So, I've been pretty negligent about writing here or over at Dear Evangeline as of late, mostly because I've been sick. But, like all the other times I've been diagnosed with something strange and snarly, I'm coming here to reach out to all of you IBD gals and girls to hopefully connect with someone else out there that is going through similar crap (why is it so difficult to avoid puns when talking about IBD?).
So three hospitalizations so far for 2014, but thankfully the last one yielded a definitive diagnosis: Peritoneal Inclusion Cyst. Here's the issue: they are exceptionally rare and even in the vast metropolitan area of our nation's greatest city I am having trouble finding a surgeon/doctor that has experience with PIC. In fact, my surgeons and doctors have spent the past two weeks passing the problem along from one to the other and then back again. GI thinks its in colorectal and GYN court, but neither GYN nor colorectal surgeon want to take it on and keep passing me along like a hot potato. GI and radiologist think this enormous tumor/cyst (measuring 12 x 11 cm. and containing 500cc's of fluid) is causing my bowel blockages and rectal bleeding as it is causing major displacement and distortion of my J-Pouch, while pushing against the site of anastamosis and seemingly causing loops of small bowel to twist. Colorectal and GYN don't agree and believe I have additional adhesions higher up in the bowel causing these recurrent blockages and have diagnosed me with "chronic small bowel blockage." All agree something needs to be done about the PIC, though, but no one wants to take care of it.
So, IBD brethren, I come to you for help. I am on my way to Interventional Radiology to see if it can be drained percutaneously (though I have been told there is a low probability of this being effective as I have many adhesions in the way). Next step is another major laparotomy. Problem is, no surgeon wants to touch me. The cyst is occupying my right abdominal cavity, shifting my organs over to the left and is interfering with many different systems, making it easy for my GYN and colorectal surgeons to wash their hands of it. If IR doesn't work, I'll need a surgeon. Anyone have any NYC recommendations? My docs have been consulting with GYN oncologists, but they too want to bounce it back to colorectal. So who the hell will do this surgery? Anyone? Anyone? Of course crossing my fingers big time for a successful IR intervention.
In my brief research on PIC, I noticed that almost everyone out there that is so lucky to encounter one also has IBD, usually Crohn's. So- any of you Crohnies out there know anything about PIC?
It seems as though only 228 cases have been reported in the past 19 years, but hoping one of my readers is one of them.
And lightening strikes again…..