Hi Emma!
I had a Sphincterotomy last September - and that is what finally “fixed” me. Although I did have a rough couple of days this week, I think it was just that we are in the middle of television pledge (I work for a public tv
station) and I have been working like a mad person and eating food on the go so it has been pretty crappy stuff!
Enzymes did not help my situation either, I actually got sicker after I started on the enzymes but it doesn’t mean that the enzymes pills were making me worse. I just was going down that hill that so many of us have
been on!!
The test that they did that finally determined what was wrong was an ERCP with manometry. I went to the University of Minnesota to Dr. Martin Freeman (my hero). ALL OTHER TESTS SHOWED COMPLETELY NORMAL, PICTURE PERFECT ANATOMY. THe manometry measures the “water pressure” on your pancreatic duct and sphincter. (the word sphincter still makes me giggle - think Wayne’s World). My manometry measure was 7 times the normal pressure.
Here is a way to picture it - you are pouring something through a funnel but you are pouring faster than it is going out of the funnel and the top of the funnel is filling up. That is what “higher than normal pressure” does to your pancreas. Except the liquid is DIGESTIVE ENZYMES and the top of the funnel has a lid on it - your pancreas! So, it makes sense that it would cause some pain! I think I had grown used to the pain so I was just sick, in general. I had no energy, I just was weak all the time.
When I could feel the pain it was a little right of center, up pretty high, kind by the bottom of my ribs. It was a very sharp pain. My other symptoms were nausea, diarrhea (only when I actually ate food), etc. etc. During
really bad times, my whole body would feel tingly and my heart would race. I think that is what happens when the enzymes levels are elevated in your blood.
So, I know that some people get nervous about ERCP’s and sphincterotomies - but if they are done by the right doctor and when a doctor has a good idea what could be wrong but the ERCP is the only way to really find out if they are right - then you have to take the chance. My regular GI doctor (who was the 2nd one I went to because the first one said there was nothing wrong with me), took the time to make sure that we had checked everything else and had tried everything else. Then, he picked the right place and the right
doctor for me to go to for the ERCP and manometry test. There aren’t many places that do the manometry test.
It sounds like your GI is taking the same line, being cautious but also caring about your final outcome. There aren’t many medical centers with a Pancreatic Disease department or Center - so I am sure that the doctor you see there will be able to get you going in the right direction.
I had my ERCP with sphincterotomy last September. It took about a week before the pain was completely gone and they placed a stent and I went to my regular GI doc to have that removed during a quick endoscopy two weeks after. Then, it was like a whole new life started!
Every holiday is a milestone. My friends and family look at the plate of food I eat and comment that they have never seen me eat like that before. I have energy to actually HELP MY PARENTS out instead of the other way around. I WORK OVERTIME at my job! All the mean people before who treated me like I was “faking” can barely look me in the eye. My mom says we are throwing a huge party in September to celebrate. And, even though I am eating actual meals now, I have LOST WEIGHT. I have had to buy a whole new wardrobe
because I dropped two sizes. It was expensive, but way less that a hospital bill! I think I was just perpetually bloated, because even my shoes were too big for me. k
I got a little scared yesterday when I felt terrible. I just got all my medical bills paid off. FINALLY. And, all I could think about was what I was going to lose. But, I will take it easy for a couple days and hopefully it
was just a scare. I need to slow down! There is no reason I have to work 60 hours a week just to prove that I can do it.
OKAY, long email. But, i can drink coffee again and I have had almost a pot this morning.
I know that all of you have to deal with so much emotional pain since there are so few people out there who understand what it feels like to have a bad pancreas. And, I know that for some of you with chronic pancreatitis, you may not ever get your life back. I do not take my situation for granted. I know that I am one of the lucky ones.
Amanda
