really bad body aches

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RITAS
Regular Member


Date Joined Feb 2006
Total Posts : 140
   Posted 3/15/2008 11:15 AM (GMT -6)   
For the past two week my body has felt a little off. In past posts I've explained being on TPN for a few months and now I've been off for almost 4 months and no problems.  I feel so much pain in my body.  I can't really say if it's my bones or muscle.  It's just pain.  Walking, sitting, standing, SLEEPING...pain pain pain.  I take tylenol to calm things down and it helps a little but I feel like somethings not right.  Could it be stress, depression (i've been depressed) or malnutrition?? I'm scared to go to the doctor because what if he tells  me I have to go back on the tpn and I have to get a picc line all over again??? has anyone felt this way that can put my mind at ease??
Rita
Crohn's Free Since April '06
Total colectomy/ileostomy April '06
Reversal July '06
Bowl resection/ileostomy July '07
Currently trying to learn about the "new me"


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 3/15/2008 3:28 PM (GMT -6)   
Rita
Are you on any meds? I know that when I was on Levaquin for pneumonia, my arms, hands, legs and back ached horribly. How long have you been feeling this way? Do you think it could be the flu that's going around? Sometimes dehydration can cause those symptoms too, are you drinking enough? I hope you can get a handle on this soon, or I would call your doc and let them know how you feel.
Theresa

Originally diagnosed with CD in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying "Undetermined Colitis"
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


RITAS
Regular Member


Date Joined Feb 2006
Total Posts : 140
   Posted 3/15/2008 4:03 PM (GMT -6)   
Hi Theresa,

I've been feeling like this for about 2 weeks now. No, I'm not on any meds and haven't been for a long time. I first thought it was the flu but 2 weeks? I also drink 8-10 bottles of water a day not including other types of drinks so I'm hoping it's not a dehydration problem..haha. I'm going to start eating steak and potatoes every night like I used to. I stopped that for a while. Maybe it's the protein?? If I don't feel better in the next week I'll call the doctor but like I said I'm so scared to go back on tpn!!!!
Rita
Crohn's Free Since April '06
Total colectomy/ileostomy April '06
Reversal July '06
Bowl resection/ileostomy July '07
Currently trying to learn about the "new me"


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 3/15/2008 8:35 PM (GMT -6)   
Rita,

I remember not long ago you told me that you had a pick line for a few months while taking trn. Did you do that at home? Why did you have to have trn?

I remember you said your ilostomy had a high ouyput and you did drink alot of water. How often do you empty your bag?

It may be dehydration as I get very tired and hurt alot everywhere when I get dehydration. I don't wet as much no mater how much I drink. It seems like I empty the bag every time I turn around. I have been getting IVs at the hospital two times a week.

I just found out from my DR. that I have a yeast infection in my small intestine that might be causeing some of my problems. One of the side effects of it is diarrhea. I have to take it for two weeks before Iwill know if it will help me.

I know how you feel. You should go see if it could be dehydration. Please go see your Doctor and take care of this so you will feel better.

Do you take loperamine or amything to slow down your output? I don't leave the house at all unless I go to the hospital or to see the Doctor.

Hoping you are feeling better, Jan

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/16/2008 9:02 AM (GMT -6)   

Rita,

I agree with Jan -- you probably should visit your doctor.  If nothing else, let them do some labwork.  Maybe you are deficient in a vitamin or mineral.  My cousin, who doesn't have an ileo, feels this way when she is anemic.  In fact she just went to the dr for the very same reasons last week and had labwork done.  Results are not back yet for her.  But, if you don't think hydration is the issue, then I would call your dr and see if he thinks maybe some labwork would be a good idea.  (I like to have the labs done prior to my visit with the doctor so that I can talk to him in person about the results.)


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 3/16/2008 1:33 PM (GMT -6)   

Peggy

I've noticed that you have Crohn's and wanted to ask you a question. Do you ever feel dragged out tired? Our son has Crohn's and I'm not kidding when I say he can easily sleep for 16 hours. He takes Asacol and 6MP. His labs are always okay, so we're wondering if it's related to one of the meds.


Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/16/2008 1:39 PM (GMT -6)   

Terri -

I never took Asacol or 6mp --  I don't think they were around in the 70's, early 80's.  CD in itself can cause a lot of fatigue.  I think it is just the nature of the beast.  The body is fighting, fighting, fighting and just wears out...  I remember feeling so fatigued, but because I was on so much prednisone, cortenemas and hydrocortisone suppositories, I felt wired.   The brain felt one way and the body felt another.  Now, when I feel fatigued, I check my calendar and it is usually time for my B12 shot! 

Maybe one of the others here can answer your question about how they felt on Asacol/6mp.


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 163
   Posted 3/16/2008 5:34 PM (GMT -6)   
I'm in Rhode Island. There has been a strain of flu going around that seems to hang on forever. Body aches, sweats, fatigue, chest pains, and trouble breathing. I thought I was on the verge of checking out. One doctor kept giving me prescriptions for antibiotics which didn't help. Then they have me a prescription for an inhaler and told me to give it time. Four weeks later I finally came around. I've been down the road with the TPN and picc and can understand your concern. You will find the answer. Good luck.

Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 163
   Posted 3/16/2008 5:35 PM (GMT -6)   
I'm in Rhode Island. There has been a strain of flu going around that seems to hang on forever. Body aches, sweats, fatigue, chest pains, and trouble breathing. I thought I was on the verge of checking out. One doctor kept giving me prescriptions for antibiotics which didn't help. Then they have me a prescription for an inhaler and told me to give it time. Four weeks later I finally came around. I've been down the road with the TPN and picc and can understand your concern. You will find the answer. Good luck.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6552
   Posted 3/16/2008 7:19 PM (GMT -6)   
i took asacol, and 6-mp together, andi also took immuran before that, andi will tell you that, the immuran and 6-mp kicked my butt! it wasn't the asacol when i was just on that i wasn't tired But those other two, gave me horrible aches, and nausea and headaches, those were so bad, also i was sooo tired.

Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 3/17/2008 11:16 PM (GMT -6)   

Peggy/Summerstorm

Thanks for the info. He was due for his blood work, so he came to the office to have it done. His CBC was 'normal', but we did noticed that his hemglobin has dropped a bit since his last labs were done. We should have his other blood work back by morning, so maybe that will show something.

He thinks it's the 6MP that's doing it and he could be right.


Terri
 
_________________________________________________________________________________
Breast Cancer at 36. Diagnosed in 2000. Bilateral mastectomy with reconstruction.
Sub-Total colectomy in September 2007 for colonic inertia.
Son diagnosed with Crohn's at 17 (now 21). Taking Asacol and 6MP with Prednisone and Rowasa added during flareups.
Husband HLA B27 postive with ankylosing spondylitis and psoriatic arthritis.

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