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Izzys_mom
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/8/2008 8:05 PM (GMT -7)   
Strange question...but....I was diagnosed w/Crohn's in 2003. Controlled it with meds & Remicade. Had my first child in January 2007. Now since July have been having horrible pains in my abdominal area. It bloats up like I'm 5 months prego. Which I'm not. It's not gas since I'm not belching or well any of the special things that come w/the Crohn's. LOL Comes in waves. Happens for about 1-2 minutes, my heart starts racing and i break out into a sweat after a few minutes it goes away. Then another and another and so forth for about 10-15 minutes. Brings me to my knees now. Its unbearable at times. Other times, I pick up my child to carry her somewhere. I can't walk more than 10 feet w/o having to sit down. My feet become heavy, my knees are weak. My hips are numb and on fire. I sit down and a few minutes later am ready to walk again. That's not constant but does happen maybe once to twice a day. I'm dizzy all the time to the point where it affects my driving sometimes. I get scared to get behind the wheel. I was recently thru the ER which a round of blood tests and CT scans for them to tell me there is nothing wrong. I'm telling them I'm in pain, I'm in tears but nothing is wrong? I've had two rounds of anti-biotic's and prednisone and still the same. On and off the meds. What next? My primary doc suggested doing a bone scan due to the prednisone usage, and another round of lab work to rule out arthritis, lupus...etc. Then what? How do I manage the pain, You can't tell a 1 year old to hold on while mommy's pain passes....what happens from here? Who or what should I ask my doctors to do? I'm at a loss at this point. I've been telling them for months I'm in pain and they keep saying we'll deal w/that at the next appointment. They're concerned w/my weight. Which is another subject. I'm 5'5" and 103 lbs. B/c I can't eat b/c of the abdominal pain...but they don't listen...any suggestions???
 
 
 
p.s. sorry for the rant...but helps to get off ur chest sometimes...but please suggestions are wanted for the doc's

D&G's Mommy
Regular Member


Date Joined Jan 2005
Total Posts : 185
   Posted 1/9/2008 1:54 AM (GMT -7)   
I'm sorry you're having such an awful time and don't seem to be getting the help you need. I was on Remicade too and then it stopped working for me and I switched to Humira and feel much better again. Maybe your current methods of control aren't working and you need to switch things up. There has to be some reason for the pain. My kids are now five and six and when I have my bad days it's just crap. They don't get why I have to lie down. I don't know what to tell you about the pain. For me I lie down when it's bad. I hope you get things figured out soon.
Cathy
Mommy to a 5 and 6-year-old
Currently on Humira, questran from time to time.
Using acupuncture.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/9/2008 7:35 AM (GMT -7)   
I agree with the above, maybe its time to try Humira. Also maybe a referral to a Rheumatologist and/or a Pain Management doctor. I think the Rheumy could help to get your joint pain treated. I personally believe that for us Crohns patients a Rheumy should also be part of our arsenal against this disease.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/9/2008 9:43 AM (GMT -7)   
My symptoms sound very similar to yours and it sounds like you have some serious inflammation going on, that might be the cause of the sporadic cramping. That's just my opinion, I'm not a doc. Since my GI put me on Humira plus 6mg Entocort daily I feel 110% better, the cramping due to inflammation was so bad I couldn't stand up straight, now it's all but gone. When I do have a bout I take 5mg hydrocodone tablet and it goes away, it's amazing. I see a pain med specialist for my pain meds, I highly suggest you do that too. You need something for your pain, you have a toddler to keep up with!
Good luck to you :)
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)


Izzys_mom
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/11/2008 6:09 PM (GMT -7)   
Well here's an update -- went to Gastro today. He put me on 9mg of Entocort but left me on the Lialda which is 2 per day and my primary doc has me on 75 Mg of Effexor. I haven't been on the Entocort before. So far 1st dose today and the abdominal pains are less frequent. Although I just got my Remicade Wednesday. Go back for f/u w/Gastro in two weeks. I've suggested to doc to try the Humaira but he doesn't want to until the Remicade stops working. I guess it's just a wait and see game right now since they added the Entocort to my daily doses. Updates in two weeks after the lab tests...


Jodie
Ocala FL
Dx w/Crohn's Sept 2003
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