returning member

[Guest guest]

Hello all,

I am an old member who had to leave for a while back in April or

May. Life has been quite busy since I left. Some good, some bad.

As those of you who remember me know, I begin having attacks of

acute panc in Jan 00 and was diagnosed with cp in Jun 03.

My daughter, Nikki, got married the end of May and the wedding was

beautiful. She and have now been happily married for

almost two months and all is wonderful with them, despite the fact

that they are very busy with school and work. They are so

incredibly happy and that really does my heart good. To make the

wedding even more interesting, my 20 year old stepdaughter,

's, boyfriend of 3 years asked her to marry him and gave her a

beautiful engagement ring only minutes before Nikki walked down the

aisle for her wedding. Now May 29, 2004 will be an incredibly

special day for both our girls! and Luke also plan a long

engagement, so that is good! Nikki and were engaged for 2

1/2 years.

I had my visit to Mayo Clinic in Rochester the last week of June.

It was not all that productive in my opinion, but a ct scan there

did reveal a 'prominent ampulla' in the words of the radiologist on

the report. The GI doc there said there appeared to be either a

tumor or some partial blockage at the ampulla of vater. He

convinced me to let them do an ERCP, which was a MAJOR mistake.

Despite 400 mg of demorol and 17 mg of versed, I was awake until the

very end of the ERCP. It was by far the worst experience of my

life. I was literally screaming (the best I could with a tube down

my throat) the entire time. The ERCP apparently took much longer

than normal because the equipment failed once and they had to start

over and also because I've had a gastric bypass and my intestines

have been re-routed. It was essentially a waste because they could

not get to the area of the ampulla of vater or my pancreas because

of the gastric bypass. The GI doc at Mayo said the area around the

ampulla of vater was actually slightly visible on the last ct scan

I'd had at home a few months back, but was definitely increased on

the one done at Mayo. I really haven't gotten any definitive

answers as to whether or not anything can or should be done about

this 'prominent ampulla'. The findings were consistent with my

local GI/hepatologist's suspicion that my cp was somehow caused by a

disruption in the flow of bile. However, the doctor's at Mayo also

said they are not sure that I have autoimmune liver disease, which I

was diagnosed with in Jan 03. Their pathologist said the damage to

my liver looked more consistent with damage caused by recurrent

attacks of acute panc. This was despite the fact that the same

liver biopsy slides (from Dec 02) had been read by a pathologist in

Birmingham, AL as well as a hepatologist at Vanderbilt and they both

agreed I have autoimmune liver disease, specifically autoimmune

hepatitis (AIH). The hepatologist at Mayo suggested we stop my meds

for the AIH (imuran and prednisone), especially since both are known

to cause attacks of acute panc. Anyway, I've already had one attack

of panc in the month since I got back from Mayo and just got out of

the hospital yesterday. I've been off Imuran and prednisone for 3

weeks and they are just watching my liver enzymes closely. My

GI/hepatologist basically gave me a non answer on what could/should

be done regarding the 'prominent ampulla' and told me he wanted to

first address the AIH and the trial of stopping the meds for it.

I'm mostly just wondering if anyone has any info regarding

a 'prominent ampulla'.

Sorry to go so long without being in touch. I just can't seem to

really get my strength and energy back. I was in the hospital 3

times in June and then spent a week at the Mayo clinic. My

hemoglobin, hematocrit, and some other blood counts are staying low

so I'm sure that's partially why I am so friggin' tired!

I hope this finds everyone doing well!

W