Permanent Colostomy Surgery with PNE

[cph]

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

[janetm2]

Welcome CPH,
You have had some extra journey pieces and good to hear you have made it here. Sorry that you need to look into PN but hope the info and discussions help. The FAQs have a wealth of info with steps to take, symptoms to see how well you match up etc. Also includes pre-surgery tests, you did a nerve block but sometimes they want more than one and there is another pnmlt? You may be able to do as well. Other meds to try would be cymbalta, Lyrica and maybe Tramadol.
Best of luck and you are not alone.
Janet

[helenlegs 11]

Hi and Welcome cph,
I don't feel as if I have anything to offer apart from the welcome as you are so far ahead in this PN 'game' already and I have to admit to knowing nothing relevant to your earlier surgery and treatments, sorry.
Did the PN symptoms occur straight after your surgery? I have heard many recounts of that happening from others who have had bladder and bowel surgeries, mainly (maybe exclusively) for prolapses, but I have to admit to knowing almost nothing about that, having had no experience of either.Thank goodness.
What happened with the pn block you had? Was it totally ineffectual? and was it guided?
An EMG test isn't so necessary tbh. I haven't ever even been offered one, but thats our NHS for you. A good clinical examination by someone who knows about PN (there are a few experts listed on the home pages here) possibly followed by a guided PN block is usually enough to get THE diagnosis.
Any way I know that others will offer a warm welcome too and probably much better help than I have You see Janet got there before me
Take care,
Helen

[Violet M]

CPH, it sounds like your pain started after surgery, right? So it's possible you have developed some scar tissue entrapping the nerve but it's impossible to say for sure. Maybe you could have a 3T MRI using Dr. Hollis Potter's protocol to try to determine if there is apparent scar tissue. Shawn has posted some information on how to go about it in this thread: http://www.pudendalhope.info/forum/view ... =69&t=2490

Other possibilities are that radiation damaged the nerves. After my surgery I did some hyperbaric oxygen treatments and there was another gal in the chamber with me who had pelvic radiation damage and she was hoping to get some improvement but I don't know how well it worked out for her. If the nerves are damaged but not entrapped, obviously you wouldn't want to submit yourself to another surgery.

When you had your pudendal nerve block was it done under image guidance? Did you have any pain relief at all -- even for a few hours? Was the distribution area of the pudendal nerve numbed up pretty well? The anesthetic should have at least numbed up the perineum, rectal area, and genitals. If not, then the block may not have hit the right spot. However, if those areas were numbed up (temporary loss of sensation) but you got no pain relief then it may not be the pudendal nerve that's the issue.

When you have an internal exam of the rectum do you know if there is tenderness along the course of the pudendal nerve? Sometimes it's hard to determine this if your pain is so severe that everything is tender but a good physical therapist who is knowledgeable about PNE might be able to determine the source of the pain. I'm not talking about myofascial release treatment, as I see you have already tried that, but rather a diagnostic exam.

You seem very knowledgeable about your diagnosis and treatments already. I think if you could try to narrow it down to whether you are dealing with either scar tissue or radiation damaged nerves that might help you decide what direction to take next.

It sounds like you've been through a lot and that meds aren't very effective for you. I'm sorry for this difficult journey you are going through and I hope you can find some answers. There are a couple of other options I can think of that you haven't listed but again, it would depend on whether you have radiation damage or scar tissue.

Violet

[Anne smith]

Hi cph
I have had an iliostomys now for thirty three years now and after the first twenty one years past nicely I started with p.n.e
It took me ten years to get my diagnosis! (all I came across was ignorance ) and throughout this period noticed that other people with iliostomys were writing letters in our quarterly journel complaining of the same thing! So I started a servay and it has took me many years to colate letters and phone conversations to realise that people with ostomys( whether colostomy or iliostomys! Whether rectoms removed or not) do definitely have a pre disposition of getting p.n.e.
I would be gratefull, and it would certainly help my reasearch if any other (ostomys) sufferers would please contact me, as I feel that with enough information in time! It could put an importance on how our bowel surgions operate!
Anne smith

[lightmail]

I had an illeostome 20 years ago. Makes it difficult to have certain tests and PT. (no rectum) I don't believe in my case that surgery was the cause of my pne.....Robert

[Anne smith]

Light mail
I'm sure you know your body , and also your personal history! And I respect that! But if you ever want to know my findings(collected over the last few years) I will be only to happy to share with you) my best wishes
Annevsmith

[cph]

Thank you all for your prompt, kind and helpful replies. I will respond to you amidst this new post. It’s always a challenge for me as to how much information to provide to be helpful, and yet where to draw the line for relevancy. Here goes…

I continue to actively pursue new approaches and techniques to manage my pain doing research in reputable areas, such as this Hope forum on the internet and meeting with several regional doctors and specialists … this is an ongoing journey for me. My initial posting was to provide background and history, now I’ll try to do some catch-up on things-in-progress and include responses to your comments and suggestions.

Janet – thanks for the HOPE forum navigation tips, very helpful! Also, I have had 3 nerve blocks… but more may be in the works as you will see below.

Helen – thank you for your warm welcome; yes, the PN symptoms immediately followed my Abdominal Perineal Resection (permanent colostomy) in Jan 2010, and have been ever present ever since. My Pudendal Nerve Block and my two Ganglion Impar Blocks were all fluoroscopically guided.

Violet – scar tissue issues have been suggested by my surgeon and Pelvic Floor PT who has practiced myofascial release and connective tissue massage as well as providing me with at-home exercises (which I do as well as walking a mile each day). Pelvic radiation damage is definitely a concern (one I need to look further into), I had 30 sequential days of radiation directed at my rectum. The nerve blocks provided no relief at all – for that reason additional are being considered below. Unfortunately, an internal exam of the rectum is out of the question for me. Thanks for your caring, very much appreciated.

Anne – Thank you, I’ll be contacting you regarding your survey, sounds interesting and I will be glad to provide additional details that might be helpful.

In addition to my cancer and related surgery, I have another significant medical issue (which I will not get into here) all of which cause me to have a medical team approach to my treatments and meds and a need for sharing amongst my Doctors. While they may not all agree, they do voice their opinions. And as you all know, scheduling needs to be done well in advance and conflicts always arise.

In February 2012, I became aware (through this HOPE forum) of Dr. Mark Conway in New Hampshire and I contacted his office. In May, we scheduled for June 28, 2012 a consultation and Pudendal Nerve Block. In the interim, I had been scheduled through my cancer surgeon for a second Lidociane Infusion for June 25, 2012 – all the same week, last week! I was advised by both offices, to cancel one or the other nerve treatment but not to proceed with both the same week. I kept the consultation with Dr. Conway but canceled the pudendal nerve block, keeping the second lidocaine infusion. As I was anticipating last week’s appointments, I made my initial post to this forum.

The June 25, second Lidocaine Infusion was totally ineffective (as the first had been).

On June 28, I met with Dr. Conway, who proceeded to examine me (note – I am sealed up down there). Dr. Conway recommended the 3T MRI, which is scheduled for this Sunday, July 8th , 8am at Rhode Island Medical Imaging. Once the MRI results are in, Dr. Conway will review them and prescribe the next steps, such as Pudendal Nerve Blocks to be delivered in N.H.

I will update you as to my progress and will contribute in the forum if I can add value.

Thank you all once again, you’re the timely dialogue backed by your experience and caring is invaluable!

CPH

[helenlegs 11]

Hi again CPH,
You really have been through the medical mill, again and again haven't you!! Was the lidocaine infusion because of on going cancer pain? (you don't have to answer that one if you don't want to) I hadn't heard of it, so looked it up and found it has be used for neuro pain too, I suppose any pain depending on if sodium channel blockers work for the individual. Seems they don't for you unfortunately.
At least you have got on to the first stages of PN diagnostics, I do hope that the scan shows something (they don't always) so that some targeted treatment can ensue.
Take care,
Helen