New member - ? on joint pain

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2boyzmom
Regular Member


Date Joined Jun 2008
Total Posts : 43
   Posted 6/13/2008 4:58 PM (GMT -6)   
First I want to say I have learned so much from reading your posts. Thanks!!!
 
 I was diagnosed March 08 with colitis - from your posts I now know I must have the UC type - doctor never said. All he said was "ulcers in your colon means you have colitis".  He feels there is evidence of Crohn's however test results do no support that.  He has taken me off Entocort and I am currently not taking anything daily only Bentyll when needed just to see if the Entocort has helped.  I have not noticed a difference still feel crappy on or off Entocort. 
 
My question is besides the fatigue and crampy feeling all the time, my joints ache primarily in my hands, ankles, and knees.  He has had me tested for everything including Lumpus.  It all comes back negative.  I just saw a rheumatologist - those test came back negative too. Is this a symptom of UC??
 
Sorry so long - just so confused....Thanks in advance for any suggestions or hints.

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/13/2008 5:07 PM (GMT -6)   

2boyzmom

Welcome to HealingWell and the UC forum.  I am Kitt and I want to say hello and I am sure you will be glad you joined this great group of people who know where your coming from and what your going through.

A very wise member will be along shortly and I am sure they will have some wisdom to share so again welcome.

Sincerely
Kitt


 

Kitt, Moderator: Anxiety, Panic & Depression 
*~*
http://www.healingwell.com/donate *~*
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/13/2008 5:58 PM (GMT -6)   
2boyzmom, whether you have Ulcerative Colitis or Crohn's disease, you should be on a maintenance medication. It sounds as if your doctor wasn't very informative. You have a right and a need to know your diagnosis, what parts of your colon are affected, and what the treatment plan is. Is your doctor a Gastroenterologist? If not, you may want to find a good one. If he is, sounds like you still may want to find a good one.
 
I invite you to check out the links on this page for more information about UC. You can also check the Crohns Colitis Foundation website for information on both types of inflammatory bowel disease. Typical symptoms of UC include loose stool or diarrhea (a smaller number of us can have constipation), passing of blood and/or mucus with the stools, increased frequency (anywhere from four to 30 stools a day), and abdominal or low back pain. There are also what are called "extra-intestinal" symptoms which can occur, including eye problems and arthritis.
 
If you've recently come off the Entocort, that could also explain the joint pain, as tapering off steroid medications often causes joint pains. Normally, the first treatment option is one of the 5-ASA drugs (Asacol, Colazal, Pentasa), perhaps accompanied by a short course of steroids to attain a remission. Steroids are not for long-term use; the 5-ASA's are maintenance drugs that we usually take all the time, whether flaring or not.
 
I'm going to say that IMO, a doctor who says "You have ulcers so you have colitis, here, take these steroids." is not what you deserve. You deserve to have a doctor who will inform you fully and listen to your concerns. Most of us have had more than one GI specialist, because it's so important to have that trust.
 
Welcome to HealingWell, and I hope you're feeling better very soon.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/13/2008 7:34 PM (GMT -6)   
Hi and welcome. I am sorry you are having those symptoms. I agree with Judy. Maybe you could go for a 2nd opinion or to a GI specialist. Also, I have heard that sometimes when you have UC, you are susceptable to other illnesses such as arthritis. Anyhow, I hope you can get better help from a doctor. Good luck and take care! Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: symptoms have subsided for the most part
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (sometimes) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


2boyzmom
Regular Member


Date Joined Jun 2008
Total Posts : 43
   Posted 6/13/2008 9:24 PM (GMT -6)   

Thank you for the info.

I was having the achey joint pain even on the Entocort...that was another reason my GI took me off of that med.  Is it normal for this type of discomfort?

I am thinking you are right - I do need to get a second opinion.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/13/2008 9:40 PM (GMT -6)   
Yes, steroids can cause joint pain and muscle cramps. Some people get them while taking the medication, others as they taper off.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 6/13/2008 11:09 PM (GMT -6)   
hello and welcome 2boyzmom,
i had very bad pain in my shoulder before i started taking any meds at all. never had any other joint problems and it was a sudden onset, a few months after the other UC symptoms started.
asacol seems to help the pain quite a bit, though i still can't sleep on one side for very long so i'm sure there is some degree of inflammation there.
hope you can get a second opinion soon and maybe on some meds that will help you feel better all over!
29, happily married, stay at home mom to 2.5 year old son. due to have another boy 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Prayer! asacol, probio, ground psyllium husk, prenatal, folic acid, cal-mag

may you live all the days of your life.

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