Posted 12/9/2014 11:31 AM (GMT 0)
Hey all,
Had my colon out in '09 after developing dysplasia and battling moderate to severe UC for about 9 years. It was a rough road when I had the disease and when I had my colon out. Lots of complications and reversal failed, so I have been living with temporary bag since 2010. I have been working up the courage to get reattached again and finally felt close to being ready. Started in summer with an abscess that led to a surgery which drained more than two cups of pus from me ... I spent eight days in the hospital in June. I was siiiick LOL. Hurt my back in late August and had awful, awful pain I put up with for a month and a half due to lack of insurance. In late September, I thought my abscess was returning. My local surgeon (not the one who did my colon surgery - he's out of town - but the one who treated my abscess) went back in and drained a small amount of infection. It was nothing like this summer. But, he did notice something different inside - a mass. Biopsies showed cancer. It's been a roller coaster since. Because I've had so many surgeries, my insides are put back together in a crazy way. My surgeon recommended I go out of town for treatment to NYC so I could give this my best shot. The prognosis is that it's going to be a very tough road and I will need surgery that takes out at least my anus and rectum and at most, possibly my uterus, ovaries, tailbone, pelvic bone, and maybe even some vaginal scraping, depending on the extent of this tumor. I'm 33, no kids, but I want them badly. Suddenly, I had a couple of weeks to find a surgeon to care for me and an oncology team - as well as fertility specialists. I had to leave work because of the amount of pain I am in. I'm not in a position to freeze embryos but am hoping to either keep my uterus or freeze my eggs or both. It's insane. It's a lot.
I'm wondering if anyone on here has had a similar path? Apparently, the surgery I'm facing is very rare. The big big hospitals only do it a handful of times of year, if that. I can't get over God's sense of humor in giving me this lol. I finally work up the courage to try to get my ostomy reversed and I get cancer, which means I will have a permanent bag. I experience a range of emotions everyday and am trying to be positive, but I feel like I have more than paid my dues. It's just unfair.
Pity party over.
Thanks for reading!