Thanks again everyone. Compiling records & paperwork for a 10/15 visit with Shen. Also organizing papers for disability for the time being. I've been in such pain for the 3 yrs I've been out of college I haven't made it much farther than working for myself as a consultant and am now not able to keep up with that. Very worrying at 27.

My HIDA scan came back normal, so that's ruled out for now. Visit & scope with Dr. Shen was pleasent. He believes I have a pouchitis characterized by backwash ileitis instead of Crohn's. We've sent him old colon tissue & liver biopsies to examine.

He prescribed Entocort/Tindamax/Lactulose to start and it is cooling down the inflammation and thickening stool as we speak. No resolution to the immense upper abdominal/back pain though, we will look more into that on future visits.

Does anyone else take Tindamax? It's really, really expensive and we have no presciption coverage. I can't find a pharmaceutical who issues it through patient assistance...

I read somewhere that Cleveland Clinic may be able to help you with prescriptions if you are not able to afford it because of insurance. Or maybe you can contact the pharmaceutical company and ask if there is anything they can help you with. They might because they will be interested that the drug is being used for other purposes than it was originally intended for. It is difficult because I am paying about $545 a month out of pocket for insurance so I can get prescription coverage. I have been on Tindamax and it almost pays for itself with all the meds I take off and on.

I took Ted's advice and contacted Entocort's manufacturer. They don't do any pat. assistance of any kind on that. Even Dr. Shen commented that they are jerks.

Condition update: Entocort/Lactulose/Tindamax controlling number of bathroom trips & reducing urgency. Dr. Shen suggested I stop Tindamax and save for emergencies. IgG4 blood levels unusually high, suggestive of Autoimmune Pancreatitis or Autoimmune Pouchitis. Anyone going through this? Back pain is intense and boring and can't gain weight no matter what. Treatment of course is prednisone & 6MP (isn't that true for everything?) but sounded like it could be controlled. Pancreatic doc Dr. Stevens at Cleveland ordering MRCP & Endo Ultrasound to better image pancreas. Going to try to get off of Ultram and use Darvocet instead. After a year of use I'm suspicious that it's making things worse. I can't go more than 6 hours without one and I'm reduced to a shaky, sweaty, confused state. Top it all off, girlfriend is taking my 1 year old and leaving me for a young artist boy she's been secretly working on for months. She didn't like my medicated zombiehood, even though I stood by her during an unwanted pregnancy, pushed as hard as possible to be there several days a week and always able/active enough to play with my son. So much for trying really hard. Really (and in jest), how does anyone survive all of this?

Sorry to hear about all of that Michael. It just complicates things when children are involved. I suggest you talk to someone. It's hard enough going through all of the stuff we go through, much less dealing with a relationship ending. Everything happens for a reason and you will be fine in no time. Best advice I may have ever gotten was from my Grandmother when things were going bad. She used to say "and this too shall pass"

Dr. Stevens at Cleveland performed an Endo Ultrasound to rule out auto-immune pancreatitis. Everything (including all other gastric tissue) looked normal. Yet I still have a very elevated IgG4 number suggestive of heavy inflammation somewhere (PSC? Pouch?) and terrible epigastric pain boring through to my back. We live 4 hours from Cleveland and fasting+no pain meds+long car ride for a 9am scope had me a wreck and the poor doctor was frankly surprised after meeting my medicated self weeks prior.

They've suggested randomly trying prednisone to see if I respond, or performing nerve blocks. Has anyone had a nerve block for ab pain? It seems that they are temporary and not guaranteed to work but I may not have too many other choices. I'm worried the pain could be numbed but the distension, appetite loss and sickly, grinding feeling going on in there would remain.

Thanks to everyone for their wishes, advice and sharing!

I went thru this for 2 1/2 years. Gall bladder tests, scans, etc came back normal. Same pain and symtoms like you. Saw numerous specialists. I pretty much gave up and learned to live with it. Then, one night I had the worst pain-I thought I was going to die. Went to the ER and guess what-next day gall bladder out. It was pretty messed up.
Good luck, I hope they find out what it is.
Susan

Glad to know you found relief. I think we're going to try a diagnostic nerve block to see if the pain goes away, then perhaps try a prednisone round since I responded a year ago. They suspect I have a neuroma from my several surgeries/infections, where a nerve was disconnected and is firing constantly trying to find it's other end, sending pain signals all the time. I just had an endoscopic ultrasound to rule out pancreatitis, and the functions were fine. I'll soon be doing an MRCP with Secretin to make sure Pan/GB is okay. I have an elevated IgG4 number suggesting some type of autoimmune inflammation and prednisone mostly stopped the pain last year, so who knows. Always a learning experience.