I have so many different thoughts going through my mind as I prepare myself for my take down surgery.
I’m scared and unsure of what life will be like? I always wonder to myself if I’ll be able to keep living a happy life that I once knew only a year ago before I found out I had Ulcerative Colitis. I rewrote my whole story not only to give an update on how things have been since I had my colon removed last September, but to also let others know how and why I ended choosing the option of surgery. I only dealt with the effects of UC for 4 months, but it was the roughest months I’ve ever faced. I would consider myself someone who can handle pain well and I always tried to show I was the toughest guy around, but this disease broke me down to my inner core, it shook my whole world and I knew I needed to find a way to get back on my feet, and even with the bag I feel better now than I ever did during those 4 months in extreme pain and constant worry.
My story begins like this, I was preparing to close out my first full year as a college student, just studying my butt off for my last final before summer. I was walking dogs at my dad’s animal clinic on Sunday afternoon, my final would be the next day, Monday, and while outside reading over some chapter reviews I had noticed my stomach really began to feel very upset, thinking it was something I ate over the weekend I ignored the pain and finished up my job with the dogs. Just before I was going to lock up and head home for the evening, I felt this huge urge to have to use the bathroom, so I ran as fast as I could to the restroom and I barely made it just in time. I went home felt so sick that I didn’t care one bit about my test the next morning and just fell asleep. I woke up the next morning and still wasn’t feeling good so I rushed through my final went home and fell back to sleep hoping this would all pass. After two days of constant cramping pain and running to the bathroom, my dad said enough and sent me to the doctor, explaining all that was going on over the past few days the doctor sent me home with some antibiotics, just like all the times before I figured 10 days on them and I would be back to normal. I finished off the last pill 10 days later and still felt extremely sick, I noticed I was becoming weaker and more tired, I knew it was the lack of sleep I was getting from being in the bathroom all night and not being able to go and find something to eat. My mom had enough of this and sent me to a different doctor, who upon entering the room and seeing the condition I was in sent me straight to the ER.
This being my first trip to a hospital I was so scared and confused (I was always an active healthy kid, I mean I rode my bike 30 miles a day and played tennis a lot). I was admitted right away was started on IV fluids to replenish all that I was losing to the multiple bathroom trips. My blood count was extremely low as well, so they gave me iron infusions to try to get me back to the level I needed to be, I think I was down 7 or 8 point below normal if I understand correctly. I spent a week in the hospital and was sent home with steroids and a few other medications to take until I could get a check up with a GI. So I call and got an appointment 2 weeks later, I did my best to make it those two weeks. I never left my bed or the bathroom, finally the appointment day came, I couldn’t even walk down the stairs I was so weak, my dad had to carry me to the car, (being a 19 year old guy, this was hard to take, I wanted to be so strong and show that I was fine but this was so humbling and embarrassing). Again same thing happened, when the doctor walked in she sent me straight to the hospital, I was checked in upon arrival and started on IV fluids and blood transfusions and schedule for a colonoscopy the next morning. I didn’t even need to flush out my system since I hadn’t been able to eat much the whole time. (I was down to 93 pounds at this point, normally I am around 135.) The next morning came and wheeled down into a white room with a big TV in it, the nurses were super friendly and calming as I was so nervous to go under for the first time ever, all I remember next was they told me to lay on my left side. As I was waking up later that afternoon the doctor had already been by and talked with my mom about what the scoping showed, she told me I had Ulcerative Colitis throughout my entire colon and that the inflammation was as the doctor said, “text book bad”.
I had never heard of the disease before but I was in denial about the whole thing, I didn’t want to believe I was sick or anything, I just wanted to take something and get on with my summer and go enjoy floating the river with my friends or go to the beach like everyone else. I wanted to enjoy a real college summer. After 18 days at the hospital I was able to go home, mostly because I was on a huge dosage of steroids and Remicade, the doctors really felt that I had only two options due to how serve my case was, Remicade or surgery. The mere thought of having no colon scared me to death, so with little hesitation I opted for the infusions, having the first one during my hospital stay. A days fews after I was sent home feeling much better, and told to schedule my next one 4 weeks later. I finally felt I was going to be able to live a normal life once a again, but just two days out of the hospital all turned south again. I was back running to the bathroom and doubled over in pain from the cramping I felt in my abdomen. I called my GI the next morning and she increased my steroid dosage and had me come in for my second infusion the following week. The next infusion came and same result I felt great the first 3 days but by the fourth day I was back in the bathroom, so I knew this wasn’t working out for me like the doctors or myself had planned so I stayed on large amounts of steroids to control the pain and bleeding. School was starting back up and I was preparing to move away, when I realized I would never be able to sit in class long enough to learn everything without running to the bathroom, so I finally for the first time since my diagnoses “googled” Ulcerative Colitis, I began to read about all that I had experienced in the past 3 months, and realized it was a life long disease, I was mad and angry about not being able to find a cure for this and live a life that I wanted to, but after doing a little more research I came across a website called feb162019ihaveuc.mystagingwebsite.com.
I read through some post on it and realized there was a bunch of other people just like me living with UC. I felt much better about the whole thing, I learned of the SCD diet, and got the books and tried to follow it but with little success, but one night as I was reading through the post I saw one written by a guy named Curtis, he was just like me, super active into sports and close to my age who had UC but had to have the surgeries that the doctors had once recommended to me, due to him having some crazy issues, I read his post and read how he was doing so much better without his infected colon inside his body. I was instantly jealous of him because he was out doing things I was wishing of doing. I was so excited and happy to read his stories, that I couldn’t wait to show my mom the next morning so I went down that night and talked to her about it. She wasn’t as thrilled with the idea of the surgeries but I knew it was what I wanted. A few days went by and she and my dad and everyone else finally all agreed that removing my colon would be whats best for me since none of the other medications were working for me. I called up the Colon and Rectal Clinic of Houston and made and appointment with a surgeon later that week. I meet with him and explained everything I could recall about what my summer was like, and he knew that the surgery would be the best thing for me as well. I think he could tell how miserable I was and how I wanted to feel better and get back to school and life, so we made the surgery day for the following week. The surgery day finally came and I was up at 5:30 that morning and nervous and scared but excited all the way to the hospital, once I got checked in, my nerves calmed down because so many things were happening form the time I changed into the hospital robe to them hooking my IV to having the anesthesiologist come by and put in the epidural I never had a chance to think about what life was going to be like with a bag attached to my stomach. They roll me into the surgery room and I just remember giving my surgeon a thumbs up and closing my eyes, I woke up that night, with both my mom and dad in the room, I remember being really hot and wanting the covers off of my but the second I went to sit up and throw them off I got the huge pain in my abdomen, and gasped in pain. My mom came to my side and said not to move, turns out I had 20 something staples down my belly, I learned about my pain button real quick. Then the craziest part, as I came to a looked under the blanket and saw for the first time the bag and my small red intestine through it, I was pretty taken back from this although I had told my self I could handle it, it was still pretty crazy to look at for the first time. I learned how the whole bag worked and was able to empty it really well and everything was going great until about two days later, when I woke up that morning not feeling very well and not really wanting to move or doing any walking like the nurses had ask me to do. The day went by and I felt worse and worse, and started to have a fever and my stomach area felt very tender, my doctor stopped by my room that evening and after checking me over said that he would have to take me down and open me back up to make sure everything was ok. So I went back down and went through the whole prepping stage again, once in the surgery room I gave my doctor a small smile and thumbs up and went to sleep, turns out I had a kink in my drainage tube and the fluid build up was causing a lot of discomfort for me, so they added an extra one and I was OK after that, (only downside was that they were not able to staple me back up due to the skin not being able to hold together, so I would have to pack my incision twice a day until it healed from the inside out. That took around 129 days to heal.) After showing that I could eat food and my stoma was working I checked out of the hospital and went home. I learned to deal with my new bag, and learned to change it very quickly and told the home nurse she wouldn’t have to come after her first visit, I spent the next month laying around and would take small walks around the neighborhood recovering, my abs were very sore from the incision so getting around was a slow slow process but I enjoyed the walks, it was the first time in months that I was able to leave my house and not worry about a bathroom or be in pain from cramps.
After a while I was able to get around with no problems and started to enjoy life again, I was able to hang out with friends and go out to eat and to the movies and everything. I remember seeing 50/50 right after getting out of the hospital in theaters and I felt like I related to that movie with all I been through although I didn’t have cancer, it made me realized all that I have gone through and how far I came. I realized how scary it must have been for my mom and dad and friends to watch me go from being a active 19 year old kid to a 93 pound person who couldn’t even stand without help. I am so thankful for all the support mentally and physically that they gave me and I know I could never repay it back to them but I wouldn’t wish for any more from them. I was so thankful for life and to be able to go out and be among the crowds. All was smooth for the next few months and I was readying myself for a take down
surgery in December just 3 months after the first surgery, but as luck would have it my doctor pushed it off, because he felt I needed extra time to heal, so we schedule it to be in March of 2012. Again just my luck everything is going great and I’m back at school for the spring semester, when one morning in February I wake up and feel like throwing up and noticed nothing had passed through my stoma over night. I put it off thinking it was just a gas blockage and that it would pass, but as I was sitting through class I noticed the pain was increasing and I knew something was wrong.
I called my surgeon and got to his office that afternoon and he said I had some type of blockage, so I was sent to the hospital for observation and to hope it would pass on its own, but after 2 long days nothing, so he said they would have to remove it with surgery, hoping to combine the surgery with my takedown I was somewhat excited for it but during the surgery he realized that the intestines were too dilated to form a good fit so I would have to stick to just removing the blockage and do the takedown another time, when I learned of this I was very bummed out as I was really ready to have this bag off, so after getting out of the hospital and seeing him for a check up we made plans for the takedown to be in May of 2012, so here I am today preparing for my takedown and thinking about all that I have been though and hoping the road ahead is much easier and smoother.
This has been a crazy journey that I know is far from over, but I plan to put this chapter of life in the books and begin to write a new one.