getting worse. The next few months I suffered many setbacks on

the account of some local doctors and bad decisions (NOT anything

related to Dr. Cotton).

I didn't have any documented problems with the stones until 9 months

ago. I was sent to see Dr. Cotton at MUSC [Medical Univ. of

South Carolina]. Dr. Cotton is a world renowned Pancreatologist

with an emphasis on ERCP therapy. The MRI, MRCP, and CT scans all

showed that several stones had clumped together to form one big

obstruction. My digestive fluids are thick (most people's are like

water) but my are " sludgy " and overtime, the sludge starts to stay

in the duct. The stones also prevent the digestive fluids from

their normal flow, thus causing pressure in the inside of the

duct. . Somehow, the problems with my stones triggered the head

of the pancreas to become very inflamed and mad, thus making me have

pancreatic attacks.

Three times, I went to see Dr.Cotton. I was incredibly ill even

before going to see him the first time. I couldn't eat or drink for

about 3 months (I couldn't even drink water!). I was still on

narcotics and nausea meds every 4 hours. I had been in the

hospital for weeks at a time. I had a J-tube (feeding tube) which

was literally a lifesaver. Up to this point, I lost a lot of weigh

and I needed to get some calories in so I could heal. The first

trip to MUSC I had 2 sphinctorotimes [excuse my spelling errors] and

stent placement. I came back to Atlanta and felt considerably

better for about 2 weeks. My local GI doctor was so happy that I

felt good, that he pulled the J tube out. Big mistake, I got sick

again and was in the hospital for weeks. If I was at home, I was on

a still on a strict regiment of narcotics and nausea meds every 4

hours, because I was so sick.

The second time I went back to MUSC I had another stent placement

and ESWL. The ESWL broke up the stones and all I had to do was pass

the remnants, which was very painful. I was in and out of the

hospital again. The third time I went to MUSC, the doctor put in

large (size 7 stents) semi-permanent stents which needed to be

pulled in 3 months. I became incredibly ill again. I basically

spent all of May and June in the hospital. I would come home for a

night and wind up back on the floor the next night. I was having a

lot of pain (and also suffered through a nasty, miserable PICC line

infection). We talked to many doctors in the hospital and finally

someone mentioned that if the stents are off even a few millimeters,

they could cause irritation in the pancreas. As soon as they were

out, I felt good for about two weeks. When I began having pain and

needed to be hospitalized (again), we called Dr. Cotton, who said

anything he could do would be temporary and the next step is

surgery. He was very disappointed that he wasn't able to help me.

After going back and forth to MUSC and not having any luck with the

procedures, I finally was referred to my hospital's pain clinic.

Once you become a patient the clinic goes through your medical

records, doctor's documentation, etc. Their main goal is to get you

on a routine of medicine that makes you able to tolerate the pain.

They don't want you completely zonked out, they want to give you

meds, so you can work and live and not be in excruciating pain. I

would say that 70% of pain-free minutes of the day is their goal,

because I was told that if the Methadone was keeping me at 70%, than

it is doing it's job. I am not saying that I am always comfortable

on the Methadone and Cymbalta, I am not, I do have bouts that are

horrendous; therefore I take Dilaudid for breakthrough pain (I do

this sparingly, because of the addiction and physical dependency).

They were not so quick to jump to giving me anything for BT pain. I

had a bad attack before my third appointment with the pain clinic.

Finally my ER doc called the clinic and said they didn't want me to

come to the ER for pain control. The ER doctor told them to give me

the meds for home. Finally, they did give me the Dilaudid, but I

had to prove that the regiment was holding me at all times. I take

40 mg. of methadone 3 x/day (long acting), 60 mgs. of Cymbalta once

a day, Phenegran 3 times a day and Dilaudid for breakthrough pain.

I just have to evaluate one day at a time, one attack at a time.

Now I am at a rock and a hard place as there is nothing that the

doctors can do to help me. I had a surgical consult, to which the

surgeon said that I needed a Whipple. I've had 3 months to

research, deny, and think about what is the best decision for me. I

began getting sick again and the attacks are very intense, with no

warning. I am just living from moment to moment; I seriously can be

fine one minute and the next I am in attack mode. It is very

unsettling and very unnerving. I've realized that I don't like

being on medicine all the time, as I am not thrilled with the side

affects. I want to get on with my life, be able to have a job and

friends, and have quality time with my wonderful family.

Ø She was diagnosed CP with calcifications in the tail area

three years ago.

Did your wife ever have blunt trauma in the abdominal area, b/c I've

read somewhere that damage to the tail is rare and is mostly brought

on by trauma to the pancreas. (I could be wrong, so please don't

quote me.

>

> She has been using insulin for three years now. She started after

CP diagnosis. She had never suffered form diabet related issues

before. Only thing I remember was her blood sugar level was seen

higher than normal during her pregnancy controls. Now she takes

insulin before each meal and before sleep. Sometimes she has

hypoglicemia.

>

> She has been having constant pain for ten months now. She has also

diarrhea. She is back on Creon now. What I understand is, two stones

united to form a giant one and obstructed the Pancreatic duct.

>

>

> If I come back to surgery; doctors do not talk to us much in

detail. One University Hospital doctor said TP is necassary. They

said that her pancreas has already lost its endocrine and exocrine

functions because of calcifications. We were afraid and went to

another doctor. He said; in our case TP or Whipple is not necassary

and indeed would be a mistake.I think he is thinking of performing a

drainage surgery (Puestow).

>

Ø We do not know which one to believe. Both of them is

believed to be the best ones in their areas in Turkey. We want to be

optimistic and believe to the second one where organ loss is not

recomended. But will the stones occur again after the procedure. If

yes when? This we have to investgate and hear from the ones that

already have Puestow.

Unfortunately, the stones can come back and it is impossible to tell

how long your wife could go without forming stones. I know because

we've asked these questions and the top doctors (with specialty of

pancreas) can not give a time frame, they just don't know. All they

can do is try the different ERCP and stent placements to buy some

time instead of rushing to do surgery. I am having a Whipple,

because the damage and calcifications are in the head of my

pancreas. I also wasn't ready to jump into a TP, but I know that if

I (G-D forbid) ever have problems like this arise years from now, I

will be able to have a TP.

I can't relate to your wife's problems with diabetes and BS

problems, but when I read your story my heart sank. I would never

wish this disease and these problems on my worse enemy.

Best of luck,