new bowel incontinence, nerve damage

[norder]

After 3 years of constant severe neuropathic pain I have finally been diagnosed with nerve injury / compression at around T12. This is now causing me to be unable to control bowel movements first thing on a morning. I wake up and the bowe; goes crazy. The sphincter muscle is ok but I have barely 5 seconds to get to the toilet. When I go, pain rips up my spine and I pass out. This can happen anything from 1 to 9 times a day lasting up to 2 hours until the bowel is empty. Up to December I had constipation from taking opiates for the pain. I am no longer constipated. I can feel the bowel fluttering violently before I pass huge amounts of gas and then the bowel empties. The pain can take all day to calm down. MY GP has referred me to a bowel specialist but not a neuro surgeon and this could take 12 weeks wait. I'm terrified both of the pain and of the ultimate outcome. Please tell me if you think this could be fixed if the tethered nerve can be released or if not, what can I expect? Oxycodone helps the nerve pain but not the bowel pain and the fainting. I am so scared of having to live the rest of my life with this. I have tried all the other treatments for severe nerve pain and can't take anything else. It seems as if the bowel gets paralised at night when my back arches and releases as soon as I wake up and move.
Please help, I'm at my wits end.

[SCI-Nurse]

Peripheral nerve injures that affect bowel control nearly always cause a flaccid anal sphincter, yet you say your sphincter is normal. The anal sphincter is innervated by S2-4, so would not be effected by a T12 root compression. The bowel above the anus is controlled by autonomic nerves and are rarely effected by either peripheral nerve or cord damage unless it is above T6. It is not common for bowel spasm to be caused by either peripheral nerve or spinal cord damage. I suspect you may have an additional problem such as IBS (irritable bowel syndrome). What has the GI physician said about this?

I would at least recommend that you use something to "firm up" your stool for now, as this makes bowel control easier. Some find Imodium helps with this, and I often recommend the use of calcium polycarbophyl (one brand name is Fibercon).

(KLD)

[norder]

According to my GP, he says what I read on this website, that "If the spinal cord injury is above the T-12 level, the ability to feel when the rectum is full may be lost. The anal sphincter muscle remains tight, however, and bowel movements will occur on a reflex basis. This means that when the rectum is full, the defecation reflex will occur, emptying the bowel."

This is what he thinks is happening; a reflex emptying without any warning.
I have tried immodium and the fibre drink you suggest which here is called Fybogel. Fybogel is useless but immodium works. Before Christmas I only had this problem occasionally because of constipation from the opiates. I long now to become constipated because the pain from going so suddenly and so often is really bad. I have only been able to leave the house 5 times since Christmas because I never know when it is going to strike. I was diagnosed with IBS years ago but never like this. I also have diverticulitis but not at the moment.
This has all become much worse since I wnet to an osteopath!

[SCI-Nurse]

Without really knowing where your damage is, it is hard to determine what is going on. Have you seen a physiatrist?

When you said your anal sphincter was normal, I assumed this meant both normal tone and voluntary control. If that is not the case, then you need to do a regular daily (or more often) bowel program to evacuate your bowels.

Fibercon is not a drink. Be sure you are getting calcium polycarbophil, not just any fiber product (usually psyllium or something like that). Fibercon works much differently and should firm-up your stools. You need to keep your stool very firm (almost hard), then use a bisacodyl suppository within 30 minutes every day 30 minutes after a meal (the same meal daily) and get on the toilet. Explosive stools and cramping or bowel spasm is not part of SCI upper motor neuron neurogenic bowel, so I suspect you have more than this going on.

Please download and read the booklet you can get here (for free):

Neurogenic Bowel: What you should know

Designing a bowel program from scratch is not easy. It would be best if you could see an experienced SCI or rehabilitation nurse who could help you with this.

(KLD)

[norder]

Thank you very much. I will look into calcium polycarbophil.
We don't have any doctors here called physiatrists. I'm not sure what they specialise in. We have neuro surgeons, orthopaedic surgeons and bowel specialists. I've had real difficulty seeing the right person about this getting pushed from one consultant to another, each of whom says it's not their speciality.
I do feel much better if I am constipated because even then I can pass a bowel motion but without the urgency. It's never explosive, just immediate and leaves me feeling like I've had a really bad bout of diarrhoea which it isn't. But I still don't get any warning symptoms, just pain and a sudden urge. The anal sphyncter is fine, I can stop half way through, I just can't wait above 5 seconds. I get no warnings of a full bowel at all until that last 5 seconds. Pain,pressure, gotta go and then I feel faint, sweat profusely and get terrible pain ripping up my spine. Probably the most distressing constant symptom is the rapid fluttering, pulsing sensation I get down my left abdomen as soon as I wake up. Then when I stand up, I can feel gas rushing down the colon. Once that has gone I get anything from 2 to 10 minutes grace before the urge to empty the bowel.. I have severe neuropathic pain around L5 and across the back of my left iliac crest, down the left abdomen and across the front of my bladder area, all round my buttocks and between my legs. Now I have it at T12 too. Doctors simply ignore the fluttering/pulsing and say it must be muscle fasciculations but it's definitely the colon.

[metronycguy]

norder are you on any other meds?

[SCI-Nurse]

Where is "here"? Both Canada and the USA have physiatrists in nearly every community. These are specialists in physical medicine and rehabilitation (PM&R).

GI (bowel) doctors generally know nothing about neurogenic bowel programs.

If you tell us where you are (and complete the rest of your profile) we might be able to direct you to some more appropriate resources.

Your bowel issues as described are not from your spinal cord or peripheral nerve damage. They sound much more like IBS. If you have seen a GI doctor already and he/she has not suggested this, I would strongly recommend getting a second opinion.

(KLD)

[norder]

I'm in the UK.
My doctor is certain that this is NOT IBs. I have had a supposed trapped nerve for 3 years but no one can tell me where. The NHS in the UK is a noghtmare. My Osteopath, a neurophysiologist and my pain consultant all say there is a problem at T12 with the nerve that tells the bowel when it is getting full. I am getting no messages until the bowel is ready to empty. The normal peristalsis is not sending and messages to say what is happening. The neurophysiologist after nerve conduction tests says that the nerve to the bowel is damaged (iliohypogastric) so I am getting no warnings until the rectum is full and the anal sphyncter tells me to go. I also do not have any nerve supply to the bladder wall although again, the bladder sphyncter is fine and I can eliminate using my abdominal muscles. I don't know what else I can tell you except that the pain from T12 down the left of my spine and across the back of my hip is unbearable.
The only medication I've been given is Oxycodone, colpermin (pepermint oil) and ant inflammatory gels to rub on.
I wake up with strong fluttering/pulsing in my left lower abdomen followed by massive amounts of gas followed immediately by the uncontrollable urge to empty the bowel. This happens up to 10 times within 2 hours. One the bowel is empty I just have the spinal pain for the rest of the day and no more urgency. I have pain and numbness down the inside of my left leg and uner my foot and have woken several nights with no feeling in my left leg and unable to move it until I twist my torso , then the movement comes back.

[SCI-Nurse]

Again, most people with true SCI have NO SENSATION of their bowel or anal sphincter at all. The way this is managed is to do a routine bowel program at least daily, to cause evacuation at a set time and place, assure you are empty, and prevent accidents. If you will download and read the booklet above, it will provide you with this information.

The bowel spasms, excessive gas, etc. you describe are NOT a product of spinal cord or spinal root damage. The nerves that cause peristalsis would, if anything, cause a slowing of the bowel and more constipation and less peristalsis if compressed. I think you need another opinion about the IBS. It is possible to have both IBS and a spinal root problem, but the spinal root problem does not cause these IBS type problems.

Empting your bladder by straining or doing Crede like this is potentially very dangerous and an outdated method (because we know it is dangerous). You need to see a good urologist, get urodynamics testing, and probably do intermittent catheterization.

By the way, there are physiatrists and rehabilitation nurses in the UK too. Ask for a referral to a SCI center if you think this is entirely due to spinal cord damage.

(KLD)

[BeeBee]

Lactose Intolerance issues? Also, wheat/gluten sensitivities can reek havoc.