Pancreatitis Support Group
Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...
welp...Ive been very reluctantly and not in a hurry getting my ducks in a row for a consult on the TP/AIT for my son... when he goes for a few weeks without pain and able to eat I think "hey maybe hes ok" then BOOM to the ER we go....ok we are done...just got back from ER again...(we only go when the pain is tooo bad AND he is throwing up)
anyway had a first this time.... on CBV it showed 20,000 white cell..... BOOOOOO
Therefore....mom is tired of sendin her kiddo to the ER...half the time u get a doofus brain anyway.... this one pushed so hard on his stomach AFTER asking him his pain level...to which he replied 10!! OMG she sent him through the roof! Needless to say I told her to STOP ! she argued with me! (Troy... u know what mama bear can be like in the ER!)
anyway....so we are no longer dragging feet....:( ducks will be in a row shortly for consult......Im a sad mama........
Where is my tinhat?????
anyway had a first this time.... on CBV it showed 20,000 white cell..... BOOOOOO
Therefore....mom is tired of sendin her kiddo to the ER...half the time u get a doofus brain anyway.... this one pushed so hard on his stomach AFTER asking him his pain level...to which he replied 10!! OMG she sent him through the roof! Needless to say I told her to STOP ! she argued with me! (Troy... u know what mama bear can be like in the ER!)
anyway....so we are no longer dragging feet....:( ducks will be in a row shortly for consult......Im a sad mama........
Where is my tinhat?????
love you all.... :) sheila
Why do they always press on our pancreas anyways?
Is it so they can feel if it is extra swollen or something?
I would love to have a camera with me during one of these ER visits, and then upload everything to the WEB for all to see.
My worst Dr ever... withheld IV fluids when I was unable to eat or drink for days in order to make me eat or drink, and upon hearing that I'd had Iron infusions bc of mal-absorption said
"or you could just eat a hamburger and get over it!!!" WTF
He's lucky that I was to weak to move or I would have kicked his ass and then some. (needless to say it is written on my chart that he is not allowed in my room and complaints were filed. He was a Hospitalist not a GI doc and had no frickin clue about the pancreas)
TP/AIT is the next step for me too, docs are wanting too wait as long as possible, I've been a test case too many times already.
well we went to see the pcp (love her btw) she spoke with the new GI,that wants the tp ait and laid the cards out on the table for marcus for the first time....she was kind gentle but to the point...she said "I had an interesting convo with the GI..he actually called Dr. Reber, the tp ait surg,at his home to talk w him about your situation. ..We tried helping you with the docs at USCF...and unfortunately it did not work for you..I would like to see you pain free , and Dr. Reber says he can help...I want you to know that I believe at this point , since your panc is so sick, and due to some of your genetic testing.. and your panc also no longer is producing enzymes because it if failing...(she explained in more detail about this to him).....that it really does need to be removed....how do you feel about another surgery?" M ..." I really dont want another surgery.." doc..." I can understand that you dont, ...especially with everything that you have been through....and I am very sorry for that ...but I really would like to see you lve a pain free life....I need to be honest with you and tell you that your panc will not get better...and eventually you will be facing taking it out anyway....and I want you to know that in the future it is a possibility that you may get panc cancer....now I m not saying this to scare you...but I just need to be honest with you.........would you like to schedule a time to talk with Dr. reber now...or would you like some time to think about it?"....m....."i want some time to think about it".....after a pause I opened my big mouth and said...ummmm how bout since it may take a long time just to get the consult..we go ahead and get the referals etc.... and when that is ready Marcus you can decide then?....( cuz this pcp is a pediatricain and always is on the ball and M will turn 18 in April...dont want to start over with a new pcp)....
As far as how he is doing today..... very sore still....but pain is gone......this one is weird but as you all know pc is weird.. cuz he feel very sore....not ususal....so today we go in for blood to test for those white cells......M came home crying...wen to room and shut door..(basic teenage handbook 101)....basically it was the first time he was told face to face the reality of his situation....and ever since his last surgery didnt help (last april) he has been living a life of "hiding,denial whatever u wan to call it".....so my prayer is this if any of you are praying individuals..... Dear Lord....please open the door to which pathway we need to follow...if surgery, then surgery...if living a life a panc pain...then living a life of panc pain..but which ever way...Lord please show Marcus that you have a life for him...and give him the strength and courage to follow his path with a good attitude and do not let him live a life of bitterness"
thanx for listening to me babble..... luv you guys.....
ps...Diane are you having an attack right now? how are you feeling hun?
Sheila
My heart goes out to you and your son. I will keep you both in my prayers. Frankly, it sucks (my grandma hated this word and forbade me to use it........but, sometimes, it is appropriate!) that a young man his age has to face such horrible choices! No one his age should have to face a life of chronic pain.....
K