Affraid and alone - needs some advice

[Guest guest]

Hi everyone!

I don't want to bore anyone here, but here is my story. In February of

2003 I had a car accident that resulted in internal bleeding. My

pancreas was damaged and they had to operate. They inserted a stent

for a month or so, the length of my hospital stay, and then I was

discharged with one remaining drain out of the 3 that I had. There

was a lot of fluid coming out but eventually it stopped after about 2

months. Anyway, considering that I almost died, I made out pretty

well, and I was doing ok. I had no trouble with any food and my GI

didn't restrict anything on my diet.

A year later I started to get these pains in my stomach area. I

figured that it was my pancreas, but it happened rarely, so I didn't

bother doing anything about it. Last summer it started happening on a

regular basis and last October 2004 my GI hospitalized me for a week

to run some tests. He gave me enzymes to take before my meals and

some percocets for the pain. Since I'm a student in her senior year,

that kind of screwed up my semester, but I pushed on and finished 2

classes and got 2 incompletes in order not to lose my scholarships.

You see I am a Canadian and I go to a Florida University so I am an

International student. The tuition is outrageous and I can't afford

to pay it, so I need to keep these academic scholarships going, which

means keeping very good grades to keep my GPA up. Not an easy task

when your rolling on the floor in pain and you have to study for exams

and do homeworks and projects.

I went back to school in January 2005. It was hard struggling with

school and the pain. I now had 4 classes plus the 2 Incompletes

classes. In March of 2005 I ended up back in the hospital for another

week. This time my GI told me that the best thing for me would be to

have an operation. I told him that I wanted to finish my semester

first, again because I didn't want to have to withdraw and lose any

scholarship monies. Luckily I once again got my teachers to give me

Incompletes.

I also wanted to get an Internship this summer and I even have one

lined up. But now I'm thinking that my boyfriend is right and that I

should go for this operation as soon as possible because the pain is

just horrible. The internship was just a dream that I cannot get.

Anyway, all this to say that pancreatitis has caused havoc with my

school plans. I now have 3 incompletes classes from this semester. The

other 2 from last Fall I took care of. I am getting A's but I don't

know how I did it.

Anyway, I went to see the Surgeon and he told me that because of the

first operation, my pancreas is not draining properly and this is what

is causing my pain. This is probably due to scaring tissue from the

first operation. I also have a pseudo-cyst and gallstones. So he gave

me 2 options: to either cut out the piece of the pancreas where it

doesn't drain properly, or to loop my intestine and attach it to the

part of my pancreas where the drainage is being done properly.

Those 2 options seem gruesome to me, but I guess the best one would be

the looping one because I don't want to loose a piece of my pancreas

and run the chance of having diabetes. But the loop thing has a 70%

chance of making me pain free, which I guess are good odds (yes? no?)

I would like to know what you guys think of these surgeries. I am all

alone down here and I have no one to turn to. I do have a boyfriend

but he is so busy with work, and works so far from where the surgery

would take place that he wouldn't have the time to come and see me. I

live in the Pompano Beach area, but the surgery would take place at

the University of Miami. This is far from where I live. I feel so

alone in all of this, taking this decision and all, plus when I will

go get the surgery I will be all alone for my hospital stay and that

makes me really scared, especially after you wake up from the surgery.

I had a friend that came and visited me everyday when I had my first

surgery after the accident (my boyfriend couldn't because he was in

the car accident too and was pretty banged up himself) but now that

friend has passed away. I wish my Mom and Dad or my sisters could be

there with me, but they live in Montreal. Plus my Mom is sick and my

Dad just had a quadruple bypass surgery (and I couldn't be there) so I

won't have any family with me. I feel like a baby saying this but I

know I will feel so alone an scared.

I know I need to go through this. The pain management doctor that they

found me upon my last hospital stay (a total jerk) told me he wouldn't

treat me anymore until I get the operation. When I tried to explain to

him that I just wanted to finish this semester, he just blew me off.

He's got me on Fentanyl patches, but he doesn't want to give me

anything for when I have an " attack " . It's like he thinks I'm going

to see him for my enjoyment. I guess these doctors are careful because

of those that are pain killer addicts, but come on. Anyway, sorry,

that was just me venting about this jerk.

Can someone please give me some advice? Does anybody know how long it

takes from the time you call the surgeon and say " ok I'm ready for the

surgery " until the actual surgery? What about the recuperating time

afterwards, how long is it? And what kind of diet would be

recommended? From what I can tell, it seems that my diet wouldn't have

to change once again. But that's what I was told the first time and I

think that's what got me to get worse. Is stress something that makes

you guys have what I call " attacks " because it seems to be a trigger

for me. There is no particular food that makes me feel worse or better.

I'm sorry for the long post, but I am so lost and confused. If anyone

can offer any advice or if anyone know anything about these surgeries

or any other thing you can think of, please do not hesitate to reply.

Thanks in advance

Brigitte

[Guest guest]

Hi Brigitte,

It sounds like you really have some tough positions and decisions to make. I

cannot offer much about the surgeries or treatment except to observe that you

do seem to have covered all of your options and have received good care, as

good as possible, since your accident.

I can also suggest that it seems like you have realized that you must attend

to the Pancreas problem first. maybe if your problems were explained to the

University, they could provide an interuption that was authorized so you could

focus on one problem at a time and hopefully resume studies after your physical

problems were resolved.

For you, my very

Best Wishes, Poncho - GA

[Guest guest]

Brigitte,

I can't offer you much advice on how long the wait for surgery is and the

recovery time because I am in the same place that you are. I am currently a

Sophomore at Brandeis University in Massachusetts and just trying to finish

the semester. I had pancreatitis from a gallstone and major damage to my

pancreas, right now my pancreas is not draining right and I keep having

pseudocysts form. My only option is surgery to have my pancreas drain into

my intestines. Right now I am trying to delay surgery until after the

semester (my GI is not happy) but it is just so important to me to finish

the semester and classes.

I know how you feel trying to get through the pain in order to just get

your work done. It is a very hard situation to be but just imagine how

great grad school interviews can go when you say look at how bad I was

feeling and the grades that I still managed to get.

I am in a pretty close situation to you so if you ever want someone to

complain to feel free to e-mail me merica4@...

a

[Guest guest]

Brigitte,

I am sorry you are going to be so alone during this time. Seems to

me that you have had a very rough time of it, not just with your

problems but with those of your family also.

I don't know if there are members down your way who can help you

out, or at least visit you, but you will get " telepathic " support

from here, that is for sure. When you do schedule your surgery, be

sure to let me know what hospital and when, so I can put it on the

board for people to send you get well cards, and/or give you a call

to see how you are doing...

Where in FL are you living? Is Miami the only hospital option given

to you? If you are able to have the surgery at another large

hospital in a different state, perhaps some of our members would

even be able to meet up with you to keep you company. There is a

service offered to patients called Angel Flight, should you need

transportation to / from the hospital when you live a fair distance

away. Pilots provide their time/fuel/planes to transport patients

from home to hospital and back. This is free to the patient.

I have used them as have a few others on this site and they are

wonderful, so if travel is the only thing stopping you from going to

another hospital this might help solve that problem...

It sounds as if one of those surgeries is the Peustow Procedure. I

was set to have this operation, then they changed it to the Whipple,

but didn't end up having either.

If you need any help, let me know..I am only too happy to try and

organise anything for you that you need help with etc..my belief is

that anything and anyone is only a phone call away *L*

Anyway, take care,

Ward

PAI Administration Support

dceward@...

[Guest guest]

Hi Brigette, you certainly have had a very rough go of it. I am so

sorry. However, the U of Miami is an excellent institution and has a

wonderful staff of pancreatologist. I know one guy there, a panc doc

by the name of Dr. Draganov. He is excellent, I used to work

very closely with him for many years and he has a just dreamy slavic

accent. Very nice guy and quite thorough.

You have a difficult decision to make between the resection surgery

and the drainage surgery. I think you need to determine exactly

where the damage is before you can make such a decision. You did not

say what part of the pancreas would need to be resected. The islet

cells, the insulin producing cells are primarily in the tail of the

panc. If you have the head of your panc removed there is little

chance of becoming a diabetic. However, if you damage is due to a

difficulty in your pancreas draining the digestive enzymes then the

drainage surgery, aka Peustow, would help tremendously. so as you

can see knowing exactly what is wrong will determine what the

surgical approach should be most beneficial.

Is there a time when you are scheduled to see the surgeon again, can

you call him or email him and ask him these questions? I know its a

hard decision to make and how difficult it is to be so far from your

parents. Feel free to ask us anything at all, and you wont be alone

for the surgery, we will call you and send you cards and such. Just

keep in touch, you can get over all of this it will just take time.

Warmly,

(SC)

[Guest guest]

Bridgette,

I can't make your decision for you, but you might want to ask the doctor

a few questions that may help you make it.

1. how many of these surgeries has this doctor done?

2. What would be the next step if the surgeries didn't stop the pain?

Those are the only questions I can think of now, but if I think of

more, I'll email them to you. I'm sure others will come up with some too.

As for your questions:

1. The length of time from decision to actual surgery will depend upon

the surgeon's schedule and when he has openings. It could be a week, it

could be a month.

2. The recuperating time: inital recovery period is usually six weeks

after you leave the hospital, but you probably won't feel like normal

for about six months or so since they might have to make a large

incision as I assume this is major surgery and not laporoscopic. If it's

laporoscopic, the recovery time will be much less.

3. As for diet, I recommend that you stick to a low fat diet from now

on, even if the surgery suceeds. No point in risking agravating the

pancreas. Probably should stay away from red meat and fried foods of

any kind. Also, stay away from alcohol. Alcohol really sets the

pancreas off. I'm not accusing you of being an alcoholic, but most

people usually have a little every now and then. Not even a glass of

champaigne to ring in the new year.

4. Yes, Stress can definitely start off an attack of pancreatitis. You

might want to look into stress relieving techniques (meditation, Tai

chi, Qi Gong, etc).

Don't worry about the long post. This place is here for support and

sometimes long posts are necessary. Unfortunately, because pancreatitis

is somewhat rare, there just arent enough of us that there are a lot in

any one city. So, now you are here and we'll be here for you whenever

you need us. If you have any Instant Messenger programs, many of us are

on them and you can add us to your buddy lists. Mine is : Yahoo & AOL:

hominidtwo, MSN: hominid2. If you contact me, just say you are with PAI.

When you have decided what surgery you have and the date is scheduled,

let us know when and where so that we can send you cards while you are

there. I wish you were close enough for me to visit you, but I'm on the

other side of the US from you (CA). Also include the hospital phone

number so that those of us who have unlimited long distance can call you

to check up on you. It's not the same as in person, but it's enough to

make you feel a little less alone.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

Thanks Kimber. I wrote down those questions on my " Surgery Questions

List " .

Thanks for answering my questions too. I'd better get on setting up

the surgery if I want to go back to school in September. I know it

took me a long time to recuperate after the first large incision

operation I had for the pancreas operation I had, and I did stay in

the hospital for a month, so I was expecting to be out of commission

for longer than just 6 weeks. So that's good to know. But I know

what you mean about not feeling right for about 6 months. But hey, the

doc said he'd try to fix the large scar left by the first surgery, so

I guess there's s one good thing about all of this!

I guess I knew about the diet but was in denial. But I guess it's not

a bad thing having to eat properly, we all should! If I could quit

smoking too.... plus I suffer from panic attacks, so the stress is

hard to control sometimes with school and everything. I was thinking

yoga.... I guess I'll have to make time for it at one point... but

I've read somewhere that one glass of wine can kill you when you have

pancreatitis. Is that true?

May I ask if you've had an operation?

Thank you so much for your support. I really feel like I found a

little family here.

Brigitte

[Guest guest]

Brigette,

Well the one glass may or may not kill you, depends upon how bad your

pancreatitis has progressed, but it will certainly make you WISH you

were dead as the pain is so bad. I can't even cook with the stuff. If

it's not 100% cooked off, I get the most awful pain, so I just avoid

anything cooked with alcohol.

Yes, I've had two operations, but only one of them was on the pancreas.

The one on the pancreas was to try and correct the birth defect that has

caused my pancreatitis. They were hoping to stop mine from becoming

chronic. It was major surgery, though I was only in for a week and a

half, but then, I healed nicely and had no real complications, so how

long you are in will probably be determined by if you have any

complications to the surgery.. I was going to school at the time and had

to miss the first three weeks of school as I was still in the six weeks

recovery period and not allowed to do anything but sit and sleep. It

took months before I felt normal though. I had to put my books and purse

on a cart and drag them behind me because I wasn't capable of picking

them up, let alone carry them in a backpack. I used a generic luggage

cart that you can purchase at most drug stores and the like places.

My second sugery was a heart bypass at the age of 29. I had a blood

clotting disorder that I was not aware I had till I had a heart attack

caused by a 2 inch blood clot in the heart. Not a nice way to find out

you have a blood clotting disorder. So I had to have an emergency heart

bypass (single). The location of the clot made it impossible to do an

angioplasty. The angioplasty would have killed me, so it was not an option.

Let us know when and where you are having your sugery so that we can

send cards to you while you are in the hospital.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.