Thanks everyone for all the info and feedback on my last post -
mesenteric vein 'soft tissue' restriction w/clot - J-Pouch related??

Just a quick update and then some questions:
It's 7/1 and I'm still in PENN since i need IV drugs to deal with the pain. Thanks to the pain meds and a good dietitian I've been able to stabilize my weight loss and it hasn't changed in the last week.

Had an abdominal MRI, tried to biopsy without surgery to no avail and since my symptoms fit lymphoma all agree a biopsy is necessary. I go in tomorrow for a surgical biopsy to grab some of the lymph nodes and questionable tissue. Hopefully it'll be just a standard surgical biopsy, but it'll all depend on what it looks like on the inside from the previous surgeries. Crossing my fingers for no serious complications but it's a little scary since this'll be my forth major abdominal surgery. The 'density' also happens to be right around the SMV and SMA. Dr. Morris, who is apparently THE guy for GI surgery here is doing it himself which is a little comforting.

Two tentative diagnoses are lymphoma or sclerosing mesenteritis with heavy emphasis on the later. Nobody really thinks its lymphomia but the only way to rule it out is with a biopsy. sclerosing mesenteritis is apparently extreamly rare, so lucky me.

So, anybody know anything about probabilities of post operative complications from the surgery?
Anybody know anything about sclerosing mesenteritis or any connection UC or a J-pouch would have with it??
Anybody have anything done by Dr. Morris at Penn?

Thanks for any info, or for taking the time to read this.
Todd

This message has been edited. Last edited by: CNJTodd,

If it does wind up being sclerosing mesenteritis, then they may want to take a closer look at your liver, since this can be associated with PSC (primary sclerosing cholangitis), which is associated with UC. The big issue regarding your surgery would not be regarding biopsies, but if it was decided to try to remove the mass, since it involves some pretty major blood vessels. It could wind up in resecting that portion of small bowel. This is a very rare disease, so not much information on it.

http://radiographics.rsnajnls.org/cgi/content/abstract/23/6/1561

Jan

Thanks so much Jan -
The MRI showed more of a density then a mass, although I've heard it called both. Surgically this is supposed to be it. If it's lymphoma it's radiation and/or chemo. If it's the other then they're talking immune surpresents etc. I've done some research on my own and it's apparently extreamly rare. So rare that i have a hard time excepting it as a diagnosis, but i guess if they treat me for it and i get better I'll have to. Still doing the 'no cancer' dance to cancel out the bad joo-joo.

I'll be checking up to around midnight tonight if anybody else wants to comment. Otherwise I'll be out of contact for the next couple of days while I recover. Sorry for the last minute questions but the damn internet went down from Friday till this afternoon.

Wish me luck and everyone enjoy your 4th for me
Todd

I feel your pain. I am one of those types who want to know something inside out and sideways and to be confounded with minimal information is frustrating, to say the least. It cannot be much fun to know you are close to a medical oddity!!

Good luck and smooth sailing!

Jan

Hi Todd,

I don't have any info for you but if it helps I've got my fingers crossed for you that everything works out OK. Hang in there,

Suzanne