Hello everyone!
I know I haven't updated my blog in awhile, but I have good reasons for it. This surgery has (so far) allowed me to live a new life. UC prevented me from doing so much with my life. Although the stoma and bag can be a little annoying, it has allowed me to completely live a new life. Instead of having to worry about where the nearest bathroom is; even though I still do worry; I am able to do so many other things. For example, I am able to go on long walks with my girlfriend, or enjoy a baseball game with my family, and even hang out with my students and play some kickball.
Unfortunately, I'm still unable to workout, or eat everything I would really like to indulge in. I can do light activities such as walking, but I'm still not really allowed to lift heavy things, or do hardcore cardio workouts, which UC prevented me from doing as well. I miss some foods such as mushrooms, salads and steaks, but these are foods that don't digest well and could put me back in the hospital.
I am starting to get pretty good at hanging my bag. I'm not sure if my skin has a problem with my current bags, or I'm having small leaks I don't know about, but I do seem to be having a small problem currently. Thankfully some kind folks on Facebook have been helping me out and providing great advice.
I know it's not too much, but I figured I would provide a small update, seeing as how a lot of people get curious about how I am doing.
***Small side note---- If you would like to leave a comment, I believe you need to either have a gmail account, or a blogspot account. I know of a few people who have tried to leave comments, but they go unseen because of this. I apologize :(
I am unsure of what I want to do with this blog, and if I want to continue writing about my journey, or if I want to write about something else. Thank you all for reading.
Be Well
Johnny
:)
Thursday, August 4, 2016
Sunday, July 10, 2016
Diet
Goodafrernoon readers! A key factor in staying healthy after surgery is watching your diet, and what you put into your body. What you eat can affect what you stoma puts out, and ultimately can determine the amount of times you use the bathroom, what comes out of your stoma and ends up in your bag, what it smells like, and sometimes, if you eat the wrong things, can land you in the emergency room in a lot of pain.
You body needs to receive the necessary nutrients to stay healthy. There are a few foods you shouldn't eat, but some people are lucky enough not to have any problems. Most people, on the other hand, end up in the hospital. Some common problems food can cause to your body are blockages, and partial blockages. These can be extremely painful. What happens is that some food may not digest fast enough as it makes it way though what is left of your digestive system. In turn, this can cause a blockage, not allowing food to exit the body. If you notice pain in your abdomen, swelling around your stoma, little to no output, and you feel nausea approaching, you should definitely take a trip to the hospital and get it sorted out.
If you do not want to take the trip to the hospital, there are a few things at home you can try to maybe move things along.
You body needs to receive the necessary nutrients to stay healthy. There are a few foods you shouldn't eat, but some people are lucky enough not to have any problems. Most people, on the other hand, end up in the hospital. Some common problems food can cause to your body are blockages, and partial blockages. These can be extremely painful. What happens is that some food may not digest fast enough as it makes it way though what is left of your digestive system. In turn, this can cause a blockage, not allowing food to exit the body. If you notice pain in your abdomen, swelling around your stoma, little to no output, and you feel nausea approaching, you should definitely take a trip to the hospital and get it sorted out.
If you do not want to take the trip to the hospital, there are a few things at home you can try to maybe move things along.
- Start by changing the bag, and cutting the opening of the bag a bit bigger. You stoma may be swelling up due to the lack of output.
- Stop eating food; continue with liquids only. If there is no output, you're going to get backed up, and eventually vomit.
- Try taking a warm bath. This will help relax your abdominal muscles.
- Try walking around, or laying down in different body positions. For example, bring your knees to your chest. This will help open your body, and help break apart the blockage.
- Massage the area around the stoma. Most blockages occur below the stoma, and massaging it may help break apart the blockage and move things along.
Blockages are no fun, and shouldn't be taken lightly. If you feel like you may be having a blockage, I recommend you take the trip to the hospital.
You need to maintain a fairly healthy diet. Sure, you can snack, but late at night snacking can cause gas. Gas= Bag filling up with air= Blowout. You need to watch what you eat, and watch what certain foods do to your body. I recommend keeping a food diary, and writing down what foods you have throughout the day, how they digest, and how they affect your output.
A few tips I can offer are pretty useful.
- Chew your food thoroughly. Chewing will help avoid blockage, as well as help digest foods that are hard to digest.
- Eat meals regularly. Instead of 3 big meals, have 6 small meals instead. This will help digestion and prevent blockage,
- Try new foods one at a time, this way if you react to something badly, you can pinpoint it and try it again a different day, or avoid it all together.
- Try to avoid gaining excess weight. It is bad for your ostomy, and for you in general. There are many problems that can occur, such as hernias.
- Drink lots of fluid daily! Liquid is your best friend. It helps move things along, as well as keeping you hydrated. You stoma releases a lot of liquid, and if you had your large intestine removed, you need all the liquid you can get. Water is normally absorbed back into your body through the large intestine, and now that its gone, you should focus on keeping hydrated.
- Remember that not all people react the same to something. Just because you see that someone took well to eating popcorn or salad, doesn't mean you will.
Foods that do not digest properly:
- Cabbage, lettuce, celery, mushrooms, coconut, nuts, corn, olives, cucumbers peas, dried fruits, pickles, green peppers, pineapple
Foods that tend to form gas:
- Asparagus, beer, broccoli, brussel sprouts, cabbage, cauliflower, cucumbers, dried peas and beans, fish melons, milk and ice cream, nuts onions, radishes, soda, sweets, excessive wheat products, fresh fruit
Foods that cause odor:
- Alcohol, cauliflower, asparagus, broccoli, fish, brussel sprouts, cabbage, onions, baked beans, cheese, eggs
Foods that cause diarrhea:
- Baked beans, beer, broccoli, chocolate, dried beans, licorice, prune juice, soup, red wine, hot beverage, heavily spiced meals, and large meals
Foods that help reduce odor:
- Butter milk, yogurt, cranberry juice, parsley, charcoal tablets
There are many different types of foods to try! Don't be scared of trying something new, just make sure you chew chew chew! Just because we have to watch what we eat, doesn't mean we can't enjoy life.
If you're new to the whole ostomy bag thing, like I am, you should watch what you eat for the first 4-6 weeks. You doctor or surgeon will advise you what not to eat. This includes things that are hard to digest, leafy foods like spinach and salad, foods that gave you problems before the surgery, and foods that contain large amounts of fiber.
If you ever need any tips, don't be afraid to message me! You can message me here, or add me on Facebook and send me a message. I love hearing peoples stories, and I love being able to give people advice. Please just let me know that you are adding me from the blog if you do. :)
Be Well,
Johnny :)
Wednesday, July 6, 2016
Day 7
So today I'm feeling great! Food is digesting well, and I've had no problems.
Today, I changed my bag for the first time. It actually went pretty well. I did it by myself, with no help, only because I wanted to see if I could do it. To be honest, I actually amazed myself a little bit. I thought my first time changing the bag was going to be nerve wrecking, but I really did surprise myself.
I didn't eat for a few hours, so there was no leaking or spillage. I touched my stoma for the first time, and its a lot tougher than I expected it to be. I was expecting something really squishy, but it felt more like a really tough bubble. I was able to change the bag in about 10 minutes, and I'm sure I'll get even better at it. Remember to stay calm, and take your time. Don't get nervous if there is any stool appearing as you change the bag. Make sure there is no stool on your skin, and clean everything well; you don't want your skin getting irritated. This will cause rashes and blisters, and that makes things extremely uncomfortable.
I've even lost almost 20 pounds! It's weird, because I'm still on prednisone, and we all know how that drug fattens us up!
I hope everyone is having a wonderful day!
Be Well
Johnny :)
Today, I changed my bag for the first time. It actually went pretty well. I did it by myself, with no help, only because I wanted to see if I could do it. To be honest, I actually amazed myself a little bit. I thought my first time changing the bag was going to be nerve wrecking, but I really did surprise myself.
I didn't eat for a few hours, so there was no leaking or spillage. I touched my stoma for the first time, and its a lot tougher than I expected it to be. I was expecting something really squishy, but it felt more like a really tough bubble. I was able to change the bag in about 10 minutes, and I'm sure I'll get even better at it. Remember to stay calm, and take your time. Don't get nervous if there is any stool appearing as you change the bag. Make sure there is no stool on your skin, and clean everything well; you don't want your skin getting irritated. This will cause rashes and blisters, and that makes things extremely uncomfortable.
I've even lost almost 20 pounds! It's weird, because I'm still on prednisone, and we all know how that drug fattens us up!
I hope everyone is having a wonderful day!
Be Well
Johnny :)
I'm not ashamed to show what I look like with the bag. I'm am still confident enough to show myself to the world, and I hope everyone can be just as comfortable. YOU are still YOU, and the way you use the bathroom has no affect on who you are.
Tuesday, July 5, 2016
Day 6
Hello everyone! I'm feeling great! How is everyone else feeling on this lovely summer day?
I'm really getting used to this olestmy bag. Obviously, it's not how I prefer to live life, and I know in a few months I will be having the reversal surgery, but this beats running to the bathroom, and constantly needing to know where the nearest bathroom is. Some habits I know I've picked up are a little annoying, though. Maybe it's just my nerves kicking in?; not sure. I am constantly checking the bag, making sure there is nothing wrong with it. Another thing I've noticed is that I constantly want to make sure its empty. When it does have anything in it, it becomes a bit heavy and uncomfortable. I prefer I have it empty, especially because the bag can be seen under my shirt when its not. I really need to go shopping.
I've been eating well, trying not to malnourish myself. I try to refrain from snacking. I also make sure I drink plenty of fluids. I keep a gallon of water next to my bed at all times. I've definitely noticed that what I eat and drink has an affect on the stool found in my bag. I had a red Gatorade, and a few hours later, the whole bag was an interesting red color. I emptied it out, and sure enough, the stool went back to normal. So if you notice anything yourself, don't be alarmed. Try to stay away from red liquids like that, otherwise you might scare yourself. I was panicking the whole time, wondering of anything was wrong haha.
I think tomorrow morning will be the first time I change the bag myself. I'm a little nervous to be completely honest, but I know with some patience I can do it.
During the Fourth of July, I actually tried to indulge a little bit. I had pasta, and a cheeseburger. Everything checked out normal for the most part. Personally, I don't like the thickness of the stool, so I've been trying to drink more and eat less.
The pain medication I was prescribed makes me extremely tired. I try not to take them before I drive anywhere. They usually put me in a nice nap for about an hour. It kind of sucks, because I'd rather live my life, rather than be constantly tired. I try to refrain from taking them, but unfortunately, the pain can be too much sometimes.
I'm still having problems figuring out the right showering method. If anyone has any tips, I'd love to listen. I would like to get as many uses as possible out of the bag, and I know that showering can shorten the life span of them. I haven't gotten the water proof bags yet, so I'm looking forward to them.
What I realized throughout this short time is that I have an amazing support group. My family has been supporting me 100%, and helping me with everything. It actually might be bringing my family closer, because everyone is always trying to keep in touch. It honestly amazes me how wonderful of a family I have. I would like to give a huge thank you to my family for all their love. Without them, I wouldn't be able to handle this. Someone else I want to show my love for is my amazing girlfriend, Crystal. She knows how to keep me going, and brighten every last day. She keeps me moving forward. She also approved the nick name I gave my stoma, Strawberry,
I hope everyone had an amazing Fourth of July. Have a wonderful day everybody.
Be Well
Johnny
I'm really getting used to this olestmy bag. Obviously, it's not how I prefer to live life, and I know in a few months I will be having the reversal surgery, but this beats running to the bathroom, and constantly needing to know where the nearest bathroom is. Some habits I know I've picked up are a little annoying, though. Maybe it's just my nerves kicking in?; not sure. I am constantly checking the bag, making sure there is nothing wrong with it. Another thing I've noticed is that I constantly want to make sure its empty. When it does have anything in it, it becomes a bit heavy and uncomfortable. I prefer I have it empty, especially because the bag can be seen under my shirt when its not. I really need to go shopping.
I've been eating well, trying not to malnourish myself. I try to refrain from snacking. I also make sure I drink plenty of fluids. I keep a gallon of water next to my bed at all times. I've definitely noticed that what I eat and drink has an affect on the stool found in my bag. I had a red Gatorade, and a few hours later, the whole bag was an interesting red color. I emptied it out, and sure enough, the stool went back to normal. So if you notice anything yourself, don't be alarmed. Try to stay away from red liquids like that, otherwise you might scare yourself. I was panicking the whole time, wondering of anything was wrong haha.
I think tomorrow morning will be the first time I change the bag myself. I'm a little nervous to be completely honest, but I know with some patience I can do it.
During the Fourth of July, I actually tried to indulge a little bit. I had pasta, and a cheeseburger. Everything checked out normal for the most part. Personally, I don't like the thickness of the stool, so I've been trying to drink more and eat less.
The pain medication I was prescribed makes me extremely tired. I try not to take them before I drive anywhere. They usually put me in a nice nap for about an hour. It kind of sucks, because I'd rather live my life, rather than be constantly tired. I try to refrain from taking them, but unfortunately, the pain can be too much sometimes.
I'm still having problems figuring out the right showering method. If anyone has any tips, I'd love to listen. I would like to get as many uses as possible out of the bag, and I know that showering can shorten the life span of them. I haven't gotten the water proof bags yet, so I'm looking forward to them.
What I realized throughout this short time is that I have an amazing support group. My family has been supporting me 100%, and helping me with everything. It actually might be bringing my family closer, because everyone is always trying to keep in touch. It honestly amazes me how wonderful of a family I have. I would like to give a huge thank you to my family for all their love. Without them, I wouldn't be able to handle this. Someone else I want to show my love for is my amazing girlfriend, Crystal. She knows how to keep me going, and brighten every last day. She keeps me moving forward. She also approved the nick name I gave my stoma, Strawberry,
I hope everyone had an amazing Fourth of July. Have a wonderful day everybody.
Be Well
Johnny
Saturday, July 2, 2016
Day 3
I'm officially back home! It's a wonderful feeling, but now the challenge is up to me. I've been taught how to change my ostomy bag, as well as empty it. It's honestly not too difficult, just gotta pay attention. Here are some helpful tips when changing, at least from a mans standpoint. When changing, even in a public place, you may want to sit towards the back of the toilet, rather than standing up. It's much easier to empty the bag and keep yourself from getting ant of your own waste on you. You may also want to line toilet paper on the water. This will prevent any nasty splash back, and also will help with not leaving any embarrassing stains in the toilet; especially when emptying in a friends house.
Watching what you eat will be crucial after surgery. There will be foods that produce more stool than others. This varies on the person. I haven't experienced many foods yet, but as I experience them, I will share them with everyone. Personally, I've been eating a lot of crackers. This morning for breakfast, the hospital gave me really dry pancakes, with some syrup. These didn't too much harm.
Your stool will be a lot thicker after being allowed to eat food again, rather than the extremely liquidy stool it was before. I've also noticed that sometimes, the food doesn't digest or break apart completely. I've noticed little bits of chicken, from the foods I had yesterday. Don't be alarmed, it will happen. Chewing food more thoroughly is also important and useful.
I was discharged from the hospital with a few medicines that I will need to take. I am still on prednisone, but weening off, thank goodness. I also have to give myself shots, these are so I don't get blood clots. I also need to take antibiotics and pain medication.
Doctor wants me to keep active, and walk more. I need to lose about 15 more pounds. This will be good for me and my personal health. I have a small, painful cough, I think its only painful because of the surgery.
I'm happy to be home, and I'm enjoying the Germany-Italy match with my dad now. I will continue to keep everyone updated.
Be well
Johnny.
Friday, July 1, 2016
Day 2
Today marks the second day with my ileostomy Bag. I'm quickly beginning to learn how to use one, even though it's only been a part of me for a few days. I'm still in a small amount of pain, but the pain is coming from the the surgery. I have about five different small openings, that were closed using a type of medical glue, rather than stitches. The bag I am currently using fills up with waste quickly, but it's easy to drain.
I have just been cleared to eat real food for the first time since Sunday. This morning for breakfast, I was given a beef broth. It wasn't very good, so I didn't eat much. For lunch, I will be having a small portion of chicken parmesan, with pasta. They will also be throwing in an Italian ice, which should be enjoyable. For dinner, I will be having roast chicken with string beans and mashed potatoes. Hopefully these meals will be delicious. My parents also brought me Carr's Table Water Crackers. They are very plain, but you shouldn't be eating anything too crazy after surgery. Your body is still getting used to the new ileostomy bag, and eating too much may cause pain or vomiting. Even though its hospital food, it will be the first food I've had in a week. I will go more into the foods that are okay to eat in a later post.
It took awhile for me to gain the ability to urinate on my own again. After surgery, I had a catheter attached to my Penis. This was quite unpleasant, and I actually didn't know I was going to have this until minutes before the surgery. They removed it yesterday afternoon, and it took me about a day to release urine on my own again. They told me that if I was unable to urinate on my own, that they would need to reattach the catheter. I think that scared me into urinating. It was a great feeling to urinate on my own again, and a large pain in my stomach went away. TIP: If you get surgery, do not drink too much until you are able to urinate on your own again. If you are unable to urinate, you will get very backed up, cause large amounts of pain in your stomach, and ultimately end up vomiting. It is very unpleasant, and you may end up causing damage to your body.
My stoma has been releasing a lot of gas, which is a very good thing. It also has been producing a healthy amount of waste. I would say that I have a nurse emptying it about every four hours maybe. It can be kind of uncomfortable when there is a lot of waste sitting in the bag. The bag I am currently using is a hospital bag, so I assume that when I buy my own bags, that they will be more comfortable.
As stated in my last post, I have been looking at some cool products. I will link them here.
Ostomybagholder.com
Sensura Mio bags
Be Well
Johnny.
I have just been cleared to eat real food for the first time since Sunday. This morning for breakfast, I was given a beef broth. It wasn't very good, so I didn't eat much. For lunch, I will be having a small portion of chicken parmesan, with pasta. They will also be throwing in an Italian ice, which should be enjoyable. For dinner, I will be having roast chicken with string beans and mashed potatoes. Hopefully these meals will be delicious. My parents also brought me Carr's Table Water Crackers. They are very plain, but you shouldn't be eating anything too crazy after surgery. Your body is still getting used to the new ileostomy bag, and eating too much may cause pain or vomiting. Even though its hospital food, it will be the first food I've had in a week. I will go more into the foods that are okay to eat in a later post.
It took awhile for me to gain the ability to urinate on my own again. After surgery, I had a catheter attached to my Penis. This was quite unpleasant, and I actually didn't know I was going to have this until minutes before the surgery. They removed it yesterday afternoon, and it took me about a day to release urine on my own again. They told me that if I was unable to urinate on my own, that they would need to reattach the catheter. I think that scared me into urinating. It was a great feeling to urinate on my own again, and a large pain in my stomach went away. TIP: If you get surgery, do not drink too much until you are able to urinate on your own again. If you are unable to urinate, you will get very backed up, cause large amounts of pain in your stomach, and ultimately end up vomiting. It is very unpleasant, and you may end up causing damage to your body.
My stoma has been releasing a lot of gas, which is a very good thing. It also has been producing a healthy amount of waste. I would say that I have a nurse emptying it about every four hours maybe. It can be kind of uncomfortable when there is a lot of waste sitting in the bag. The bag I am currently using is a hospital bag, so I assume that when I buy my own bags, that they will be more comfortable.
As stated in my last post, I have been looking at some cool products. I will link them here.
Ostomybagholder.com
Sensura Mio bags
Be Well
Johnny.
Thursday, June 30, 2016
Day 1
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
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
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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