Rough Week

[Guest guest]

Hello to whomever reads this message.

I've had Pancreatitis for well over 20 years, as I had attacks as a

child. Like others, it was not diagnosed until 11 years ago. I've

had attacks, which I thought were viruses that I would pick up from

friends or the kids that I teach. Well, this year has been eye

opening, to say the least. On Christmas Eve my whole world

changed. I went to the ER to get pain and nausea meds. The first

ER doctor said I had food poisioning and didn't even relate it to my

Pancreatitis. The next week, on New Year's Day Eve, I was back in

the ER (damn, that hot dog!). This doc finally said, if your

feeling this way, assume its Pancreatitis. Well, that put a whole

different spin on all these " attacks " I've been having.

Anyhow, I've been to the ER more times than I care to remember,

hospital admissions for weeks at a time (they would discharge me and

I'd wind up back there the next day for another week long

admission!). I've had 3 stent placements and a couple bile duct

sphinctorotomies (spelling) by Dr. Cotton, a Pancreatitic

Lithotripsy at MUSC (passing the gravel was so fun, don't ever let

them tell you it's not a big deal), 2 trips to ICU, one stay in the

perforation room, one Folly cathater, 2 PIC lines with TPN that got

infected (adult fevers are the worse, I was in such bad pain from

that, I didn't even feel my pancreas!) one J-tube (that they ripped

out after I got my stents done, my GI thought I would be okay and

instead of waiting for a month to see how I did, he called the

surgeon and told him to take it out that day, biggest mistake ever,

as this was in Feb. and its August and I've been sick for the last 8

months straight, great thinking doc)!, a NG tube, multiple ERCP's, x-

rays, CAT scans, MRIs/MRCP, you name it, we've done it. I am on 40

mg of Methedone, 60 of Cymbalta daily with Dilaudid for BT pain. I

don't feel like it is in my best interest to stay on these drugs and

have to take Dilaudid 2-4 times a week because of these attacks that

come on with out warning and make me horrensously ill.

The last time I was admitted into the hospital (23 day stay)my GI

doctor was at his wits end. We began to discuss surgical options,

as there is no other way to help me. I had sent my records to

Dr.Warshaw at Mass. General. Warshaw called my parents (I was in

the hospital) and said I needed a Whipple. He caught my mom off

guard, so she wasn't prepared to ask him all the questions we have.

She did, however, ask him about the TP/ICT to which he replied that

it was still exprerimental. During this time, June until now, I've

had to decide what is best and right for me. We've even called Dr.

Cotton, he told us that surgery was the next step for me. Anything

he would do would be temporary and nothing [that he did] was helping

me. I spent a lot of time researching the Whipple, the TP/ICT, and

the Puestow. I've also researched Surgeons, etc.

This whole time I've been in denial, thinking I was getting better.

I thought the semi-permanent, size 7 stents were causing me

irritation. I got them removed the day after I was discharged from

my 23 day stay. I did feel better, pain free for 2 weeks. Than I

began having the attacks that I've already mentioned. They come on

lighting fast with an intense pain.

This past week, was one of top 3 worse things that have happened

during my 8 months of suffering. On Monday, my mom took me to the

mall, as we were going to mall walk (it is way too hot for me to

walk outside, I am overly sensitive to heat and especially being on

Methedone, I have a sweating problem [i can't imagine why I don't

have a boyfriend, I mean sweating is so sexy]. I had gone mall

walking a few days before and I did well, no negative side affects.

On Monday, it was nearing my time to redose with Methedone and I

always take Phenegran with it because I am always nauseous. I took

my Phenegran, because the nausea came on quickly and it was pretty

bad. We were getting ready to leave. My mom brought the car to

pick me up (I waited inside), and as soon as we got to the main

road, I was hysterical. My stomach started hurting me in such a

fierce manner, I didn't think we'd make it home. We were probably 4

minutes away from my house and (for the first time in 8 months) I

said, take me to the hospital. I cried all the way there in pure

hysterics. My dad had to leave work early and he was sick with

worry he'd call on the cell and I'd be wailing to him. When we got

to the hospital (this was a first, too) they took me right back.

After they gave me a couple doses of IM and IV Dilaudid and IM and

IV Phenegran, I was released upon my wishes. I probably should have

stayed, but I didn't want to be there again. I had another attack

on Wednesday, severe Epigastric pain, but I just took a few doses of

Dilaudid. This attack didn't get out of hand, because I took the

Dilaudid right when I started to feel the pain.

After all the drama on Monday afternoon, it all made me feel overly

sensitive, emotional, and not being able to control my crying.

Between Monday and Tuesday, I cried for 5 hours straight! I don't

know if it is the drugs, that time of the month, if am I spending

more time focusing on friends that have completely deserted me when

I've needed them the most, being single and wondering if I'll ever

have the opportunity to have a family of my own. This is the first

week in all these months that I've truly lost all hope, stength and

togetherness. I can't explain why this week and these attacks have

had such a negative impact on me. My irrational behavior has been

making my parents crazy, too. We're all frustrated and over this

chapter in our lives. I even had to tell one of my best friends

(she lives in Alabama and she drove 6 hours to come and visit me in

the hospital for one day. My other friends that live here didn't

even drive 30 minutes...)that she needed to get another bridesmaid

to take my spot, because I don't know if I will be able to make it

to her wedding (it is going to be in a rather remote location, on a

mountain, no quick hospital trip). She said she'd never put anyone

in my spot. She's wonderful, but I realized all the things that I

am missing out on. I've eight months of meeting new people, doing

the things I love, being able to drive, being able to go places on

my own, EXERCISE, etc. I have lost 8 months of my life. I can't

afford to live like this much longer. It just isn't an option,

because the longer I wait the worse things could get.

I've come to accept the fact that the Whipple is a must. I called

Dr. Cotton, who very promptly returned my call, and explained the

situation. The answers to all the questions I asked him, matched my

answers. He spoke very highly of Dr. Warshaw, stating he is one of

the best in this field. Dr. Cotton made me feel a little more at

ease. Also, I had an annual appointment with one of my doctors, who

is married to the surgeon that saved my life when I was in ICU.

They ate dinner with Dr. Warshaw, my doctor said he was very nice

and I'd feel at ease with him. This, too, made me feel better.

There it is. My first life altering decision. I don't have any

other routes to go. Hopefully, I will be able to look back upon

this as a turn off the route for the best. I know I will be anxious

to get well, so I can play with my nieces and cuddle with Mr.

Kitty.

I'll know tomorrow what dates are open.

I guess accepting is half the battle.

Thanks for reading,

[Guest guest]

Ah ...I have to tell you, I'm sitting here crying right along

with you as I read this. I'm so sorry you are having such a hard time

right now! But I also hope that now that you have made the decision

about the surgery, that things will be looking better for you mentally

as well. I've been sick with this for 12 yrs, and I know how hard it

is day in & day out. Please let us know when you get the dates for

your surgery and everything. I hope you have a much better week!

Hang in there Kid!

Lots of Hugs,

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