Chronic rectal pain post abdominal parineaum resection

[jubrd426]

      About 9 years ago (2000), my mom (now age 59) had colorectal surgery (abdominal-perineal resection with a permanent colostomy) at a branch of the Cleveland Clinic in Ft. Lauderdale, FL. to remove an orange-sized malignant tumor. Either due to radiation therapy prior to the surgery or to the severing of nerve-endings during the surgery itself, she has suffered from severe nerve pain in that area (rectum) ever since, and has been unable to sit, stand for long or lie on her back.
       For the last 9 years, she has been a pain patient.  Started on OxyContin just prior to the surgery, she was moved to a prescription of 40 mg. of methadone in 2005. From 2001 through 2008, doctors tried a nerve block, anti-epileptic medicines (Neurontin; Lyrica) and a variety of antidepressants. In July 2009, her pain doctor switched her from the methadone to Roxicodone, after attending a meeting that discussed the dangers of methadone-related overdose. The new medicine does not control the pain in its current strength. During a recent trip to the local emergency room an ambulance medic put a skin patch (Duragesic) on her back; she said it did not help, but then the ER doctor replaced it with a stronger one that brought the pain level down considerably. Now, she is back on 80mg. of Oxyconton every 6 hours, and it's not enough to combat the pain, so they want to put her either back on methadone, or suboxone.  She has been bed-ridden and alone, aside from her teenage son, who has been just as debilitated by the last 9yrs, thus, not of much help. I live across the country, and am trying to find some hope in this situation - a surgical procedure perhaps-  as an alternative to these opioids, which seem to just be killing her slowly.
     Any suggestions, or even connections to others in this situation, or to someone who may have good knowledge/advice to offer would be of great help.  Thanks.  
      

[jubrd426]

As far as I can see via the internet, your dad and my mom are the only ones experiencing this particular situation.  I continue to search for fellowship and solutions to this and come up empty-handed aside from stumbling over my 2 year old post, and your response.  Thanks for saying something, and I'm so sorry that your dad's in the same boat. I've read that it can take some time to recover fully though. Is your dad any better now??  My mom is even worse off after 11 years.   If I find anything I'll let you know, and will you please do the same?  We should keep in contact.

[cher159]

I realize this post is now 2 years old, but thought I would give it a try...
My father (otherwise very healthy) is 3 months out from the same surgery for treatment of rectal cancer. He is experiencing the same issues (increased narcotic use and inability to sit, stand or walk without severe perineal pain). He does not like taking the pain meds due to the way they make him feel (cloudy, "goofy", nauseated), but is dependent on them to get through the day. He is becoming more and more frustrated and depressed. Did you ever identify any successful treatment? Literature searches have provided limited results and I fear my father will continue to decline both physically and mentally unless something changes. Any input/suggestions are welcome.