How should we proceed?

[MikesMom209]

My son, who is 21, has been recently (Feb.2013) started feeling ill and went to his regular Dr.  He was having stomach pain and diarrhea with bloody stools.  First thought it may be ulcer or stress related as he is a University student with a hectic schedule and carrying a lot of units - hit at finals time so therefor stress related.  Blood tests revealed low platelets and elevated lipase so he was referred to a hematologist.  They started him on 80 mg Prednisone and ordered an ultrasound of pancreas.  He had his gall bladder removed at age 13 following 3 months of being very sick where both liver and pancreatic enzymes were elevated.  During that illness he lost several pounds, became extremely jaundiced and had an ERCP done with sphincter removal also.  Removed his sludgy gall bladder.  He recovered and felt much better following that with exception of occasional stomach aches that we thought were diet related and due to not having the gall bladder anymore to help with digestion.  One incident even brought us into the ER in the middle of the night for pain relief so he could sleep.  He has become very health conscious over the years and is the best "healthy" eater I know and exercises daily.  Other than the ITP diagnosis this last bout of illness sounded so familiar to us and we thought it was somehow related...but the Drs. say no.  A few days ago after weaning down to 10 mg of prednisone his symptoms all returned with a vengeance.  He ended up in the ER again in pain.  Platelets were at 36, bloody stools and unbearable abdominal pain with elevated lipase.  They admitted him to the hospital.  While there he had 3 separate Drs. caring for him and we are not sure they were communicating with each other.  The hematologist concerned more with the ITP and getting the bloody stools in check the GI doc more concerned with the pancreas, and a general med doc who said she thought it was all autoimmune and he'd have to learn to deal with it.  While I don't necessarily disagreed with her I did not get any sense as to HOW to deal with it?  He was hanging around the hospital for over 2 days and no one was really telling us much of any value so against medical advice and armed with steroids and pain meds we checked him out of the hospital.  I can across this site while searching autoimmune pancreatitis and you people sound the most informed of any I've come across....so reaching out for help.... I know this is a long post but I'm putting it out there in hopes of finding someone who can offer us advise....how should we proceed from here?
Thank you so much for your time and answers!

[BChisto]

I struggled for years with severe abdominal pain, bloody stools, and getting horribly sick to the point where I've been hospitalized on many occasions and needed transfusions because my blood count was so low. I went, without an accuracte diagnosis; I was told that I may have a blood disorder so I should see a hematologist and out of all the medications they had me on prednisone was the only one that kept me stable.

It wasn't until I moved out of state and saw a better GI doctor that I've found out I have an autoimmune disorder (ulcerative colitis). Because my flare up were so incredibly severe (blood loss and pain ), and no other treatments were working.... I was encouraged to try Remicaid, an immuno-supressive drug that I would receive by infusions. This was the only "cure" for me. After 3 infusions my symptoms started decreasing and eventually went away completely.

It's a fairly new purpose for this drug (it was originally used to treat Crohns Disease) and I know your son's situation is different than mine, but I wonder if a similar treatment would help...

[trixieplayer]

Hello there! I am responding to your plea for advice regarding your son's symptoms and treatment. A year and a half ago, I was diagnosed with chronic pancreatitis and spent weeks in and out of the hospital for treatment of my condition which appeared to be improving at times only to relapse again. Six months into treatment I was diagnosed with Sjogren's syndrome which is an autoimmune disease often triggered by a severe virus. I am currently taking pain meds and pancreatic enzymes which I will do for the rest of my life. I am not sure if this info is at all helpful, but wanted you to know that you are not alone! Trixie