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Thread: Scope finally booked answers soon

  1. #1
    Newbie New User
    Join Date
    Sep 2016

    Scope finally booked answers soon

    Hello everyone,

    I made a post months ago about being worried about my symptoms etc. Iím not coming here to post about what you guys think it is or what not but I wanted to offer an update. I wouldíve found out some answers in September but had to cancel my scope because of my doctor being mildly incompetent and not taking my case of malignant hyperthermia seriously. Basically if you donít know what it is, i can have a fatal reaction to certain types of anesthesia due to a genetic defect on my RYR-1 gene. We found this out because my son was born with the ultra rare genetic muscle disease. Anyways, I needed to get a scope in a larger center in case of emergency surgery from complications and the fact that the hospital I was scheduled to do it had no ICU.

    With that said, a second specialist reviewed my symptoms of bright red blood with my stool, frequent bowel movements with sometimes nothing or a little stool coming out and tenesmus and he took them seriously. He booked me in January 17. I had a period of 4 months where all my symptoms went dormant. My stools returned to normal and no more bleeding. I felt great and then two weeks ago with the great baking my wife does over the holidays it came back with a vengeance. My blood work 6 months later still shows up as perfect. No anemia or low hemoglobin etc. Hereís to hoping itís not the big C but I can provide you all with a word of thanks that I really trained myself to let go of my anxiety. I have my moments still but I stopped stressing back in July and thatís when it seemed like everything went dormant. Anyways hope you are all doing good and thank you for pushing me to deal with my anxiety.

  2. #2
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014

    I appreciate your post. I have wondered about what follow up you may have had. Good luck to you with the scope. Do come back to this thread and give us the update.

    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    August 23, 2013 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    August-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    Jan.6, 2014 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    Sept. 4, 2014 ColonoscopyClear,CT Clear
    Dec. 2014 Follow up BlWk +,CEA .9
    Mar.2015Follow up BlWk +,CEA .6
    June 2015 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Continue ColoRectal Support Group monthly


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