Opinions from spinal cord stimulator for rectum pain

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Gerry R.
New Member


Date Joined Mar 2017
Total Posts : 4
   Posted 3/23/2017 9:01 AM (GMT -6)   
I had my rectum removed in 1994. Have an ileostomy form many years. I have severe pain and burning in my rectal area. Looking into getting a spina cord stimulator for this. Any comments?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15006
   Posted 3/23/2017 11:28 AM (GMT -6)   
Hi Gerry & welcome to Healing Well. Glad you found us but sorry you need to be here. I have been hanging around Healing Well for a number of years & do not recall anyone having an SCS unit for rectal pain. I honestly do nor even know if a unit can be used for this type of pain. What I have seen them used for is back or neck pain or CRPS. Has your drs ever given you an explanation as to why you are having such difficulty?

My questions are have you checked into any of the websites such as Medtronics, Boston Scientist or St Judes to see if the units are for this particular pain? Is this something your dr has been discussing with you or what? Have you done a trial with one? Sorry for so many questions.

I know members in the past here many did not have any success with the units for one reason or another. I have to assume the ones they helped are living their lives.

Are you under the care of a pain mgt dr? Generally folks that are in the market for one of these units are under the care of a pain mgt dr. They do a trial to see if it may help. The old rule was if it reduced the pain by 50% it was considered a success.

There are a lot of factors to consider with these units such as; if you have a problem or a question about the unit your dr cannot help you, you will be told to contact the rep. Drs know nothing about these units, all they do is recommend them. Initially the first year or so you are are not charged for the initial tweaking of the unit, however, later on down the road when it needs to be tweaked you need to make sure your insurance will cover this. A lot of insurance company's will drag their feet for months & months with a lot of hassles in between before they will pay if at all. So, if you are needing something done quickly, you may be in for a big hassle. This costs several thousand dollars for these tuneups & yes they do need fine tuning after awhile.

The best advice I can tell you is research the units for your condition, check out the websites for the mfg's I listed here & see what you can find out.

Keep us posted. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 665
   Posted 3/24/2017 9:10 AM (GMT -6)   
Gary:
I also have an ileostomy with resection of my rectum, aka "Barbie Butt."

I can appreciate your level of rectal pain and discomfort, even in the absence of a rectum. The rectum is innervated with a high number of sensory nerve endings. People fail to appreciate the significance and importance of the rectum. It is more than a holding bin for feces.

Phantom rectal pain is very real pain following a proctocolectomy. The extensive sensory nerve innervation remains intact when the rectum is removed. The nerves are still there . . .

I gather you have tried the usual medications including amitryptyne, pregabalin, neurotin, elavil and the like.

I do have use of a compounded creme that contains an NSAID,
amitryplene, and ketamine.

I believe in the benefit of regular yoga. The poses and postures serve to stretch and mobilize the deeper tissues of the pelvis, providing purposeful sensory input to dampen errant or erratic sensory nerve firings. I also use warm buckwheat packs and use them between the buttock cheeks. A T-foam pad with a sacral cut-out has become one of my trusted friends for any long-term sitting.

I understand how desperate you can be for relief. Pelvic nerve pain is particularly taxing due to its sensory nerve sensitivity.
- Karen -

Thegetawaygal
New Member


Date Joined Mar 2017
Total Posts : 3
   Posted 3/28/2017 10:10 PM (GMT -6)   
Worked for a PM doc that did storms for rectal pain. Some pots it worked like a charm. It's only a trial first. If it works then have it implanted

Gerry R.
New Member


Date Joined Mar 2017
Total Posts : 4
   Posted 3/30/2017 4:54 PM (GMT -6)   
Thank you for your replies. I have tried neurontin and I am on Amitriptiline along with pain meds. It bothers me all day and night but the attacks are the worst and can make me crazy. I do take pain meds and I don't like to do that. I am still looking into spinal cord stimulators through a pain specialist as I don't know what else to do. It will be a trial at first. I have had many surgeries in this area before they removed it. Oh well, time will tell. Thanks again.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15006
   Posted 3/30/2017 5:44 PM (GMT -6)   
Gerry, I do hope that you can get some relief. Yes, you will need to do a trial to see if you get any relief. Please keep us posted. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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