Hi all! I'm Amie. I am a twin, and we both were diagnosed with familial adenomatous polyposis (or FAP/polyposis coli) in October 2013, completely inherited from my late father's side of the family. He sadly passed away in February 2014, at the age of 45, which was due to cancer from this genetic disease. For him, it was too late; he had full-blown bowel cancer in 2010 and was in remission until January 2013. By then, he had both stomach and lung cancer, which spread to his liver and spine, eventually taking his life.
My sister and I had a choice: live with FAP or get cancer. Obviously, we both went for the procedure, a complete ileostomy with a restorative pouch. Yes, it's a lot for us at 23, but seeing my father go through what he went through at such a young age really scared me. It was the only way. Some people I've spoken to, and some of you reading this, might see this as us being scared into unnecessary surgery. But honestly, I feel like we have been given a lifeline.
So how did I cope with this all? Well, I was scared; I almost left the hospital and went home on my admission date. Then I was calm. Then, when they took me in to be knocked out for the surgery, I cried. Then I slept for what seemed like 10 minutes and woke up to the sounds of my mother saying I have an infection, "She's burning up! She's got an infection! I know my child has an infection," to which I mumbled "shut up" over and over again, and the nurses saying it was too soon. I actually did have an infection, and like all mothers, mine was right. I ended up in theatre recovery for 4 days, swollen and in pain. I eventually was reunited with my sister in the ward. Seeing her up and about made me sad; there was something wrong with me. I found out I was in surgery for 6 hours, they found a benign cyst on my ovary around 10 to 15 cm in size, and I was problematic to perform on.
So a week passed, I was told I had to have a scan to see if I had fluid buildup in my stomach; it was pretty obvious as my stomach was bloated and sore. It was confirmed, and as suspected, I had an infection just behind my surgery site, and I also had a rip in my pouch surgery. Apparently, it was caused by my weight (which I think is a load of crap). I came out of surgery, and I had an open wound the size of a grapefruit! Now I had two stoma bags.
Two weeks in the hospital has definitely put me off going back for a reversal. It has now been over two months; I am still recovering, and I am guessing it will be a while before I am back to myself. I just hope the hospital doesn't push me or feed me more cheap talk about health risks!
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I began my Urostomy life February 27th, 2023...a month and a half ago. I stumbled upon this site from another on Youtube and website called VeganOstomy and between that site and this one, most of my fear and worry of not having any answers other than calling the Dr's office recording menu and hoping to hear back in the next day or two for an answer to leaks, skin irritations etc, or just feeling alone and the "no one understands" thoughts I had to look forward to in my mind were all put to rest by these two websites and the community here at MaO!! I have been here for a few weeks now, and the help and support offered by the members here is just amazing!! The information and support is absolutely priceless for anyone recently out of their surgery and have tons of questions or had it for years...sit down...have a good read and you will see for yourself!!