Reply to "Anemia common/serious with Jpouch?"

I can only go by my experience. I’ve had my j-pouch after my colon cancer diagnosis which was directly linked to years of Ulcerative Colitis... first stage 3 and then progressed to stage 4 (Metastatic). I also was diagnosed with Anemia after all of my treatment was completed. Treatment included surgery. Total Colectomy with temporary Ileostomy then the reversal to the JP. Chemo which consisted of Folfox ... 72hours (sent home with the infusion) and disconnected by a visiting nurse. It turns out that after I was genetically tested I qualified for a clinical trial with Immunotherapy (Keytruda) at Johns Hopkins. This was my 2nd opinion doctor because my 1st doc wanted to do chemo again without DNA test results. That’s when I knew it was time to move on. I knew through my research that Hopkins was a leader with clinical trials and clinical trials save lives. So went there and remained there. I did 4 infusions total and had to stop due to severe adverse reactions and a toxicity which almost killed me. And landed  in the ICU with a temperature of 105.1, and hives from head to toe. Then MRSA set in. It was AWFUL ..... BUT Keytruda saved my life. My last infusion was in 2017 and have been Stable since. My story is actually written up in The National Cancer Institute under ImmunoCommunity!  I submitted my story to give other patients Hope and Inspiration who are living with Metastatic Disease! 

So.... getting back to the Anemia... I was soooo sick. Most of my doctors think it was from the Keytruda.... I think it’s from the absence of my colon. I’m the one who insisted that I be checked for Anemia. I had alllll the symptoms. The Fatigue was consuming and I became more depressed with each and every passing day. And couldn’t leave the house. The clincher was ... my hair started shedding BIG TIME.  My Hemoglobin, Ferritin Level and Iron Saturation was at a dangerous low. I received 2 Iron Infusions spaced 2 weeks apart.  The infusions work right away whereas the oral pills take wayyy too long to START working. Plus orally ... it  does a number on your GI Tract and I just couldn’t take it anymore! I felt like I was reborn after only 2 infusions. I would definitely ask for the infusions especially with a J-pouch! Good Luck and let us know what  happens.  By the way if you want to read my story in the NCI site... it in the ImmunoCommunity Group under Colorectal Cancer and my name is Janie Peskin. 

Take care 

Janie

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