Monthly Archives: July 2013

Paper, Plastic, or Poop?

When I first started this blog, my plan was to update everyone on my health and life after the traumatic event in February. I knew that this would be the best way for me to spread the same information to many people. Whether you’re in Duluth, across the state, country, or as far away as I know some of you are in Australia, thank you for reading. After my first blog post went live, I was shocked by how many people spread the word about When I’m Better, so thank you for that as well.

I know I told you in my first post that I would do my best to shorten the lengths of all future blog posts, so I apologize in advance that I haven’t had the time to update you all as frequently as I’d like and these posts may be lengthy. That being said, between my summer history class and just plain old busy life schedule, I still plan to keep When I’m Better active and updated more frequently. What I post here will likely be about my medical adventures, but it is not limited to that. When I’m Better is not a blog about being sick. It is a blog about living life, overcoming obstacles, getting better, and just living life to its fullest. Its goal is to educate, entertain, and be a source of fun and stories despite sometimes difficult circumstances.

On June 13th, 2013, I had surgery to have a gastrostomy placed. In addition to that, the doctor was going to look around and see if the intestine that remained was still healthy. During surgery, they determined that another 2.5 feet of small intestine needed to be removed. This surgery left me with about four feet of small intestine left when the average person has about 24 feet. I also had a colostomy done. That is what this post is about.

Ostomies are done for many different diseases and conditions. Sometimes an ostomy is only needed for a short time, but for some people it is life-long. My ostomy is a colostomy.

A colostomy is an opening in the abdominal wall that is made during surgery. The end of the large intestine is brought through the opening to form a stoma. After a colostomy has been created, that stoma is now the exit for stool. This means, that I need to wear a special bag that sticks to the stoma on my stomach. The bag catches the stool, which I can empty as needed. The reason I have one is because I am missing a large amount of my small intestine. Due to this, I would have to use the bathroom several times a day, especially very quickly after I eat. My colostomy allows me to go about my day not having to worry about rushing to the bathroom. Although it takes some getting used to, I think it will be better for me in the long run.

I want you all to know that you will not be able to see the bag, so you don’t need to worry. There will be nothing gross or apparent to you. In fact, some people do not wish to tell people they have an ostomy, and therefore, no one knows that they do.

However, I am choosing to tell you all as a part of When I’m Better, so that I do not have to explain myself if you do happen to find out. The stoma has no valve or shut-off muscle. This means that I will not be able to control the passage of stool (or gases) from the stoma.

Yep, you guessed it. It’s loud at times. While this is guaranteed to be embarrassing in the future, it’s something that I’ve been able to start ignoring, and eventually, everyone around me will be able to do the same. I mean, the average person passes gas 15 times a day, so you can’t say that you don’t either. So if I do, just let it go.

And the best part? It all goes in a bag, so even if my ostomy is having a “noisy day,” you won’t be able to smell it. So go ahead, blame your daily gassiness on me. I won’t care, I’ll blame the bag.

But just know, if you try to blame a smelly one on me, there’s no chance it was me, and well…you’re on your own there. ;)

 

An Update

I apologize for not updating this blog more often. Between my health, the online history class I’m taking, and the plain old fact that it’s summer, I haven’t had much time to write a blog post. Now, that’s not to say that I don’t have anything to talk about: I definitely do have some things I’d like to share, and I will, as soon as I am able to find the time to sit down and write until I’m finished.

As for a quick update, I am having a procedure tomorrow which should just be a day surgery. Expect to hear more from me tomorrow night or Friday.

Until then, try not to melt from the heat.

The Beginning

Hello, Internet. My name is Michael Jackson. No, I’m not the King of Pop, but I am the guy who wrote this blog on the Huffington Post. I am not the one who wrote all the books about alcohol, but I am the one who likes to make people laugh,

I am also the one who hasn’t had a meal in almost five months.

For most of you out there, that’s hard to believe, but let me start at the beginning. First off, I will warn you that this blog post is long. Please bear with me: I promise all future posts will be more condensed.

Welcome to my blog. As of this post, I am 19 years old and am going into my second year of college, where I am studying psychology. I am also contemplating a minor in communication, but we’ll see how that goes. I’m from Duluth, Minnesota and that is where I live with my parents and religiously DVR episodes of The Ellen DeGeneres Show. Oh, by the way, this is a picture of me.

I look like your average, every day nineteen year old, don’t I? Well, my life is far from “average” and I am anything but “normal”. I have spastic quadriplegic cerebral palsy and I spend most of my time in a wheelchair. I have had over 65 surgeries and have spent many of my days on Earth in the hospital. For more on all that, please read my Huffington Post blog as that story isn’t why this blog exists.

I created this blog because of what happened to me during the early morning hours of February 21, 2013. Around 1 AM that night, I was studying for a Spanish test and began to get some abdominal pain. I had been having abdominal pain, nausea, and vomiting fairly regularly for the last two and a half years, so this was pretty normal for me. The cure, as always, was simply to lay down flat – the pain and nausea almost always went away when I did that, or at least got much better. I finished up my study session and went to bed. Soon, I realized that the pain wasn’t subsiding; in fact, I was starting to vomit as well – and the pain was getting worse. It just felt…different.  I asked my dad to wake my mom up and the three of us immediately went to the emergency room.

By 3:30 that morning, the doctors placed a nasogastric tube in me and I had a CAT scan. It was determined that I had an obstruction or blockage of some sort. The plan was to leave me connected to the NG and suction with the hope of decompressing the obstruction. However, by the evening of the 21st, it was determined that that plan wouldn’t work and ultimately, I would need surgery.

On the morning of the 22nd, I went by ambulance to Minneapolis Children’s. By the time I arrived, I was in septic shock and had almost no blood pressure. They didn’t know if I was going to make it. I was rushed to the operating room where 1/3 of my small intestine was dead and 1/3 was questionable. The 1/3 that had died was removed at this time. Since 1/3 of it was questionable, my doctors were unsure if it would need to be removed. Because of this, they kept my incision open and put me on a respirator, as well as many medications to support my blood pressure and heart rate. Three days later, when I was a little more stable, I was brought back to surgery to check on whether or not the questionable third “pinked up” or not. It had, all but 10 centimeters of it, which was then removed. They closed me up.

Following the surgeries, I was on the respirator for another week. After being in the hospital for a period of a month, we realized that my intestines were not going to function properly at that time. I went home on TPN after having a port placed in my chest and an unsuccessful attempt to place a gastrostomy tube. It was then I received news that I never wanted to hear: I wasn’t going to be able to eat or drink for a good two to three months. I cried for a few minutes when I found this out, realizing that I wouldn’t be able to have our family friend Greg’s ribs for my birthday.

Hey, you’d cry too if you didn’t get his ribs. They’re amazing.

Food is such an important of our everyday life. It’s amazing how much our lives revolve around it. We blog about it, we talk about it, we photograph it, we even watch shows about it. Food is the celebrity everyone knows and loves, but it’s more than that: it’s social, it’s cultural, it’s enjoyable, and it’s essential. When you want to meet up with a friend, where do you go? A restaurant. Going to the movies? Stop by the concession stand! Food is everywhere we are, everyday.

At first, the fact that I couldn’t have anything to eat or drink was the hardest thing to deal with. People ask me all the time, “how do you do it?” They ask me how I deal with not being able to eat, about how I deal with being sick a lot, in the hospital, or in a wheelchair. Well, I don’t know how. I just do. This is my life. And yes, it does go on.

I try to make the best of every hand I’m dealt.

One day, shortly after getting home from the hospital, my mom brought me shopping with her. And if that’s not bad enough, guess where she brought me. That’s right: the grocery store.

The first few minutes inside there was like being locked in a prison cell. The fresh baked bread, the ice cream aisle, the offers of free samples from overly-friendly staff members – it was all too much to handle. That was, until I started all the mental lists of all the foods I want to eat in my future.

“Mom, I want to try these chips when I’m better.”

“Let’s get these when I’m better.”

“I want this when I’m better.”

When I’m Better.

The blog.