I’m back! My name is Autumn and i just turned 19. This is my third post on here since I was diagnosed with Severe ulcerative colitis and spent 2 weeks in the hospital at age 17. I’m here once again seeking advice and opinions.
A Little More about me:
I love to bake, take walks, dance and am currently looking for a bakery job. or at least i will be when i get things under control.
Current Colitis Symptoms:
Is It Really No Colon or Cancer In the Future?
Well about two months ago all my symptoms started coming back worse than ever before, because of this i had to get iron infusions and 2 blood transfusions and take off work because i was so anemic i kept almost passing out. Well turns out that the remicade that id been on was no longer working at all because my body had built antibodies to it. I talked to my doctor and now he has me starting a shot called humira (which I happen to be scared of needles. lol). Its a bit scary, it has 4 cancers in the lable alone. On top of that shot he wants me to start an oral medication called 6-mp. That has major side effects (also major nausea and hair loss) and is normally used to treat an acute cancer. basically its a very low dose of chemo.
Taking both of these medicines together is very frightening because it suppresses the immune system enough that a simple cold can easily turn into pneumonia.
But the more frightening reason is because in the humira warning it specifically says (and i quote)
“a rare type of cancer called hepatosplenic T-cell lymphoma (HSTLC) has been reported in patients using TNF blockers, including this medicine. These cases have been fatal. Most of these cases occured in teenagers or young adults and most of these patients had Crohn disease or Ulcerative Colitis. Patients who developed HSTLC were usually using medicine along with azathioprine or 6-mercaptopurine (6-MP)”
Scary Right? I’d reach every requirement to get that cancer. So my questions are simple,
What do you think i should do? keep in mind its either this or surgery.
Is anyone else on humira? or 6-MP? or both?
How is it going?
I’d really appreciate anything you guys have to say. Any reply would be nice at this point. haha
Remicade had always worked the best for me and had no side effects
written by Autumn
submitted in the colitis venting area