Good morning everyone.
Today is my first full day out of surgery. It is honestly crazy how good I already feel.
It is still difficult to do some things. For example, I'm only able to type this with one hand. My stomach is still in a bit of pain; I'm also very weak and dizzy. By my bedside, I have a small button than I'm able to press every now and then, and pumps Morphine into my body. I'm stuck on a clear liquid diet, at least until tomorrow. They will start me on soft foods, such as oatmeal, and breads.
The ostomy bag isn't all too bad. I'm recovering quite quickly, and already producing waste through my stoma. Ive also noticed that I pass gas through the stoma, so its quite funny when it happens. I just make light of it. If you feel that it is embarrassing, just know that you have just been though a surgery. When it happens in public, just explain to people what you have recently been though a surgery, and that you don't have control over your gas. People are more understanding than you may think.
I met the doctor that will be helping me learn how to use and care for my bag. Her name Irma Rivera. She is a very sweet lady, who helped make the current situation and learning experience enjoyable. She provided me with a small booklet, that explains how to do things, as well as helpful tips provided by other people that have had the surgery as well. I will talk about some of the stuff in the booklet another time, only because I'm a little dizzy while typing this.
Some things I'm learning right off the bat, are pretty important. I was able to get out of bed for the first time, and I noticed I was extremely weak, dizzy, and achey. I took my time, sat up, and just sat there for awhile; this helped immensely. Take your time walking. I was able to walk to the bathroom on my own, which was very satisfying for me. My nurse told me not to drink too much, it may cause my to puke, and we obviously don't want that. Its actually quite interesting. They made several different small openings in my stomach for the removal. They didn't stitch the holes back up, they actually used a form of medical super glue.
With a little luck, I will be out of here by Saturday. These are Dr. Greenstein's words. I'm am very excited! I would like to thank him and his cohorts for doing a wonderful job on my stomach and taking great care of me.
Dr. Rivera has told me about some awesome ostomy bags, that I think I'm going to invest in. They are called Sensor Mio bags. This is a new type of bag, that are supposed to make living with a bag a lot easier. The coolest part about them is that water bounces right off of them. I really wanna give them a try. After I measure my stoma, I'm also going to invest in some fabric ostomy pouch holders. If you'd like to check them out, I'll leave the link for you right here!
ostomybagholder.com
I'm very excited for this experience, and looking forward to it. Thank you all for the support, and please, if you have any questions at all, feel free to ask them. Now I'm going to continue enjoying Shark Week.
Be Well
Johnny
Thursday, June 30, 2016
Tuesday, June 28, 2016
The Surgery
So tomorrow is the day. The day I will officially be "cured" of Ulcerative Colitis. A lot of you are probably wondering about the prep, and about the surgery, so you may want to continue reading.
I live in New York, a place where we have very advanced medical technology. I am very thankful for everything that is being done for me. The man that will be doing the surgery is Dr. Alexander J. Greenstein, a man who has done many surgeries like this before, along side his father. I believe I am in good hands.
The Surgery
There are three surgeries. The first surgery, which takes place tomorrow, will involve removing the colon. They will make several small incisions through my stomach, and remove the infected parts of my colon and large intestine. Depending on the doctor, and the doctors experience, the surgeries can vary in length. Greenstein stated that my surgery should last about 3 hours. They will create a stoma; a stoma is a small opening in the abdomen that is used to divert the flow of waste in the body. This, will obviously be connected to a colostomy bag. Even though I would like to live without one, I'm going to have to use it for the next few months. Should be interesting; maybe even freeing. (haha)
About 4 months later, I will go in for my second surgery. During this surgery, they will create what is known as a Jpouch. This will act as my new colon. At first, this Jpouch will only be able to hold the amount of an 8 ounce can of Coca-Cola, but as I age and grow, it will grow with me. It will soon be able to hold as much as a 64 liter bottle of Coca-Cola. Thats pretty exciting! During this time, I will still have to have the colostomy bag attached to me; the Jpouch will not be able to fully function on its own right away.
The third and final surgery is another 4 weeks after that. During this surgery, the check and reattach everything, and make sure everything is working properly. They sow up my stomach, and I'm free to live my life.
Pretty scary huh? Honestly, I think I'm the least nervous of anyone. I know what its like to deal with the constant stomach pains and daily struggles that UC has caused thus far. I am ready for this.
The Preparation
I've always hated prepping for my colonoscopies. Not being able to eat for a whole day is just miserable. On top of that, you're downing laxatives and clear liquids like it's going out of style. It is truly unpleasant. For this surgery, You have to do the same... Except, for two days instead of just one. I'm currently on day two of fasting. I'm told to drink Magnesium Citrate, which isn't actually too bad, because I got the cherry flavor. I bought a 10 oz. bottle, and I need to drink 5 oz. at 11 am, and another 5 oz. at 4 pm.
I've been eating ice pops non stop. They calm my stomach down a little bit, and they taste great! You're allowed to drink clear liquids the day before, including tea, coffee, soda, juice, water, clear broth and jell-o. The best part about it is that I'm able to eat any color I please. Normally, you can't have red/blue colors, so this is a nice change. On the first day of dieting, I did cheat a little bit. (I was given permission to) I was allowed to sneak in a small amount of food. I decided to make one scrambled egg, and two slices of toast. I also may have such in some crackers, but don't tell anyone!
I was prescribed two different types of antibiotics, which I have to take the day before the surgery. Neomycin, and Metronidazole. Need to take them three times; 1 pm, 2 pm, and 11 pm.
I also must use a Hibiclens wash. My girlfriend was able to lovingly provide that for me. I have to use it twice. One the night before, and the next on the day of the surgery, before I go to the hospital. Hibiclens is an over the counter liquid soap. I've never used it before, so it should be interesting. I'll have to take my shower backwards, and use my shampoos and conditioners first, though.
Am I nervous? Yeah, of course, but I'm also excited! I have a very supportive family, and not many people are able to say the same, unfortunately. With them by my side, I know I'll be protected and safe. I love my family, and I'm very grateful that I have the chance to be rid of the prison that is Ulcerative Colitis. After I'm healthy again, I plan on going somewhere nice with my family and girlfriend.
I will continue to keep everyone updated! Fingers crossed!
Be Well!
Johnny
Monday, June 27, 2016
My Journey
Hello there,
As promise, I will tell you my story.
In 2013, I graduated Susan E. Wagner high school. High school was definitely and interesting experience. I had a wonderful summer, and went in my first cruise. I played football in high school, it was a great time; high school is nothing without playing a sport. You really have a fuller experience. I was a big kid in high school. I was 5'9, about 210 pounds. After I graduated, I was determined to lose the weight.
So, I worked my butt off. I worked out everyday, for a minimum for an hour; 7 days a week. I actually did lose a great amount of weight. I dropped my weight to about 180. That wasn't enough. I wanted to lose more weight, so I started running more. Miles upon miles, I lost more weight. At about 170 pounds, I started noticing changes in my bowel movements. As I ran, I started to experience very bad pains in my stomach. There was blood in my stool; small amounts, but noticeable enough to where I saw it. I would actually force myself to use the bathroom. Why? I'm not sure. I guess I liked the feeling of an empty stomach. I kept all this to myself; that was my first mistake. When you start experiencing this like this, you need to tell someone. A parent, a friend, a doctor; anyone.
Eventually, something kicked me in my brain that I needed to tell someone. I informed my parents, and they took my to my first doctor. His name is Dr. Laqua. I don't remember what he originally diagnosed me with, but it wasn't UC. He gave me my first colonoscopy, and put my on Asacol. Everything seemed to work out of the first year, but that was soon to change.
The medications were slowly not working, and I continued to keep that to myself. Over the summer of 2014, I flared up, and did not get treated. I didn't know what was happening to my body. In September of 2014, I landed myself in the hospital. I had been standing at my workspace, and started feeling extremely weak and faint. I begged my boss to let me leave early; which she let me. I laid in bed all day, until I visited my primary care doctor. This doctor sent me to the ER, where further tests were run. Turns out, I was severely anemic, with a hemoglobin count of 4.1. I was treated, and started to feel a lot better. I was given a new GI right out of the hospital. Personally, she didn't sit well with me, so I changed my GI again. The man I was now going to had treated my cousin, who also suffers from UC. Unfortunately, he was unable to get my UC under control as well, even after he preformed his own colonoscopy on me. He then sent me to my favorite, and final doctor, Dr. Aberjel.
This man has helped me through a lot, and has been my longest running GI, and my current GI. Dr. Aberjel unfortunately had to put me on steroids a number of times, seeing as how a lot of the drugs I had tried while being with him did not work. I feel as if I have tried almost any drug, even though I haven't. Dr. Aberjel first out me on Mecaptopurine, which actually at first, made me very ill, and also landed me in the hospital. The next major drug I tried was Humira. I used Humira for about half a year, while also being on Prednisone. As I weened off of Humira, it showed that it wasn't the drug for me. After we washed that out, we tried Cimiza. I took Cimzia for about 4 months, while weening off of Prednisone again. It also didn't work. I've been on and off drugs, and tried many things. I've had many colonoscopies, and about 9 different blood transfusions. With these blood transfusions, my blood changed. I have different types of anti bodies in my bloodstream because of all the transfusions. One of the transfusions actually didn't work because of this, and left me ill once again days later.
Long story short, I've been through a lot. I may be leaving out a few details, but theres a lot to remember. UC has affected many things in my life. It has affected my ability to succeed the way I would like to in school. It has hindered my ability to stay healthy and keep a good workout routine. Most importantly, it has affected my relationships. I am always in a low mood, and can come off a bit angry or boring to people. Ive angered my amazing supportive girlfriend, and have been mean to family member when they didn't deserve it.
Most people don't realize the affect UC has on our bodies. We always need to keep an eye out for the nearest bathrooms wherever we go. We need to watch what we eat, and keep track of medications. It's not an easy life style.
This is why I have decided to do the surgery. On Wednesday, June 29th, I will be having my first of three surgeries. (I will explain the surgeries in a different post, their preparations, etc.) I will continue to update this blog with my story, as well as answering questions to the best of my ability. If you, or anyone has any questions at all, feel free to email me at jorgano72@gmail.com
Be Well;
Johnny
As promise, I will tell you my story.
In 2013, I graduated Susan E. Wagner high school. High school was definitely and interesting experience. I had a wonderful summer, and went in my first cruise. I played football in high school, it was a great time; high school is nothing without playing a sport. You really have a fuller experience. I was a big kid in high school. I was 5'9, about 210 pounds. After I graduated, I was determined to lose the weight.
So, I worked my butt off. I worked out everyday, for a minimum for an hour; 7 days a week. I actually did lose a great amount of weight. I dropped my weight to about 180. That wasn't enough. I wanted to lose more weight, so I started running more. Miles upon miles, I lost more weight. At about 170 pounds, I started noticing changes in my bowel movements. As I ran, I started to experience very bad pains in my stomach. There was blood in my stool; small amounts, but noticeable enough to where I saw it. I would actually force myself to use the bathroom. Why? I'm not sure. I guess I liked the feeling of an empty stomach. I kept all this to myself; that was my first mistake. When you start experiencing this like this, you need to tell someone. A parent, a friend, a doctor; anyone.
Eventually, something kicked me in my brain that I needed to tell someone. I informed my parents, and they took my to my first doctor. His name is Dr. Laqua. I don't remember what he originally diagnosed me with, but it wasn't UC. He gave me my first colonoscopy, and put my on Asacol. Everything seemed to work out of the first year, but that was soon to change.
The medications were slowly not working, and I continued to keep that to myself. Over the summer of 2014, I flared up, and did not get treated. I didn't know what was happening to my body. In September of 2014, I landed myself in the hospital. I had been standing at my workspace, and started feeling extremely weak and faint. I begged my boss to let me leave early; which she let me. I laid in bed all day, until I visited my primary care doctor. This doctor sent me to the ER, where further tests were run. Turns out, I was severely anemic, with a hemoglobin count of 4.1. I was treated, and started to feel a lot better. I was given a new GI right out of the hospital. Personally, she didn't sit well with me, so I changed my GI again. The man I was now going to had treated my cousin, who also suffers from UC. Unfortunately, he was unable to get my UC under control as well, even after he preformed his own colonoscopy on me. He then sent me to my favorite, and final doctor, Dr. Aberjel.
This man has helped me through a lot, and has been my longest running GI, and my current GI. Dr. Aberjel unfortunately had to put me on steroids a number of times, seeing as how a lot of the drugs I had tried while being with him did not work. I feel as if I have tried almost any drug, even though I haven't. Dr. Aberjel first out me on Mecaptopurine, which actually at first, made me very ill, and also landed me in the hospital. The next major drug I tried was Humira. I used Humira for about half a year, while also being on Prednisone. As I weened off of Humira, it showed that it wasn't the drug for me. After we washed that out, we tried Cimiza. I took Cimzia for about 4 months, while weening off of Prednisone again. It also didn't work. I've been on and off drugs, and tried many things. I've had many colonoscopies, and about 9 different blood transfusions. With these blood transfusions, my blood changed. I have different types of anti bodies in my bloodstream because of all the transfusions. One of the transfusions actually didn't work because of this, and left me ill once again days later.
Long story short, I've been through a lot. I may be leaving out a few details, but theres a lot to remember. UC has affected many things in my life. It has affected my ability to succeed the way I would like to in school. It has hindered my ability to stay healthy and keep a good workout routine. Most importantly, it has affected my relationships. I am always in a low mood, and can come off a bit angry or boring to people. Ive angered my amazing supportive girlfriend, and have been mean to family member when they didn't deserve it.
Most people don't realize the affect UC has on our bodies. We always need to keep an eye out for the nearest bathrooms wherever we go. We need to watch what we eat, and keep track of medications. It's not an easy life style.
This is why I have decided to do the surgery. On Wednesday, June 29th, I will be having my first of three surgeries. (I will explain the surgeries in a different post, their preparations, etc.) I will continue to update this blog with my story, as well as answering questions to the best of my ability. If you, or anyone has any questions at all, feel free to email me at jorgano72@gmail.com
Be Well;
Johnny
A Little About Me
Hey there,
My name is Johnny. I've been a sufferer of Ulcerative Colitis since 2013.I will get more into my story later.
I'm a 20 year old college student, just trying to live life to the fullest. I work at a school, with amazing children. I have a wonderful family, as well as the perfect girlfriend. Not all can be perfect though. Ulcerative Colitis entered my life and change everything. Within the next few days, I will be fixing that though, I will be getting 'the surgery', and will be changing my life. You will all be able to read along my journey of living with this surgery, and experience it with me. The diet, the pain, the constant changing, and the freedom of being able to live life.
Be Well,
Johnny.
My name is Johnny. I've been a sufferer of Ulcerative Colitis since 2013.I will get more into my story later.
I'm a 20 year old college student, just trying to live life to the fullest. I work at a school, with amazing children. I have a wonderful family, as well as the perfect girlfriend. Not all can be perfect though. Ulcerative Colitis entered my life and change everything. Within the next few days, I will be fixing that though, I will be getting 'the surgery', and will be changing my life. You will all be able to read along my journey of living with this surgery, and experience it with me. The diet, the pain, the constant changing, and the freedom of being able to live life.
Be Well,
Johnny.
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