The Colorectal Cancer Alliance Exchange

Diagnosed w/colon cancer and Valley Fever in 02. Radiation and chemo, then surgery 9/11/02, chemo 3 more months. 04 transferred to Fl. follow up tests showed cancer metastasized to both lungs. Surgery on left lung 11/04, chemo until I "got strong enough" for second surgery on right lung which happened in Feb 05. Chemo resumed. Tests showed negative through 06 until December, cancer returned to right lung. Given 18 months WITH surgery and chemo. Decided no more chemo, surgery, returned to Ca. Saw my oncologist, asked me to talk to surgeon, then make decision. After several consults, gave it one more shot, surgery but no chemo. Surgery was 11/01/07. Just had all my tests repeated, no cancer found anywhere. Given another chance, been blessed.
Long story longer, since the first two lung surgeries, I've had terrible, chronic pain in and around my entire rib sections. Was put on Oxycontin by oncologist in Fl. but was afraid of being on it constantly. During my recovery from last surgery on lung, colleague of my sister who started Palliative Care unit at hospital visited me and with some trial an error, he had me off the Oxycontin and put on Methadone. I get the relief, no problems with daily activities, work or anything even with the quantity I'm using. Problem is my unpredictable bowel/colon activity. No rhyme or reason, one or two good days but no movement, then incredibly painful abdominal pain, unable to pass any gas, little I can do but wait it out. Then when it does start moving, I'll spend three to four days staying next to restroom, never knowing if/when it'll start, stop. But, regardless of what is happening, it's not your hard, dry stool by any means, not even a thick paste, but just will not move without some serious pushing (I know, it's bad), manual pressure to ascending, transverse, descending to move things along.

I've gone to different gastro specialists in Ca. and they say it's just the meds, get used to it, pump fibre, drown in double doses of Miralax with handfuls of laxatives and stool softeners three plus times a day. But that doesn't help with any regularity, I'm bloated every single day, I can only eat a child's portion before feeling stuffed. But, I don't remember having this problem from the beginning of the med changeover. It's only been since 09 that it came on with a vengeance.

Not to look the proverbial "gift horse in the mouth", but my dilemma is compounded because I was recently laid off from a job where I was able to work from home. The chances of finding a job working at home are slim to none - with my plumbing, I'm afraid of an unexpected movement or constantly disappearing to the restroom the better part of days, unfair to any employer and I couldn't do it. I've canceled numerous family functions, changed my whole way of life and trying to figure out how to move on because of it. It strained a relationship, the cancer taking a toll, then this being the final straw, was just too much to deal with, understandably.

I've fought the fight with everything I've got to beat the cancer only to be knocked back and down by this. I've tried all the doctor's recommendations, given everything a good chance to work or not. Diet, probiotics, you name it, I've done it/am doing it (yes enemas too). I reduced my dosage of Methadone by half with doctor's knowledge and guidance, very uncomfortable but there was no difference in plumbing activity.

So, short of getting completely off the medication, I'm appealing to anyone who might have experienced something similar, if there's something, anything out there that's maybe worked for them that I could try or run past my team of doctors. There is a medication but by injection only, specifically for Methadone related constipation, but daily, and I've already had enough punctures for several lifetimes, not to mention its not covered by my insurance.

Sorry for the long-winded life story. But, I'm really frustrated and hoping there's something.