SIGH....another normal test....

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RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 4/28/2008 7:37 AM (GMT -7)   
Hi everyone!  Well, hubby had a rhuemy appointment, she didn't feel that he was presenting with the "typical" Crohn's Arthritis symptoms.  She did order a hip x-ray since in his nine million tests/scans/etc there wasn't a clear picture of the hip.
 
NOTE:  hubby suffers EXTREME pain at a point between his legs; like if you look at a picture of the pelvis, it would be the part of the pelvic bone that is right between the legs, left side...
 
X-ray results are "normal".  And so are every other blinkin' tests he's had of the area:  nuclear whole body bone scan; MRI of lumbar spine; x-ray of sacrum and coccyx; ultrasound of pelvis; CT of pelvis and abdomen; MRI of pelvis.....
 
So, there is "nothing" to indicate why he would be in such pain; yet, he can't sit, stand, walk, drive for any length of time without being in pain.  He takes 6 oxycodones (percocet) per day--still in pain.  This has been going on for over a year, along with other stuff that led us to a GI (we've only had a dx of CD since November 2007).
 
He takes:  percocet, 6 per day; pentasa, 9 per day; remicade, still on induction, 3rd infusion postponed from 4/29 till 5/8; mulitvitamin.
 
Can anybody give *any* suggestions for what the h*** this pelvic pain might be?  He is at the end of his rope; he is desperate for pain relief...
 
Thanks for reading.
 
--newcrohnswife
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 4/28/2008 8:01 AM (GMT -7)   
Well, Im no doctor , but I dont think soft tissue shows up on an x ray. Neither does connective tissue. AS attacks the tissue where the muscle attaches to the bone. Some times it shows up in a lower lumbar X ray, but that is only after it has done some real damage. I know this because I fit that profile. Your husband may have some nerve pinch also. I also recall something,( I am sure someone will come along and help me out here)the spine itself has a joint that can be a real pain, but I forget what they call it. Main thing is dont give up, keep pushing the doctor until they find it.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 4/28/2008 8:17 AM (GMT -7)   
has he went to PT my husband was having problems and found out after going to PT one of his leg was longer than the other because of the way he was walking and sitting. He did some exercises and heat & massage and he could walk and sit ok. It took a few and his legs are the same length.



Ne Ne

RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 4/28/2008 9:40 AM (GMT -7)   
Thanks for the replies.
 
Sniper:  so what has helped you?  do you have AS? any suggestions for further test requests?  any other suggestions?
 
Ne Ne:  oddly enough, the rheummy wanted him to try PT; had an appointment today, but he has been in so much pain over the weekend, that he cancelled.
 
When this all began, he kept being told he had prostatitis (he was on antibiotics forever) by PCP and several urologists.  I have done some Googling on "pelvic floor pain" and have some leads that I want to follow up on....
 
Again, thanks for replies.
 
 
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 4/28/2008 11:09 AM (GMT -7)   
Has he been checked for a hernia?
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 4/28/2008 11:24 AM (GMT -7)   

My dad had the same problem with his hip hurting really badly, after he got it he had to use a crutch or cane to walk because it was so bad.  They even went as far as to do some sort of test where they put a camera scope in his leg and poked around all over in his hip, but despite that and every other diagnostic test they couldn't figure out what was wrong with his hip.  After 2 years it just finally started to hurt a little less and then about 3 months later he could walk normally.  10 years later and it has never come back to bother him again.

To this day we have no idea what was wrong with his hip, but we are very glad it went away.  I hope your husband's hip gets better soon and that it's just a temporary problem, not more crohn's.


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 4/28/2008 12:00 PM (GMT -7)   
My husband was in so much pain but it helped a lot to go to PT. Be sides its worth the try...... I've tried everything the doctors have said just because..My husband also has had back problems and wears a back brace.... But before PT he was using a cane to walk with and wanted to get my mothers walker for support..




Ne Ne

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 4/28/2008 10:05 PM (GMT -7)   
I am on Remicade now and it has made a world of difference. I am at a loss for what test you could try next. The spinal X ray on me showed damage . Are you sure the pain is in the bone or joints. There are problems that effect the bladder, prostate or testis that can cause pain in this area also.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 4/29/2008 7:24 AM (GMT -7)   

Sniper:  how long do we wait for the remicade to do something, anything?  I know we are most likely just being impatient, but this man spends about 20 hours a day **in bed**!

Is there anything I can ask the doc to put him on in conjunction with the induction phase of remicade?  And please don't say prednisone...although if he has to he has to....

From what I remember, his disease is at the ilium (ulcers) and on the left side (??descending colon); lately he has been having alot of discomfort on the left side, about where the stomache is, and downward.  Yesterday, he was in alot of discomfort really down low, like at the very end of the colon across the pubic area. 

SIGH.  I've just called his GI's office and left a message.  I just want to help him.  It breaks my heart to see him this way.

--t

 

 

 

 


Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 4/30/2008 10:58 AM (GMT -7)   
Has he been checked for a hernia??? I know this is the second time I asked, but I think maybe you missed it... I had very similar pains when I had an inguinal hernia. It is at least worth checking out.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 4/30/2008 1:25 PM (GMT -7)   
CrohnsDaddy--what test is for hernia?  He's got such a pile of test and test results, it makes my head spin!
 
GI has just put him on entocort, 9mg a day.  Next week is 3rd remicade.  Saw the primary doc today, and he has added Lyrica to the mix....
 
We have a urologist appointment on the 14th and are going to talk about chronic prostatitis (which is what everyone was calling it in the beginning, over a year ago now) which I do think is part of the mix.
 
Have been trying to get with someone for pain management, but I am really having a tough time without a difinitive diagnosis for the the pelvic pain.  I am hoping that the urologist will diagnose chronic abacterial prostatitis/chronic pelvic pain syndrome.
 
Thanks for all the thots and keep em coming.
 
--newcrohnswife
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!

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