question...please advise

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wantingremission
New Member


Date Joined May 2008
Total Posts : 15
   Posted 6/23/2008 2:00 PM (GMT -6)   
hello everyone...i had a question and anyone who can respond, it will certainly be appreciated.
 
my mom has ulcerative colitis and she just had her 3rd infusion of remicade a few weeks ago. She has been in a longggg flare, dating back to jan-feb. She just had her 3rd infusion and she is having slightly less rectal pain then before, but its clearly still there. The main issue is the # of bm's she has a day 10-12 roughly, and this causes the rectal pain. (BEFORE STARTING REMICADE, HER LAST COLONOSCOPY INDICATED ULCERS EVERYWHERE)- THere is no bleeding in the bm's, small very small soft stools.
 
She is also feeling restless every couple days, her shoulders hurt, feet hurt. and this may surely be from all of the bm's and lack of energy. Her weight has been consistently falling, not to much, but slowly & surely.
 
Currently she is on 12 asacol a day, 10 mg of prednisone and tapering it down (finally a few more weeks left,hopefully she can get completely off of it!!), also on rowasa enemas, and donnatal (this has helped with her stomach cramping that she was getting after the remicade).
 
I don't know what to really do considering her symptoms are not improving much. I'm hoping that remicade will certainly help her, shortly!! She will go in for her 4th infusion in the second week of august.
 
Has anyone been in a similar situation or have any advice for my mom? Anything will be appreciated.
 
Thank you so much.

bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/23/2008 2:05 PM (GMT -6)   
She's lucky to have a daughter like you.  Keep up the good work.  I'm fortunate enough not to have had it that bad, but someone will answer you soon.  Welcome to this website, you will find it very helpful.  Take Care, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1,         Canasax X 2 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!"
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 6/23/2008 2:25 PM (GMT -6)   
Remicade can take awhile to work. Seeing any improvement after the 3rd is a good sign.

My flare started in 2006 and remicade is the only thing to work. When i started i was at about 10bms a day with pain but no blood. It took till after the 3rd to start seeing a big improvement. The fourth was even better. Hang in there and good luck!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/23/2008 3:13 PM (GMT -6)   
The restlessness and joint/muscle pain are most likely due to the prednisone taper. Once she's been completely off for a time, it should get better. Tylenol may help take the edge off it, I took the arthritis forumla every 8 hours. Just have her take it routinely for a bit, to see if it helps.

I hope the Remicade will kick in and begin working; if it's going to work you should see results by the sixth infusion if not before. Remember that even though active inflammation may be improving, the colon still has to heal, so she may see continued improvement over time.
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.


wantingremission
New Member


Date Joined May 2008
Total Posts : 15
   Posted 6/23/2008 5:40 PM (GMT -6)   
Thank you all for responding in such a timely manner. Judy what is the arthritis formula that you mentioned in your post? just today the doctor prescribed some zantax for anxiety or restlessness relief and also imodium for the # of bm's and/or diaharea* symptoms at times. Also, any suggestions as far as what to eat and what may help flares and make the symptoms worse?
 
thanks for your advice!

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/23/2008 7:04 PM (GMT -6)   
It's Acetamenophen; if you're not in the US you may know it as Paracetamol. Tylenol is a brand name here.

A bland, low-residue diet may be the safest right now.
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.

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