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sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/2/2010 12:11 PM (GMT -7)   
In leiu of all my crazy dog stories, last night I began to have excrutiating pain in my legs.  I got fed up and went to the ER in tears.  I can't take it anymore, someone has to figure out what this is.   Then they checked my BP which was 190/120.  Probably due to the level of pain I was in.  Anyway I got the third degree like i was some kinda drug addict.   Why do you have this pain?  Why is it this bad?  Your 29 whats wrong with you?  This is not possible you appear to be fine.  Crohns is your intestines, why do your legs hurt.  I don't know... why the h*ll do you think i'm here!  Otherwise, why would I let you treat me like a ginea pig if i wasn't desperate?  I was furious and embarrassed.  By that point, I told them I can sit and cry at home in my own bed thank you very much, without getting the third degree.   I am a professional and do not deserve this treatment.  Then they wouldn't let me leave bc they said it was dangerous because of my BP.  I could have a heart attack.  (By this point I'm sure that THEY were making my BP so high mad   < thats probably what I looked like.   So I had to take several BP meds until 6 hours later, one intravenous BP med finally worked and it dropped instantly to 148/85.  They were sympathetic towards the end.  But not after making me feel like a 6 yr old.  I was told to follow up with my primary for BP and can't take my Cimzia till I get clearance.  Life?  Sometimes I wonder what the point of all of this pain and embarrassment is for.  Why do we have to suffer time and time again.  Well, I will never do that again.  I don't get mad easy.  But I don't think I have ever been angrier.  And I will be filing a complaint with the hospital. 
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 9/2/2010 12:16 PM (GMT -7)   
How crazy is that crap.  Did you even ask for pain meds?  I also find it amazing how little other docs know about our condition and meds.

aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 9/2/2010 1:25 PM (GMT -7)   
I'm so sorry you had to go through this! Yuck! I would definitely file a complaint with the hospital! Hope you are feeling better now!
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 developed anastomostic leak and EC fistula. 2nd Resection, April 1, 2010-to fix leak and fistula-feeling fabulous now.  Taking 100mg Imuran for maintenance. 

sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/2/2010 2:23 PM (GMT -7)   
I feel better now, but I know my BP is still high and the leg pain is not as bad today. I want answers. This has been going on for a year and half now and I've been to two hospitals. I think I'm going to go to the Mayo clinic. This city is not known for its amazing drs I'll tell you that much.
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 

pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 9/2/2010 2:28 PM (GMT -7)   
I'd talk to someone in charge of their ER unit and tell them your story. What happened to you is a bunch of crap, I wouldn't have that happen to me without them enduring a 15 minute tirade.
Diagnosed with CD July 2007
Currently on Remicade, acidophilus, multivitamin.
Resection December 2009

Amor fati - Nietzsche

sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/2/2010 2:38 PM (GMT -7)   
Thank you for your sympathy. They made me feel like a nut job. Its good to hear back and know I'm not crazy.
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/2/2010 4:03 PM (GMT -7)   
I think I know what hospital you went to and yes file a complaint. They sent me back home, a 2 1/2 hour drive with pancreatitis so bad I could not stand up and then said I could have stayed if I had asked . Grrrrrrrrrrrr. Lucky they were out of range when they said that...
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.

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/2/2010 4:23 PM (GMT -7)   
 
 
    
            What time of the night was this? I bet these were first year resident doctors. Whatever, make sure they get reprimanded by the Hospital. No one should go through that. I've gotten a little of that in the past, but that was because due to Kidneystones & their complications, I was a fairly frequent visitor to that ER.
      By all means, COMPLAIN & do it **LOUDLY**!
 
     Sincerely,
    Matthew
 

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/2/2010 4:28 PM (GMT -7)   
Sick of it all have you been tested for lupus? Or drug induced lupus?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders: All comments have the caveat contact your local health care provider.
I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 9/2/2010 4:35 PM (GMT -7)   
My ER is the same way... I go in for abdominal pain and they test me for STD's, tubal pregnancy, and host of other things that I don't have. You would think the 10 inch scar down the middle of my stomach would give them a clue ......
 
I hope you find out what is causing your leg pain very soon.
 
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996

Bowel Resection 2006, Now on Asacol, Imuran, Folic acid, B-12 injections and Enalapril.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/2/2010 4:58 PM (GMT -7)   
I'm so sorry you were treated so badly :-(.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/2/2010 5:09 PM (GMT -7)   
I've been tested for everything- lupus, DI lupus, RA, Arthritis, you name it. This all started with prednisone at the time of my crohns diagnosis. I think it may have damaged nerves or something. If not, its something rare. I have had two EMGs, xrays. But no MRI or CT scan or serum test. I asked them at the hospital why they would not do an MRI or CT scan, after 1 1/2 yrs of unexplained excrutiating pain. They said I needed to go to a teaching hospital. After reviewing all of my drs appts records, they said apparently my drs at THEIR hospital were not finding the cause. I have never heard the ER say go to another hospital to get necessary diagnosis. I'm just fed up. Ready to get on a plane and go to a real hospital. It looks like the leg pain is returning every night at 6 pm. What the heck could this be? I was better earlier.
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 

Glori
Regular Member


Date Joined Jul 2010
Total Posts : 42
   Posted 9/2/2010 5:51 PM (GMT -7)   
What kind of leg pain is it?  Is it in the muscles, or in the joints, or just everywhere?  I am so sorry that you have suffered for so long.  I have to wonder if it is due to low potassium ..

sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/2/2010 6:35 PM (GMT -7)   
Muscles, joints and nerve pain. Potassium was slightly below the normal level. 6 out of 15 blood tests were out of the normal range. But they said my bloodwork was normal ??? and they didn't even do a Creactive protein test. They sent me home with all the results so I gotta look up the ones that were off.

Thx guys for caring. You don't know how much this site helps me keep my sanity.
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 9/2/2010 6:40 PM (GMT -7)   
I still bet they did not bother to do an ANA test, which if you have leg pain on remi, they should do at the most acute stage.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders: All comments have the caveat contact your local health care provider.
I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/2/2010 7:13 PM (GMT -7)   
I will check for sure tomorrow MMNAVY I go to the primary to figure out where to go from here. Any other advice before tomorrow?
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 

potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 9/3/2010 5:01 AM (GMT -7)   
I am so sorry you went through this. I've had similar experiences with emergencies rooms. I used to go to an emergency room in a well-respected hospital near my home. I would literally be screaming in pain, vomiting, and unable to stand up straight, due to one of many obstructions; and I often had wait hours to be taken. When I was finally taken in, it was another long wait to see a dr. who often treated me like I was a maniac who was overreating to pain. To make a bad situation worse, when he found out that I was taking an anti-depressant his immediate reaction was "How long have you had this mental illness?" The smirk on his face made me want to...well you can imagine. Here I was an almost middle-aged woman (at the time) being treated like a little child throwing a tantrum. To top it off, he initially, wouldn't prescribe any pain meds when he discovered I was having an obstruction due to CD, due to the issue of the meds slowing my bowels and possibly making matters worse. (This was many years ago) It was the first time I wished someone would just shoot me to end my suffering. Well I was finally given some pain relief. But I will never forget this horrendous ER experience.

I now go to a hospital where I get treated with respect and dignity. The first time I went to their ER I mentioned my concern about the pain meds and slowing the bowels and the ER dr said although that was a concern, they are more concerned about relieving my pain. I was so happy to find a ER that I could gotoin times of need and know that I will get relief and be treated well.

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/3/2010 5:26 AM (GMT -7)   
I read somewhere that women die from heart attacks because , first, they have A typical symptoms and second, doctors tend to not beleive they are in pain as readily as they believe a man . After listening to you guys talk about ER visits I believe its true. What the _____ is up with that ???? Why would there be doubt ? If I was in pain and a doctor gave me that sort of Bull Crap, I would grab him by his private parts and ask how much pain he was in. Of course this would only work on a certain type of doctor. But then I would think a woman doctor would have better bed side manners..
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.

Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 9/3/2010 9:42 AM (GMT -7)   
sick, do you have lower back problems? That can cause Sciatica. They would have to do an MRI.

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 9/3/2010 11:30 AM (GMT -7)   
Potsie-How is your son now??

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/3/2010 11:50 AM (GMT -7)   
I'm so very sorry you were treated this way! I know how horrible it feels when they make you feel that way! I had a doc do that to me once. I was so confused and I guess embarrassed that I didn't really speak up as much as I should have at the time it happened. I did write a letter after, though. So, go for it and give them a piece of your mind! They are there to help, not to belittle. I'm just so sorry...

I'm probably way off the mark on leg pain, but it's another idea... When I get severely anemic my legs hurt like crazy in the hamstring area. Yours sounds more acute than mine gets, but I figured it can hurt to throw out that idea.

good luck figuring it out. And hugs to you! I hope you feel better away from that ER!
1 fistula with two tracts, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia. Dx Osteoporosis 10/08 started Forteo 1/27/09

Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 9/3/2010 4:08 PM (GMT -7)   
vixen said...
Potsie-How is your son now??


He's doing really good right now. He just last week, took a round of steroids, and his Remicade treatment every 4 weeks. That's for asking!! smilewinkgrin

sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/4/2010 11:45 PM (GMT -7)   
I had my follow up appt with the general dr. Dr was very sympathetic and annoyed with the treatment I've been receiving overall. After reviewing my appt notes from the rheumatologists he said that that dr had written me off as unexplained pain, just treat the chronic pain. He said he knew this dr was well respected and knowledgable. So he was extemely surprised to hear that and was disappointed in him not digging any deeper. He is also referring me to a pain clinic near by in the interim. He said this guy is the best in the state and should be able to figure it out. I also brought my cimzia with me and they found a nurse in the hospital to inject them in my abdomen. I have to say today my legs have noticably improved. I'm walking normally again. Even my husband commented on it. My BP is still high, so he also prescribed the BP med. that the hospital gave me, but pill form. Dr was also surprised they sent me home with no BP medicine. So I went and also got a monitor so if it does go up that high (even with the BP meds) I have to go back to the ER. Also today for the first time I didn't have a low grade fever, it was 97.8. Dramatic improvement there. Its usually 99.9. I was also referred to a diagnostic center in Houston to follow up with, if I don't get any better. He said they are like the show "House". If all else fails, I'll go there. Looks like I at least have a plan, finally! So again I'm optimistic. We'll see how it goes from here. Thx for all you guys support. Don't know how I'd cope without it now!
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/5/2010 5:57 AM (GMT -7)   
Good to hear someone is at least trying to help . Glad your feel better too. hpe they get to the bottom of this and you dont have pain in the legs anymore. Of course you can always count on me to be a pain in the butt...Hugs
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.

sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 9/5/2010 11:27 AM (GMT -7)   
Sniper:  What's interesting is that the dr is sending me to the competition due to his hospital's incompentancy.  He said this was "off the record" giving me to someone else.   He was truly concerned and believed there are answers, but their drs simply cannot find them. 
 
What's also interesting is the fact that the leg pain almost completely went away after the cimzia.  Making me think this is directly related to crohns or another autoimmune condition.  When I took the cimzia, i had no clue it would decrease the pain this much.  I just knew I needed my meds for crohns.  By this point, I had been completely off medicaiton for 3 weeks, not good. 
 
Yay! Maybe I can get my life back.
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
29 yr old female w/ crohn's colitis and SEVERE leg pain
 
 
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