New member (long)

[Guest guest]

Hi! I am new here and finding the support very helpful. My experience all

started 1 1/2 years ago. I was getting a sense of fullness in my upper abdomen

every once in a while, like something was just there. It didn't seem to matter

whether I ate a lot or a little. My initial " self " diagnosis was there was

something wrong with my stomach, but it didn't persist often enough for me to be

concern. I also was having difficulty with my eyes. They were extremely

sensitive to light and hurt. I went to an eye doctor and was diagnosed with

iritis. She stated that iritis could be caused from imflammitory disease like

rhuematiod arthritis, but people can get it for no reason once in their lifetime

too. I was given an eye steriod for treatment. Also seemed like I was

nauseated all the time. This has been since I was pregnant with my daughter 7

years ago, so I thought I had just become more sensitive to foods, but it seemed

in the past couple years I was nauseas more often than not. At times when I ate

I wouldn't feel good afterwards. Finally last year I went to the ER for a pain

in my mid left back that wouldn't go away. It was prob on a scale about a 4 or

5, not bad, but couldn't stand it either. They checked my blood and told me I

was going to need to be admitted for pancreatitis. My amylase levels were in

the 140's. After 4 days of NPO, my amylase went down some but not to normal

levels. The docs thought it would go down as long as I kept on clear liquids

for a while. I was still feeling extremely ill. Did a CT showed an ovarian

cyst, (had r ovary removed 4 years ago for same thing). Docs thought the ovary

was causing my amylase to be high. Had surgery for that, with no rectification.

After month and half of malaise and clear diet I was referred to pancreas

specialist. On my way to see him (2 hours away) I ended up having to be life

flighted- vomiting, basically going into shock. I got to ER there and they shot

dye into my bile ducts suspecting gall bladder probs. Didn't see anything, but

next day I was violently ill again. They did XRay and found gall filled with

stuff, but not stones. Not sure what it was, so decided to take it out. Still

not feeling well, but they said it would take 4-6 weeks for gall surgery to be

back to normal. After 6 weeks, and no recupe, I was sent back to pancreas

specialist. He did 4 ERCP's with stents and I had several hospital stays where

they tried meds for gerd, ibs, and delayed stomach emptying. I think the stents

were suppose to relieve my symptoms, but they only made them worse. Any one

else had similar? Then they tested my Spincter of Oddi, had pressures so they

cut duct partially. Had no pain relief, though my nausea finally let up. I was

sent to a large medical facility with more technology. They did another ERCP

and completely cut Spincter this time. It seemed to help let up some of my pain

for a couple of months, but I was not totally pain free. I've had celiac sprue,

trypsinogen, rhumetiod arthritis, (can't really remember all of them) but all

have come back negative that they have tested me for so far. Did a bowel follow

thru. Showed lab tech exactly where my pain and fullness was. He said there is

not much there except small intestine and pancreas. Bowel test came back with

flying colors. An EUS showed some scarring in my pancreas which hard to tell if

it was from stents or not. Doc said I had 3 of 7 signs for chronic

pancreatitis, but my pain isn't typical of those with because I ALWAYS have pain

left of spine in my mid left back just about at and below of ribs. (Also had

neg spinal test) Does anyone else have continual pain? Only when the pain is

more intense or after I eat do I have more of a gnawing or boring in the front

just below ribs on left abdomen. If its really bad it feels like I just want to

bend over and more to the left. My amylase stays just above normal anything

over 50 is high and mine is usually between 115-160. I was started on enzymes

which help to curb nausea, but not pain. Since I have pain ALL the time usually

3-5 level in my back I take Lortab 7.5, and go to ER when it gets too intense

for me. Sometimes I can even tell I am going to have problems because that

iritis will come back first then start to get a fullness and later intense pain.

I was given pain med without acetaminophen, but then the fullness returns more

frequently with nausea. Has anyone experienced a fullness? What might the

fullness be from? Very elaborate message, but was hoping someone had similar

events of symptoms. Also have some ?'s. How long for the disease to progress

once symptoms start? Another symptom I am starting to have is a numbness and

tingling in my back where my pancreas would be located. I understand the

chronic panc and cancer of panc are similar symptoms. How would I know whether

I am having early signs of cancer or chronic condition? Many thanks for

offering some support for my suffering. angela