Previous Thread
Next Thread
Print Thread
#242949 - 10/28/12 05:35 PM anyone with bowel and bladder control problems?  
Joined: Jan 2010
Posts: 3,148
cemc Offline
Registered Visitor
cemc  Offline
Registered Visitor

Joined: Jan 2010
Posts: 3,148
UK
I am interested if anyone else has bowel and bladder problems that are similar to incomplete spinal cord injury problems, and if so, how you manage it, and whether you have any real evidence for what it is that is impacting on the spinal cord and causing it.

I've had several people look at my lumbar spine imaging (but not other areas of my spine)and say that there isn't enough to cause spinal cord compromise, and yet I have all the consequences of an incomplete spinal cord injury, without ever having had an accident that would have caused that (but with having had 40 years of spinal pain). I have had neurogenic bladder (areflexic, atonic) diagnosed, but no interest from urologist or rheumatologist in figuring out why, and bowel is now going the same way.

I'm waiting for another neuro review, but just wondered if anyone else deals with SCI type problems caused by spondyloarthritis. Also what your actual "injury" or damage is. Its getting to be a bit more of an issue now for me, because I have now developed a rectocoele that is likely to need surgery, and if I don't get an effective bowel management programme then surgical repair isn't going to work (or it will just damage again).



Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
#242950 - 10/28/12 06:30 PM Re: anyone with bowel and bladder control problems? [Re: cemc]  
Joined: Oct 2008
Posts: 93
JTip Offline
Registered Visitor
JTip  Offline
Registered Visitor

Joined: Oct 2008
Posts: 93
Houston, TX
Your situation sounds very much like mine. The last neuro I saw didn't want to touch me with a 10-foot pole. He basically said that I would need to have the bladder problem evaluated by a urologist and the bowel problem by a specialist in neurogenic bowel.
Like you, I have no medical evidence and none of my docs seems interested in helping out in that department. I contacted the local SCI US chapter for help, but the rep who sounded so encouraging on the phone never got back in touch.
Lack of medical evidence will not help my disability application, but I'm moving forward anyway. I'm without health insurance and without income.
My bowel routine is adequate but not stellar. Send me a PM for details, as these are not dinner-time topics, lol.
So sorry that your bowel issue is progressing in a damaging way. Mine could be, too, but I may not know until it is way past too late.


Female age 64. HLA B-27 negative spondylitis, inflammatory bowel disease, M-type MGUS, incomplete cauda equina syndrome, osteoporosis, peripheral neuropathy, asthma. Humira, low dose prednisone, tramadol, nortriptyline at bedtime for neuropathic pain. Daughter 37 has B-27 positive AS.
#243042 - 10/30/12 04:00 AM Re: anyone with bowel and bladder control problems? [Re: cemc]  
Joined: May 2012
Posts: 152
babygirl536 Offline
Registered Visitor
babygirl536  Offline
Registered Visitor

Joined: May 2012
Posts: 152
san diego, CA
hmm. bladder issues, but havent brought it up. never thought it could be related. i have:
Extruded Lumbosacral Disc (L5)
Intervertebral Disc Degeneration
Lumbar degenerative disc disease
Lumbar Radiculopathy
'hidden' muscular/nerve issues (they seem to not show up in tests)


Female, 29 - loving wife & mommy to one <3
Finally diagnosed in Oct 2011
HLAB27+
Remicade - Oct 2012
Fibromyalgia - June 2013
Tendonitis - February 2014
Humira: Failed / NSAIDS: Failed / Steroid Epidurals: Failed, caused more pain / Physical Therapy, Massage Therapy, and Chiropractics: Failed / gabapentin: Failed
#243052 - 10/30/12 08:46 AM Re: anyone with bowel and bladder control problems? [Re: cemc]  
Joined: Jan 2010
Posts: 3,148
cemc Offline
Registered Visitor
cemc  Offline
Registered Visitor

Joined: Jan 2010
Posts: 3,148
UK
babygirl - might be important to get checked out - urodynamic studies, or at a minimum, just get someone to check (portable ultrasound) if you are suffering from urinary retention - i.e. not fully emptying your bladder. Important to deal with that early or you can end up with loads of infection problems as well as the possibility of it getting worse and ending up with overflow incontinence.


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
#243077 - 10/30/12 06:25 PM Re: anyone with bowel and bladder control problems? [Re: cemc]  
Joined: May 2012
Posts: 152
babygirl536 Offline
Registered Visitor
babygirl536  Offline
Registered Visitor

Joined: May 2012
Posts: 152
san diego, CA
What's overflow? Maybe I should look it up. If its what it sounds like arty face value I think I'm all ready there. Geez lol


Female, 29 - loving wife & mommy to one <3
Finally diagnosed in Oct 2011
HLAB27+
Remicade - Oct 2012
Fibromyalgia - June 2013
Tendonitis - February 2014
Humira: Failed / NSAIDS: Failed / Steroid Epidurals: Failed, caused more pain / Physical Therapy, Massage Therapy, and Chiropractics: Failed / gabapentin: Failed
#243085 - 10/30/12 10:06 PM Re: anyone with bowel and bladder control problems? [Re: cemc]  
Joined: Jan 2010
Posts: 3,148
cemc Offline
Registered Visitor
cemc  Offline
Registered Visitor

Joined: Jan 2010
Posts: 3,148
UK
I've PM'd you babygirl - my reply was getting to be a bit too much information for the main message board!


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
#243088 - 10/30/12 11:55 PM Re: anyone with bowel and bladder control problems? [Re: cemc]  
Joined: May 2012
Posts: 152
babygirl536 Offline
Registered Visitor
babygirl536  Offline
Registered Visitor

Joined: May 2012
Posts: 152
san diego, CA
Thanks


Female, 29 - loving wife & mommy to one <3
Finally diagnosed in Oct 2011
HLAB27+
Remicade - Oct 2012
Fibromyalgia - June 2013
Tendonitis - February 2014
Humira: Failed / NSAIDS: Failed / Steroid Epidurals: Failed, caused more pain / Physical Therapy, Massage Therapy, and Chiropractics: Failed / gabapentin: Failed

Moderated by  ElinAslanyan 

Powered by UBB.threads™ PHP Forum Software 7.6.0