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!
amietwin1
Jul 10, 2014 1:41 pm
mild_mannered_super_hero
Jul 12, 2014 11:44 pm
Welcome to the site, you'll find good info and good people here.
Primeboy
Jul 14, 2014 3:07 am
Hi Amie. Thank you for sharing your story and your wonderfully reflective and analytic attitudes. You and your sister made a painful but necessary decision, and your courage was what actually gave you the lifeline. All I can say is you should continue to trust your sound instincts. On another note, your mother has gone through enormous stress and pain in recent months, and I know you will be a source of great strength for her. Welcome to our community. PB
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Posted by: Karen & Stella
Fay,
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen