Lori couldn’t recall a time in her life when she didn’t have belly pain or bloody diarrhea. At 15, throwing up twice a day was completely normal. Lori was finally diagnosed with Familial Adenomatous Polyposis (FAP), a condition where hundreds or thousands of polyps form in the colon. A person with FAP has a 100% chance of getting colorectal cancer unless the colon is removed. Lori had hers removed at 16, but had years of trouble after the reversal of her ostomy. She researched her options and now has a Barnett Continent Intestinal Reservoir (BCIR), an internal ileostomy that uses a catheter to rid the body of waste instead of a traditional external ostomy. It has greatly improved her quality of life, and Lori hopes that her experience will help others.
While I was trying to figure out a good way to start my story, I came to a realization – I can’t recall a time in my life when I had normal bowel movements or stool that wasn’t bloody. I was always experiencing some sort of pain, blood or diarrhea – ALWAYS. My mom has told me stories of being rushed to the doctor as a newborn because of constant diarrhea, so in a way it was something I was born with.
I do remember the exact moment I realized something was screwed up in my bowels. It was 1993. I was 14 and spending the night at a friend’s house. I had been having my usual cramping that could bring a Navy Seal to his knees, when I thought, “Crap. I’m not going to make it to the bathroom.” Fortunately for my friend’s carpet, I made it to the toilet and threw up blood. I was freaked out, but didn’t say anything. Later that night, I threw up more blood while simultaneously feeling a hurricane brewing in my gut. I had barely made it to the toilet seat when I felt a burning liquid pour out of my rectum. Bracing myself, I stood up and saw more blood than I thought was possible to live without. I was used to seeing drops of blood, but this was a ridiculous amount. I decided to tell my friend, mainly because I thought I was dying and wanted to give warning in case I fell over on the floor. She said, “Gross.” I left it at that and went on with my life without telling anyone for a year.
When I was 15, I started missing school because of what I was saying was menstrual cramps. I started having bloody and mucousy diarrhea immediately after I would eat or drink anything and I threw up at least twice a day. I didn’t mention this to my parents because I was embarrassed. I would go all day without eating or drinking so I wouldn’t have to be in the bathroom all day, but the cramping never went away. Every day I was wondering/thinking/worrying about what was going on with me. I knew it wasn’t normal to poop blood, but I also didn’t realize how abnormal it was to poop blood. A friend had been telling me about how sick her brother was, and one day she told me that he had Crohn’s disease. I asked her what that was and she said, “All I know is it means he’s shitting blood and might die.” That freaked me out even more, but the amount of disgust in her tone made me think that I would never be able to mention it to anybody. I was just too embarrassed to talk about my bowel habits with anyone.
A few months went by. I turned 16 and still watched my poop. I was now expelling white chunks with the blood. It was starting to overtake the blood because I was running out of blood. It was getting hard for me to walk up and down the stairs at my high school. The days I was able to make it all day, I would get a tardy slip because I would be late. I didn’t have the energy to make it to and from classes in the few minutes we were given. One day in class, I needed to be excused to go to the bathroom. I was in there around 5 minutes before I was able to go back to class. As soon as I sat down in my seat, I felt the urge again. I asked the teacher if I could go again and she, thank God, said yes. I was in there about 10 minutes and a friend of mine came in. The teacher had sent her in to check on me. After class, my teacher pulled me aside and asked if everything was ok. I told her I wasn’t feeling well and she told me that she was concerned about me and wanted to let me know that she was there if I needed to talk. A light went off in my head and I realized that if other people were starting to notice that something wasn’t right with me, it probably meant I was more messed up than I thought. Ironically, 3 years later this teacher would end up dying of colon cancer just months after she was diagnosed.
I had been getting treated for “woman problems” because I kept saying my problems were menstrual cramps. I had been given birth control and sex talks out the Wahoo, but just smiled and shook my head while they preached because I knew it wasn’t the right area. I had to overcome the embarrassment and just tell someone. Finally, the pain started getting so bad that I didn’t have a choice but to tell my mom. One afternoon I told her what had been going on. She told me not to flush and to show her the next time it happened. As if my colon knew it was being challenged, I immediately went to the bathroom. I casually told her to go look in the toilet while I crawled back into bed. The next thing I knew we were on our way to the doctor’s office. When we got there I heard my mom tell him that there was so much blood that it looked like someone had poured a bucket of paint in the toilet. The Doctor was concerned about my blood loss and dehydration levels, so they decided to admit me into the hospital.
I was pumped full of pain medications and antibiotics. They made sure I was rehydrated and discharged me 3 days later. I remember thinking on the car ride home that I was going to die.
My mom had been taking me to see a gastroenterologist, but because of my age he did not do anything. I was finally re-admitted to the hospital. I had lost about 20 pounds, could barely walk from my hospital bed to the bathroom and was not allowed any food or liquids. I had been diagnosed with pan ulcerative colitis. My mom stayed the whole time I was there, even Thanksgiving. My dad brought some food up to my mom on Thanksgiving and I was allowed to eat a little bit because they thought I was on the mend from all the antibiotics. That night all hell broke loose in my body and I don’t remember anything for the next few days or even a week. My parents were told it was time to transfer me to Arkansas Children’s Hospital because there was nothing left for them to do. We were transferred by ambulance and I felt like that was the beginning of the end for me. I had never been more scared in my life.
As soon as we arrived at ACH, I was put in an emergency room while their head gastroenterologist checked me out. My mom had to stay and fill them in on everything because my dad was having to speed-wheel me in my wheelchair down the hall to the bathroom every 5 minutes. They did a few x-rays which showed that all the pills I had been given orally were piled up in my stomach. My colon was covered in polyps and they were spreading to my small intestines and I had ulcers everywhere. They decided that the best route was to pump me up with steroids and get my body strong enough for surgery. All of this was a blessing in disguise because at ACH we were told for the first time that my colon was precancerous. I had Stage I colon cancer. Finally, an answer. This news sucked, but at least now someone knew how to fix me. I spent the next week getting ready for surgery, physically and mentally. I was ready for surgery, because I was ready to eat. I had not had anything other than ice chips in weeks. We were constantly getting gift baskets sent to the room, and someone had sent one with some peanuts. My mom left the room for 1 minute to get something to drink and I crept out of my bed, moved all 500 of my i.v. poles and grabbed a peanut. I hopped back in bed, shoved the peanut in my mouth and chewed enough times that I could have fed it to a baby bird. Big mistake. Later that night I was in uber pain.
December 1995, surgery came and went. My epidural did not take, so I had my first of many experiences with a pain pump. Wonderful invention! When I woke up, I was in the most excruciating pain. Everything hurt. My body was on fire. My entire colon and a couple inches of my small intestine were removed. I had an ostomy.
I was 16 and I had an ostomy! But since I was 16 years old and very vain, I hated the ostomy. I refused to touch it or the appliances. My skin was being eaten by the acid and I was in misery. I wanted to be rid of my ostomy. My surgeon decided to try an ileoanal anastenosis. I had to have 2 more surgeries to let this happen. He was going to try to build me a J-Pouch. I did not have enough length in my intestines to have the J-Pouch, so I had a pull through. My small intestines were attached directly to my stomach and my rectum. On my final surgery 6 months later, I woke up and my stomach was whole. My ostomy was gone. I had been expecting to finally know what it was like to have normal bowels, but I was so wrong. Since it was a straight shot from my stomach to my rectum, I would eat and need to go to the bathroom. The Doctor decided to put me on Lomotil to slow down my G.I. system. I lived off medicine, still lost a lot of blood, and still spent quite a bit of time in the bathroom, but I was cancer free.
I was able to live like this for 14 years. I was married and underwent fertility treatments due to the scar tissue and damage that occurred to my uterus during the surgeries. 1 month before my daughters 2nd birthday I had to have a hysterectomy. I had a polyp on my uterus and since the thing wasn’t working right I decided that it wasn’t worth the risk. I’d sidelined the big C before. I didn’t want to play my odds again. But it 2005, things started getting bad.
I was exhausted and in the bathroom every hour. I was losing so much blood that I had to have blood transfusions. I really had to watch what I ate and when I ate it. I was scared because it was happening all over again.
In May of 2008, I had my usual check up scope and was told that it was time to start considering my options. What that really meant was, “Lori, your butt is failing you again.” My mom had been doing some research on my “options” and found out about the BCIR ostomy. It’s an internal continent ostomy that you insert a catheter into when you need to rid yourself of waste. I was all for it!
July 10, 2008, I checked into The Palms of Pasadena Hospital in St. Petersburg Florida. On July 11, Dr. Rehnke – my angel – gave me a BCIR ostomy. The surgery consisted of surgically creating a pouch, or reservoir, on the inside of my abdomen, made from the last part of my small intestine (the ileum). The pouch is used for the storage of intestinal waste. I stretch it over an amount of time, and that’s it! Twice a day I empty it – morning and night. Being that I’ve spent half my days in the bathroom this seemed like heaven. I’ve had a dozen surgeries, and I’ll admit that this was the hardest. You can’t eat or drink for days after, you’re in pain and can’t really do much for yourself, but The Palms of Pasadena Hospital is the perfect place to be this needy. Dr. Rehnke and his nursing staff were amazing. I was sad to leave them.
I don’t revolve my world around bathrooms anymore. I eat whatever I want, whenever I want. If I had known about this option when I was 16, I would have gone for it then! I now have energy, freedom and happiness. I don’t dwell on the lost years. Instead, I have decided to become a part of the search for the cure. I’m proof that early detection can save you. This should not be an embarrassing topic. Colon cancer is the number 2 cancer killer in this country and it doesn’t have to be. Had I spoken up when I first started having problems, things might have been different. I am a firm believer that everything happens for a reason and I believe that my reason for going through all this was to help save someone else from having to experience it. Cancer is a beast that is hard to fight, but it’s a fight that can be won.
From PHOTO SHOOT CONFESSIONAL