I've been on this journey for almost 20 years: LAR at 43, "cured" at 49, local recurrence at 52: surgery (part of sacrum/coccyx removed) , chemo, radiation. It was after the radiation got going that the big pain started, and I lost my ability to sit. Pain was poorly managed by a pain doc now undergoing adjudication for questionable relationship to pharma manufacturer. Was on massive doses of fentanyl/oxycodone. Lost my ability to defecate: doctors blamed this on my narcotics habit, but I think the surgeries and radiation also played a role. Now I help defecation along with a gloved hand. PT to learn how to sit again. Lung met at 55: wedge resection. With pelvic floor PT, I have managed to cut back substantially on the narcotics, still on 24-hour dosing, still having lots of pain. Two kinds of pain: what feels like a pronounced urge to defecate even though there's (probably) nothing there AND (usually upon defecation) agonizing rectal burning sensation. I want to get off the narcotics, but there's too much pain. I am unable to participate in life as fully as I would like and I am just tired of the rectal pain!!!!
Is there anything else I could do besides an ostomy? Was hoping to reverse the ostomy after I stopped taking opiates: does this sound plausible? I have gotten some relief from the burning with Canasa (mesalamine) suppositories. I used CBD oil suppositories successfully to address rectal spasm.
Thank you for reading!
resection for Stage 1 rectal ca Jan 2001, age 43
met to coccyx, part of sacrum Oct 08, surgery Nov 08
Folfox, 12 rounds, Feb 09-Sep 09
radiation Mar 09-Jun 09
funky lung CT Feb 2011; biopsy failed
met to lung resected Aug 2012