Hi everyone -
I am the one who started this thread, over a year ago...so, a little update on the subject:
I ended up have a stricture caused by the ileostomy reversal, which put me in the hospital for most of June and July 2008 (off and on - the longest stretch was a month). It took them awhile to discover the problem, as I presented as having a blockage, but they couldn't find it with films, etc. Finally it was found through colonoscopy. As a result, in the middle of July of 2008, I had to have another resection, this time of the small bowel, taking my cecum, terminal ileum, ileocecal valve, and my appendix. I was unable to eat most of June and July last year...I got to be under 100 lbs (I am 5'6", and weighed 130 when diagnosed). So, I basically didn't "have" a summer last year! After I healed from that surgery, I re-started my chemo, which finally ended the first week of January of this year.
I have had bowel problems of one sort or another ongoing. They attempted a rectal dilation a few months ago, but it didn't work. So,I was going to have another abdominal surgery in July of this year, to address what appears to be a "kink" from scar tissue. My regular followup scan showed that it appeared my cancer had metastasized to my lungs, so I had a thoracotomy instead, on July 10. Good news is they found no cancer...they are still not sure what the nodules that appeared to be growing were, as they couldn't find anything, and lung tissue biopsy was negative. I have a scan coming up at the end of Sept or beginning of October to see what is going on with the other lung...possibility I may still have the 2nd lung surgery, we will have to see.
Point is, that put the abdominal surgery/issues on the back burner. I am still having problems - alternating constipation and diarrhea, and off and on bowel incontinence (the last couple of days, actually, have been bad with the latter problem).
I DO NOT want a permanent colostomy. My ileostomy depressed me so much (and I developed sensitivity to the appliance adhesive, bad skin irritation problems) that I cannot imagine having to live with that again. My sensitivity to adhesive has become out and out allergic reaction - the surgical tape after my thoracotomy gave me huge blisters all over where it touched. They had to re-dress everything with paper tape. Ya can't use paper tape on an ostomy appliance.
I am hoping that my body at some point learns to poop normally. Right now I am always constipated, and the diarrhea is softer/liquid stuff that goes AROUND the backed up stuff, basically.
So that is the update.
12/07 dx RCA3C
2/08 bad rad, ER ileo
5/08 ileo td
6/08-2/10: 7 surg
09 lung mets, undx IV
9/10 failed RFA, dead 15 mins
6/12 growth, start Xeloda
8/12 add Avastin
2/14 Stop all