My Husband and Daughter suffer along with me

[Guest guest]

Hi everyone,

I have been having pancreatitis attacks for 5 years now. It started

one night around 2am and lasted until 4am. Woke me from my sleep. I

thought it was bad indigestion and bore with it until it was over.

Then it happened again the next night, lasting 5 hours. This

continued for 6 weeks every other night until the pain got so bad I

couldn't breathe and had to go to the ER. The doctor gave me a shot

for the pain and an order for an ultrasound to be done at my

convenience. No bloodwork was taken and I was left wondering. That

was in my hometown in Australia. Surprisingly, the attacks stopped

for 3 months, then on a visit to Tennessee, I had another attack

overnight in my hotel room in LA during my stopover. I made it to my

final destination worn out and finally pain free and had no more

attacks for 17 months.

During my painfree time, I moved to Tennessee, got married and fell

pregnant...woe and behold when I was 7 weeks pregnant I had another

attack. Back to the ER..this time I was admitted and told that my

amylase was around 6000 and was suffering from pancreatitis. Doctors

couldn't do anything to find the problem because of my baby. I was

more worried about her than me. We had no idea if the painkillers and

my attacks would harm her..thank god they didn't, she turned out

perfectly.

When I was 22 weeks, my GI deemed it safe enough to perform an

endoscopic ultrasound where he found a tumour at the papilla of my

pancreas. Surgery was necessary when my baby was born. 10 weeks after

she was born I had a partial whipple. I got to keep my pancreas and

stomach and duodenum. The tumour had been blocking my pancreatic duct

and I was told I should be pain free from now on.

Not so lucky. 3 months after my surgery, I was back in hospital with

another pancreatitis attack. This was the beginning of many many

more. And of course, my doctor had a falling out with his partners

and went on hiatus for 3 months. None of his partners or any other

doctors I tried wanted to take my case on, so I suffered through many

attacks at home eating percocet I had leftover from my surgery months

before. Finally, he came back to work and after an ERCP, found that

my pancreatic duct was blocked. On the way home, I suffered another

attack and turned around and made my way back to hospital again..my

home away from home.

I also suffer from Familial Polyposis (a pre cancerous condition of

the colon) and had to face the prospect of possibly having my stomach

removed due to many polyps. I got a second opinion on that at

Vanderbilt Hospital in Nashville by a Dr Grady, who I also told about

my pancreatic woes and he got a top GI to have a second look via

ERCP. I woke up from the anaesthetic to find out that he couldn't

find my pancreatic duct whereever it had been relocated to in my

surgery.

From there I was referred to Dr Lehman in Indianapolis who found that

yes my pancreatic duct was under immense pressure and partially

blocked and that a sphincterotomy would solve the problem. For a week

after that I had no pain swallowing drinks, eating or anything else

and speaking too soon, told most of my family and friends that it was

a success. Then it started again.. I've just come out of hospital yet

again after another attack and see a new local GI after Christmas. It

is looking like they will be performing more surgery in the new year

to use my small intestine to help enlargen my pancreatic duct..but

only when all these doctors can rule out it isn't anything but

pancreatitis. So I've been told I need to suffer through a few more

attacks and make sure I record my amylase levels.

After being told my duct isn't dilated through many CT's and MRCP's,

I was congratulated by one doctor on being in the 30% of unknown

causes. Needless to say, I am hurt, angry, and scared that I will

have to suffer through this and for it to only get worse.

I hope to god my daughter doesn't suffer from this also, as she has a

50% chance of getting Familial Polyposis also, and this started mine

off. My husband is stressed to the max and my daughter cries

everytime I go to the hospital. I am lucky to have family members who

have given up days of work and travelled from Australia, just to look

after my baby during my surgeries and hospital stays as this state

and my husband's company aren't very accommodating when it comes to

my illness versus his paycheck.

I always wondered what it would be like to suffer from an illness

that doctors knew nothing about...now I am living the reality and I

don't like it.