Swimming Ten Miles Down The Nile
For the longest time I have felt ashamed of myself and have been in complete denial. I like to say I was swimming ten miles down the Nile. Today I feel different. I have been a member of this fabulous site for maybe a month and I have read many life stories that are quite similar to mine. I hope that my story helps someone else.
At age thirteen I experienced my first bout of stomach problems. I was forced to school day after day with pain and discomfort that my mother originally thought was non existent and in my head. She basically thought I was trying to get out of school as some children try to weasel their way out of school but this was not the case. She eventually took me to the doc and then to my first Pediatric GI Dr. where I was first diagnosed with Chronic Ulcerative Colitis. They treated the flare up. I was pumped full of steroids and antibiotics. Unfortunately the fare ups just kept coming.
Age sixteen was very memorable! This was the first year where blood started appearing in my stool. I explained to my mother what was happening and she brushed it under the rug explaining to me that many people can get a little blood in their stool from time to time and its perfectly normal. I brushed it off too. I was still able to go to school and function but the bleeding progressed. The toilet would be full of dark red blood water at times. I finally had enough and told my mother to come look in the toilet and see the blood. It definitely started to scare me. She completely freaked out! My mother was the type that if she couldn’t see anything wrong on the outside then we were okay. Also I was an A student, took accelerated classes, president of my art club and attended Navy JR ROTC so i was encouraged by her to keep going and fight through not feeling well. I guess it was my fault for not expressing the amount of blood in the beginning and by that time I was pretty much immune to the stomach pain. Instantly she took me back to the doctor where I met Pediatric GI Dr. Whitney at Medical City Dallas. She was so caring and sweet to me. Genuinely a caring doctor. She expressed to me that she was shocked to see so many young children coming in with GI issues that would only happen when your older. Once again I was pumped full of meds. I counted over a 100 pills a week i was taking. Iron, steroids, vitamins, antibiotics etc. At that time I was on home bound schooling where the teacher would come to my house for my lessons, three months on and three months back at school freshman and sophomore. I think the toughest part was not being able to keep up with my classmates and friends. I had to quit ROTC, lost my presidency with the art club but I did keep up with my grades. It became pretty lonely at times and I kept to myself a lot.
Age seventeen was pretty tough! The bleeding continued. My face was swelled up and I had weight gain due to all the Prednisone or steroids. I was so tired of taking pill after pill. Dr. Whitney finally expressed to me that there were options to give me back some kind of quality of life. A total colectomy with option one being an Ileostomy and option two being an internal J-Pouch. After meeting with Dr. Macaluso, GI Surgeon Medical City Dallas, I opted for the internal J-Pouch. It was a pouch constructed out of my small intestines and attached to the sphincter. Dr. Macaluso was shocked and described my colon to be as thin as tissue paper in some sections. While everything healed i had a temporary ileostomy for three months. I remember it being one of the worst times of my young life. The ostomy constantly leaked and burned my skin leaving me in excruciating pain at times. Also the first day I was home I vomited from the pain meds and busted open my incision. My mom had to clean it and pack it with gauze until it healed from the inside out. The incision healed and I had the reversal done before my senior year of high school. The J-Pouch worked but I still had to empty often and there was some cramping. I figured it was normal and I didn’t put much thought into it. I eventually graduated and even got married. I continued on my life as normal as possible. Just had frequent trips to the bathroom.
Then at age twenty-one I was diagnosed with Pouchitis in the J-Pouch. I was once again treated with meds. My husband and I grew apart and we eventually divorced. I spent the next 3 years dealing with J-Pouch problems until finally I was re- diagnosed with Chronic Crohn’s Disease. I moved to Abilene and went through many small town doctors that only could help me by medicating me with auto immune suppressants and tons of other meds. The only solution was to have the J-Pouch removed and it frustrated me because it seemed like all the doctors wanted to do was treat the problem and not solve my problem. My body was rejecting the J-Pouch. By that time I was out of a Job and too sick to move. Spent a year in misery with no treatment. I found myself on the indigent program. I developed fistulas and even a vaginal fistula overnight it seemed. The GI surgeon in Abilene did an emergency ileostomy the next day. He explained to me that he was not able to remove the J-Pouch because there was so much active Crohn’s and it was so diseased he couldn’t touch it. With the J-Pouch still diseased it continued to leak and secret mucus and i still had the cramping and pain. I was miserable! I went through doctor after doctor. One GI surgeon refunded my consultation money and told me there was no way he even wanted to attempt the surgery. Finally I found my way to Dr. Fleshman at Baylor Dallas!! He saved my life and was able to remove the J-Pouch. He even found 6” of bowel at the top of the J-Pouch that he added back to the bowel that i had left, a grand total of four feet.
I healed and went back home to Abilene. Everything seemed ok. Three months out and I was installing a wood floor even. Then it seemed like maybe I gave myself a hernia. I was beating myself up and figured I messed up the surgery by doing too much. The pain turned into a huge lump in my stomach the size of a grapefruit. I was care flighted from Abilene back to Baylor Dallas on Christmas Day 2015. I was medicated pretty good so I was not nervous at all. The pilot was even letting me take pictures of things he pointed out that he thought i would want a picture of. The next day my partner for four years called it quits through text message. He said he didn’t want to have to take care of anyone! Broke my heart! It was a pretty low moment for me. Thankfully my mother was there for me once again. Come to find out the section that Dr. Fleshman tried to save was still diseased and it developed holes that was leaking gas and stool into my abdomen. I remember I couldn’t eat and they had me on TPN for thirty days. After ninety days in and out of Baylor Hospital Roberts Floor fifteen I was finally healed! I had three and a half feet of bowel left, a tummy tuck on the house, a barbie butt and my stoma was relocated from the lower right abdomen to the upper left. On top of all that, I developed an opioid dependency while I was there and went through the worst withdraw getting off that stuff! Went cold turkey and let me tell you, my blood was boiling for a week straight! I was miserable but I made it with no addiction.
So here I am! I have experienced some scary things! Surgery, pain, shock, pic lines, medication, addictions, withdraws, side effects, omitting foods, adding foods, extreme weight gain, exstreme weight loss, loosing my teen years, being abandoned by loved ones in sickness, insecurity, finding clothes, finding the right doctors, waiting for treatments, finding the right ostomy bags, outrageous medical bills etc. One full year later and I am living my life like I never even experienced any of this. I find that sad now that I am reflecting. I am telling myself I need to embrace my history! This is my story and I am not in denial anymore! I am not perfect and I can not live as if this never happened to me. I am learning a lot about myself. Number one thing I am learning is to love myself! I am learning to love my story! I am here! Dear God, I am here! I am one of the lucky ones or blessed I should say! So here is to looking forward to the future and embracing my past!