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How does your blood work look?

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Ulcerative Colitis
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Posted 10/15/2008 2:20 PM (GMT 0)
Every time I get blood work, I always get a call from the nurse to see how I'm feeling because my labs are always horrible!!  Even when I'm feeling great (like right now) I'm told that my colon is severely inflamed.  My sed. rate right now is 120 which I'm told is the worst it can get.  I'm going to the bathroom 2-3 times a day and still bleeding but I feel wonderful.  My energy level feels normal, I don't feel flu like, nothing!

My GI wants me to consider Remicade or Humira or surgery.  Both drugs scare me to death as does surgery and I tried to explain to the nurse that it's hard to make a decision for such a radical form of treatment when I don't feel sick.  She argued with me and said that it's a pre-cursor and could mean that next week I'll be really sick..lol.  OK, then why do my labs come back horrible every time and I never end up getting that sick?  It's so frustrating to be told that I should be on my death bed when I feel wonderful.

Anyone else have horrible labs when they feel fine?

Posted 10/15/2008 3:59 PM (GMT 0)
Hi That is a high sed rate but there is hope. Mine was over 115 and I was in the hospital for for 19 days I was going at least once an hour so it sounds like your 3 times a day is not bad. I was was told surgery was my option but I had a turn around. I am currently taking 40 mg of prednisone and I have had 2 remicade treatments. Last week my SED rate was 60! my doc was shocked and happy. I have hdd no bleeding for two months since I left the hospital and have started eating normal foods no spicy things but eggs, chicken, bread, yogurt. Remicade is a big choice but some people get results, research it. Good luck I hope your next lab shows a decrease.
Posted 10/15/2008 5:03 PM (GMT 0)
None of my docs have done incessant inflammatory marker testing. They treat my symptoms and physical findings, not my labs. Remember your sed rate says absolutely nothing about UC. It merely signifies that you have inflammation in your body. If you're flaring at all, that contributes to it. If you cut your finger and your body is fighting off a tiny infection, that contributes. If you were exposed to a cold yesterday and your immune system is conquering that virus it contributes.

The last time I fired a doctor it was for treating my lab results instead of me.
Posted 10/15/2008 5:23 PM (GMT 0)
Very interesting Judy. Thanks for the insight! It made me feel better!!

The nurse has called me back 3 times and keeps arguing with me and saying that since my labs are so bad it means I'm about to get really sick. When I remind her that my labs are always bad she keeps saying "not this bad" UGH! I'm ready to scream. I hate fighting with her but I'm also not going to start a drug like Humira when I feel fine. I'm frustrated because I don't know if I'm in denial. Obviously if I felt healthy and was told I had cancer, I would treat the cancer so why am I refusing to treat my so called horrible colon because of my labs????????
Posted 10/15/2008 5:30 PM (GMT 0)
I would get a second opinion and bring copies of your medical records. I would also look into it a bit yourself and talk to your primary about any secondary reasons to show high inflammation, it could be something else that is causing it.

I dont think I have ever had a sed rate test? I go for my quarterly Aza bloodwork tomorrow, I will ask what's on there.
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