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Posted: Mon Apr 16, 2012 12:22 pm
Hi everyone,
I'm hoping some of you will have information that can help me with my latest problem. I suffer from Crohn's disease and had my colon, rectum and anus removed 5 months ago. I soon began Remicade and just found out that my blood work taken on Friday revealed my liver is being affected. I have always had normal liver functioning (# should be under 50) but now it's sky high at 249. I am having an ultrasound of my abdomen tomorrow to rule out a blocked bile-duct but it certainly seems like the liver problem is being caused by the Remicade. The question is if I can't take Remicade what else is there for me? What do other people with ileostomies take to protect their small intestines. i have 98% of that organ left and no one lives without it. Any help/insight would be greatly appreciated. Thanks so much, Lillibelle


Posted: Mon Apr 16, 2012 5:18 pm
Hi Lillibelle

      Well good luck tomorrow,It does sound like your in good hands and you will have some answers soon.I have Crohns and I take Remicade, for the last 15 months and when I was first on Remicade I had made a few trips to Emergency for kidney stones and  a couple other things, and every thing is going OK now,so I think.... lol.My Doctors keep a close eye on me as well, and the blood work does show alot of information. since being on Remicade my doctor has changed mostly my vitamins and a few minor adjustments to my meds. Remember your body has went through some big changes in the last 5 months,My last surgery was Jan.2008 and there are times I look back and say that I am still healing.

nogutz


Posted: Tue Apr 17, 2012 8:28 pm
So, Lilibelle, did you learn anything from the ultrasound, or do we have to wait for you to get the report from your doctor?

I am always amazed at the number of times I've jumped the gun and made a connection between a symptom and a new treatment or change in treatment.  They usually were unrelated, but I think it does help to record those symptoms so you can share with your doctor like you did.  

I once started getting horrible shooting pains in the temple above my ear, and had never had anything like that before.  It would have been unusual to have my cancer come back again  in the brain since the norm is lung or liver.  But my oncologist scheduled me for a PET scan the next day.  No waiting around on that one. Nothing was found, and I've had no repeat episodes of those pains.

I'm sorry, I can't help with any Remicade questions.  I too lost my anus, rectum, and part of my colon, so I've got a colostomy instead of an ileostomy and don't need to take the extra medicaine for that.  Chemo soup is enough!!

Keep us posted.


Posted: Wed Apr 18, 2012 8:29 pm
Hi lillibelle, Skidder here! A few years ago my GI doc started me on Remicade. I was on Remicade for a year and a half. My symptoms were starting to reappear and overall health was poor so I was placed on Humira. I have been on this for almost the same length of time as the Remicade. I am doing good. I have some pain, bad days etc but dealing! I do know that taking these meds I need to be monitored frequently with lab work etc. I am quite diligent about that. I have 290 cm or about 11 feet of small intestines left, everything else has been removed all since 1971! Talk about the bag lady.....
Hope this helped you....there are many medications out there to help you with your disease. Don't give up. You will come upon one that deals with your situation and things will start looking even better. Take care...
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