JimmyB's Journey with Gastrointestinal Stromal Tumor (GIST)...

Survivor: Colorectal (Colon) Cancer > Gastrointestinal Stromal Tumor (GIST)

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 2 years ago, Male, Age: 50, KRAS mutation positive: Don't Know, BRAF mutation positive: Don't Know, Stage IIB

  1. 1
    • JimmyB
    • Experience with Gastrointestinal Stroma...
    over 1 year ago
    JimmyB's Avatar

    Removal of rectal tumor

    Procedure or Surgery

    I had a ileus which kept me in the hospital for an extra 8 or 9 days. That wasn't too bad except that the doctors couldn't tell me from day to day when I may be able to leave. But I had excellent care! My entire rectum was removed and I've now had an ileostomy for about 6 months while I complete chemo. I will have reversal surgery sometime around February, 2019. It took a couple months to get my stoma output regulated. I take many meds, including antidepressants, and ADHD meds. My liquid stoma output meant that my meds weren't getting fully absorbed so I had unexpected bouts of depression and anxiety, as well as withdrawal symptoms. I've lately had a few bowel movements. They are urgent-feeling, painful, and (as I've seen described before) I'll have to go three times in 30 min. often continuing to feel slight pain and the urge to go, for hours after, though nothing comes out - this is while I still have my ileostomy. I hadn't thought about it much before, but now that the reversal is coming up, I worry about LARS. I've read here about many people who suffer greatly with tens of bms a day and significant pain, for months or years. I hated my ileostomy (though I've always been incredibly grateful that I always knew it would be reversed - I know I'm so fortunate), but of late, I've felt that the painless ileostomy may be better than LARS. I'm sorry if that's insensitive to people with irreversible stomas. I know I'm lucky, fortunate, and blessed compared to so many others. Still sucks though :)

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
    1 Comment
  2. 2
    • JimmyB
    • Experience with Gastrointestinal Stroma...
    over 1 year ago
    JimmyB's Avatar

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  3. 3
    • JimmyB
    • Experience with Gastrointestinal Stroma...
    over 1 year ago
    JimmyB's Avatar

    Radiation

    This person has yet to add any details about this experience.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  4. 4
    • JimmyB
    • Experience with Gastrointestinal Stroma...
    over 1 year ago
    JimmyB's Avatar

    Chemo brain

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments