This week we have a lovely lady called Ginger who is going to tell us about her journey through diagnosis, surgery and also being able to have a healthy pregnancy with a stoma.
My journey started in 2012. I was so sick. I lived in the bathroom, spending hours on hours in agony with the uncontrollable urges which felt like pregnancy contractions. As I sat on the throne, I also had my head in a garbage can throwing up from those punches to my gut. Nothing would stay in my body, so I stopped eating trying to relieve my pain. The cramps were the worst, I can’t even describe them. From being in the bathroom so much, I hardly slept; I couldn’t from all the pain. I literally lived in the bathroom. Laptop set up for endless watching of Glee, the music was what got me through my rougher days. I was in and out of the hospital with zero help.
Finally it took two ambulance rides on 2 separate occasions to have them take me seriously. I was fainting and blacking out from the little blood I had left in me. I became anaemic; I needed three different blood transfusions. I spent three months living in the hospital. I was the youngest patient on every floor I lived on. The nurses took such good care of me. They could never find my veins, I was black, blue and purple all up my arms and wrists from countless jabs with needles. It usually took 60 minutes and 3-4 nurses to get a line in, if they could! Some nights they would just give up and leave me unhooked from everything, I loved those nights, where I could actually move my arms around. I was always hooked up to 2-3 pumps / IV stands. Both arms were hooked up to IV’s. Eventually they put a PIC line in my arm because my body couldn’t handle the needles anymore.
At this time I was having 1-2 scans and X-rays a day, each day was getting harder and harder to have them done. I was so weak, I couldn’t stand or walk, I was going to the bathroom in a bed pan. At this time I knew I had Ulcerative Colitis the surgeon told me it had attacked my entire large intestine. I was so weak, I would get weighed once a week, and every time I was losing. I dropped 35 pounds in 3 months. I left the hospital at 99 lbs. All I wanted to do was leave the hospital and go home, I kept telling the doctor I felt better, I was lying but I was scared and just wanted to be home. At the end of the stay, I was begging them to keep me there when they tried to send me home.
At that point I was too scared to go home because I thought I was going to die. And I was almost at that stage. I flat lined once in the ER when I first was brought to the hospital. I was talking with my boyfriend and then stopped talking, closed my eyes, and the machine hummed and long note. I woke up to nurses at my feet with paddles at the foot of the bed. Unknowingly I finished my sentence that I was telling Russell, as if nothing had ever happened. (He told me this story months after I was discharged from the hospital, otherwise I would have panicked the entire time I was there)
Russell would come visit me every night after work, and stay with me until he was too tired to stay awake. Most nights I was in too much pain, so I would take morphine and pass out as he held my hand and just sat there watching me sleep. My parents were there every day too, day and night. My mom would sleep in my room, on a chair, on a bench, on the floor if she had no choice. She was my rock. At first I didn’t want to talk about surgery, to me it wasn’t an option; I wasn’t that sick but I was. I would cry thinking I had to go under the knife. But by the end I was begging for the surgery. I finally said to the doctor cut me open or just let me die, I would rather die than be in this pain any longer. I still didn’t even know what the surgery was; I didn’t know what an ostomy was or a stoma. Nobody told me. They would draw pictures for me and try to explain, but I was so sick I didn’t care what they were saying I just wanted it whatever it was. My dad would show me YouTube videos of girls my age going through the same process. And I actually talk to most of them today!
My surgery took 4 hours, 1 hour longer than told. He wanted to make sure it was done right. As soon as I woke up, I felt zero pain. It was incredible. I looked down at my stoma for the first time and I was amazed. I never once felt hatred or sadness. I was happy to be alive and be pain free. I stayed there for 3 weeks afterwards; it took me 3 months to learn how to walk again. I used a wheelchair and a walker for months. My belly incision had opened up at the bottom from the steroids I was on. So I had to have it packed daily by CCAC. The hole in my belly was 4 inches deep and 1 inch wide. After my recovery (4 months). I took a vacation to Indian Rocks Beach Florida, where my boyfriend proposed to me as we walked along the sand and sea. We were married 4 months later. Time as we saw it was unknown at all times so we now took nothing for granted.
We then one year later became pregnant with our baby girl. Something I thought wouldn’t be in our cards. I had a stress free easy pregnancy. After baby Sky was born, I had suffered from pressure sores under my ostomy flange. They are deep and wide and oh so painful. I have been treating them for 8 months now, they healed up and then all of a sudden a week later came back again. Doctors have told me they are from the tender skin from when my belly stretched and contracted after birth. I am still treating them now. Along with three abscesses that I just can’t seem to get rid of. They are incredibly painful, and bleed constantly. I haven’t been able to work for years due to my wounds and pain and illness. But that’s not the case for everyone. I have just had a hard time with leaks and broken skin. Although its sounds like I am only in pain these days. Nothing compares to the pain I had before my ostomy surgery.
Without it I would have died (the doctor told me he thought I was leaving the hospital in a body bag instead of a wheelchair). Life with a stoma, you can get married, be loved, be intimate, start a family! Nothing is impossible; I just may take a few extra steps than the next guy, and be a little more cautious. I no longer spend endless hours in the bathroom crying from the pain. I am having an MRI, and a sigmoidoscopy to see if I in fact have Crohns in my rectal stump, since I am having so many odd symptoms and broken skin. Once we figure out what’s going on inside of me, we will know if I can have a reversal or have a removal of the stump and then have a permanent ileostomy.
Life is terrific, and an option for me due to my ostomy surgery. I owe my life to my surgeon.
Thank you Ginger! I love the fact that your pregnancy had been uneventful and you and Russell have been blessed with beautiful Sky <3
If you would like to take part in the Let’s Be OstoMATES series please message me on my page.