Colostomy bags?! What the!

Went back in to see my hemo two weeks ago. He said I ahve grown another two spleens! This time the size of gulf balls in three months. Hemo wants surgery, the surgeon (same one who cut me open last year) doesn't want to. he said after looking at my scans it is very risky. One of the spleens is attached to my pancreas and might also be attached to my kidney. The surgeon said he would have to go through my side and possibly through my ribs and colon with a good chance of needing a colostomy bag! I am going to Tx (about a three hour out-of-town drive) Thursday for a special test where I get nuclear stuff put in me and to see if just the spleens light up, or the area. If the area lights up the surgeon will refuse to do the surgery because he said I wouldn't make it?! This is crazy and freaking me out! Another thing is that if the surgeon does do my surgery, he and the hemo want it done before March (a week away). This is when the Rituxan will have worn off and even with good platelet counts they do not want to risk teh surgery. Last time I had a surgery with perfect platelets and no rituxan in me minutes after the surgery I started to bleed inside and lost over 2 liters of blood. The surgery freaked out my body and caused my platlets to drop. I had to have 8 units of blood and an emergency surgery to stop the bleeding. kinda scared. opinions people? I have been on four sets of Rituxan in a row. it ends every 6 months like clock work for me. Doctors want this surgery because they do not want me living on Rituxan fo the rest of my life. If I do not take it, my platelets go to 0.

Since there is no guarantee that having those spleens removed will cure ITP, why consider risking your life to have them out?

What other treatments have you tried? Have you tried the TPO's? You may not just be stuck with Rituxan for the rest of your life.

You asked for opinions. That's mine.

Just my opinion but if I were you I wouldn't want that surgery. Have you tried all the traditional treatments, steroids etc. and like sandi said the TPOs? But sounds like surgery is risky for you.

Let's see what the tests show about the new spleens. Couldn't you do Rituxan one more time to buy you some more time to decide and maybe get more opinions?

I think if you have abnormalities like these spleens, it's a whole different ballpark and the decision rules we use about simple ITP may not all apply.
Erica

Doctors don't want the TPO's because they don't have enough long term studies done on them. The steroids have failed. I have had three surgeries already for my spleens to be taken out so this would be much higher risk with all the scar tissue. Because I am only 31 my Hemo and his crew really do not want to give me the TPOs and end up getting ancer down the road or somethnig crazy. SO I have no clue.

Well, like Erica said your case seems to be in a different ballpark. It seems like your docs are trying to figure it out and maybe the tests will be able to help with the decision.