Phantom rectum pain

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teachpdx
Posts: 606
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Phantom rectum pain

Postby teachpdx » Mon Dec 18, 2017 2:24 pm

I'm not sure if this is what's going on, but I'm five years out and still in pain. I've been through PT and with their help was able to release an adhesion 4 years post surgery.

My quality of life kinda sucks. I've got my bowels under control - it's the pain in my ass. Not a sharp pain but a throbbing pain. Standing is OK but sitting, bending over, etc - anything that causes me to bear down causes pain.

I can barely read a book on the couch or do a crossword puzzle. It may be damage due to radiation... Just wondering if any other rectumless peeps have a similar problem.

Peace,

Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Lee
Posts: 5534
Joined: Sun Apr 16, 2006 4:09 pm

Re: Phantom rectum pain

Postby Lee » Thu Dec 21, 2017 11:13 am

teachpdx wrote:.. Just wondering if any other rectumless peeps have a similar problem.

Peace,

Kristi


No I do not have any pain. Many years ago, I knew a man who was diagnosed 6 months prior to me (rectal cancer) who did live with constant pain. They finally determined it was nerve damage. Wondering could that be your problem too.

Have you been to a pain management specialist yet?

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Jsjdjwu
Posts: 1
Joined: Sun Oct 23, 2016 1:53 pm

Re: Phantom rectum pain

Postby Jsjdjwu » Sun Jan 14, 2018 6:24 pm

Hi kristi..yes..Im one year out apr surgery..same treatment as you and my pain is on and off.I get a strange pulling sensation and almost like a heafache in my ass area were the rectom used to be.Also feel pressure and heaviness.Defiantly feels like nerve damage pain.I sometimes use a heating pad or soak in an epsom salt bath which helps.along with either advil or asprin.Hope this helps.Thanks Theresa

MissMolly
Posts: 487
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Phantom rectum pain

Postby MissMolly » Sun Jan 14, 2018 9:37 pm

Kristi:
The lower rectum and urogenital structures of the lower pelvis are highly innervated by an abundance of sensory nerves. Next to the hands/fingers, the lower pelvis has the second highest preponderance of sensory nerve endings.

You have had physical therapy with I take it some success. Has anyone proposed use of Botox injections into either the pedundal nerve or pelvic splanchic nerves? Botox has shown fairly good use for phantom rectal pain and persistent pelvic pain.

Botox has a temporary effect. It does not have a permanent effect. The good news from this is that if Botox is not effective you have not permanently damaged the injected muscle or nerve. It Botox is effective, then you can repeat injections every 4-6 months to sustain the benefit.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

teachpdx
Posts: 606
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Phantom rectum pain

Postby teachpdx » Tue Jan 16, 2018 9:16 pm

Hi Karen,

I've pretty much have come to the conclusion that it's the levator ani muscle - smallish muscle that slings around the rectum. Without the rectum for support and having a rather wide pelvic opening (gave vaginal birth to 12lb child) I think it's too much for this muscle and there's a threshold where I'm just in pain. Bending and stooping not my friend as well as "proper" lifting. I can feel exactly where it is, especially whwn lifting.

Thanks for the suggestions but somehow I think any botox might leave me with fecal incontinence.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!


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