Permanent Colostomy Surgery with PNE
Posted: Tue Jun 26, 2012 8:41 pm
Hi everyone! New here! I’m actively engaged (as so many others are) in a search to reduce my pelvic floor pain.
My name is CPH, 62 yrs of age, male, from Massachusetts. I was diagnosed in 2009 with Rectal Cancer Stage 3 and amongst other stuff, had 30 days of radiation to the rectal area, a permanent colostomy in Jan 2010, and a whole lot of chemo before and after surgery. Surgery recovery in the pelvic floor never quite turned out as hoped.
I’ve read many of the postings here, my heart goes out to so many, and in turn you’ve helped a great deal in my understanding that I am not alone in my pain and journey. I’ve tried to summarize my lot, as it relates to the pelvic floor issues – where I’ve been, where I am …. unsure of the future. I may not have specific questions, but talking is good and may lead to helpful dialogue – and perhaps I’ll be the first poster with a permanent colostomy – that’s ground breaking
Since surgery through today, about 2 ½ yrs, I have the following pain symptoms in my pelvic floor:
- feeling of having a bag of broken glass in my rectum at all times
- wire like cutting at the inside of my upper thighs, particularly when I bend even slightly
- hurtful pain at the top back of my scrotum particularly when sitting
On a scale of 1 to 10, I’m at about a 7 most of the time, 24/7.
As so many others have posted, I too spend a great deal of my conscious time standing or resting on a side.
I have had no success with several meds which include:
- Nerontin (gabapentin) 8/19/2010 360mg - phased up 3200 mg/day stopped in 7/2011 – ineffective
- Oxicodone – 2/2/2010 2 x 5mg x every 4hrs for pain - ineffective
- Celebrex – 100 mg 2x day – 5/26/2011 - ineffective
- Amitriptyline – sedates me – used as needed to sleep at night
- Lidocaine patch 5% - very slight reduction in pain (while wearing) for a couple of hours to back of scrotum & upper inside thigh but not at rectal area
- Starting Fentanyl patch 6/27/2012.
Therapies, which have all been ineffective include:
- Ganglion Impar Nerve Block – 2x – 2010
- Pudendal Nerve Block – 1x – 2011
- Acupuncture with electrical - 17x - 2010-2011
- Neuro stimulation to spine – 2011
- Reiki – 10x - 2010-2011
- Lidocaine Infusion – 2x – 2012
- Physical Therapy with a Pelvic Floor Disorder 2011-2012 - about 24x with:
o Interferential stimulation (current)
o Myofascial release (connective tissue massage)
- Psycological / Hypnotheraphy – 2011-2012 - 18x with:
o Relaxation/distraction therapy
o Imagery therapy
While I’ve been thinking of Pudendal Nerve Entrapment as the issue and that Pudendal Nerve Decompression might help me, I’m left with the following issues:
- I’ve done an advanced search in this forum and have found no other postings by anyone with a permanent colostomy which causes me to wonder about additional risks or complications
- It’s unclear to me how or what relevant testing pre-PND surgery could be done, I can not have an EMG since I have no "access port".
Thank you all for allowing me to post here!
And if there are others with perhaps a similar background and might wish to contact me, please do, I am fully open to contact and to share my experiences and learnings.
CPH
My name is CPH, 62 yrs of age, male, from Massachusetts. I was diagnosed in 2009 with Rectal Cancer Stage 3 and amongst other stuff, had 30 days of radiation to the rectal area, a permanent colostomy in Jan 2010, and a whole lot of chemo before and after surgery. Surgery recovery in the pelvic floor never quite turned out as hoped.
I’ve read many of the postings here, my heart goes out to so many, and in turn you’ve helped a great deal in my understanding that I am not alone in my pain and journey. I’ve tried to summarize my lot, as it relates to the pelvic floor issues – where I’ve been, where I am …. unsure of the future. I may not have specific questions, but talking is good and may lead to helpful dialogue – and perhaps I’ll be the first poster with a permanent colostomy – that’s ground breaking
![Very Happy :D](./images/smilies/icon_e_biggrin.gif)
Since surgery through today, about 2 ½ yrs, I have the following pain symptoms in my pelvic floor:
- feeling of having a bag of broken glass in my rectum at all times
- wire like cutting at the inside of my upper thighs, particularly when I bend even slightly
- hurtful pain at the top back of my scrotum particularly when sitting
On a scale of 1 to 10, I’m at about a 7 most of the time, 24/7.
As so many others have posted, I too spend a great deal of my conscious time standing or resting on a side.
I have had no success with several meds which include:
- Nerontin (gabapentin) 8/19/2010 360mg - phased up 3200 mg/day stopped in 7/2011 – ineffective
- Oxicodone – 2/2/2010 2 x 5mg x every 4hrs for pain - ineffective
- Celebrex – 100 mg 2x day – 5/26/2011 - ineffective
- Amitriptyline – sedates me – used as needed to sleep at night
- Lidocaine patch 5% - very slight reduction in pain (while wearing) for a couple of hours to back of scrotum & upper inside thigh but not at rectal area
- Starting Fentanyl patch 6/27/2012.
Therapies, which have all been ineffective include:
- Ganglion Impar Nerve Block – 2x – 2010
- Pudendal Nerve Block – 1x – 2011
- Acupuncture with electrical - 17x - 2010-2011
- Neuro stimulation to spine – 2011
- Reiki – 10x - 2010-2011
- Lidocaine Infusion – 2x – 2012
- Physical Therapy with a Pelvic Floor Disorder 2011-2012 - about 24x with:
o Interferential stimulation (current)
o Myofascial release (connective tissue massage)
- Psycological / Hypnotheraphy – 2011-2012 - 18x with:
o Relaxation/distraction therapy
o Imagery therapy
While I’ve been thinking of Pudendal Nerve Entrapment as the issue and that Pudendal Nerve Decompression might help me, I’m left with the following issues:
- I’ve done an advanced search in this forum and have found no other postings by anyone with a permanent colostomy which causes me to wonder about additional risks or complications
- It’s unclear to me how or what relevant testing pre-PND surgery could be done, I can not have an EMG since I have no "access port".
Thank you all for allowing me to post here!
And if there are others with perhaps a similar background and might wish to contact me, please do, I am fully open to contact and to share my experiences and learnings.
CPH