I've been struggling to put these words down on paper. Struggling to get them just right, just perfect, just exact enough to tell a story that you will want to read. With the way my ADHD brain jumps from idea to idea at speeds that make warp speed seem like standing still, combined with my awesome perfectionism (I've mastered the art of feeling the need to be perfect) and my dyslexia, putting words to paper can sometimes be a very slow go. Especially when it's a part of my life that I don't normally share. And especially as talking about all of this brings a flow of tears. This is a post about life on the Dark Side.
Anyone who follows my blog knows that I don't normally share the darker side of my feelings. Why? One easy answer: I care what people think. I want to inspire others. I want to be uplifting. I want to help others see that there is hope, that there is light, at the end of the tunnel. Then I got to thinking about the reasons I blog in the first place; to help other people. Sharing our stories is a way of connecting to others, a way of saying "Hey, you're not alone, look at my story". Our stories, good and bad, are part of our journey and people need to see the good, the bad and the ugly. Life isn't all unicorns and leprechauns. Real life has the good and the bad with it, and sometimes the bad does feel like it overpowers the good.
In another month, I will celebrate an anniversary. It will have been 4 years since the onset of my Crohn's Disease symptoms. In two weeks, I'm going for my 16th trip to the Operating Room. Until that time, I'm trying to avoid my 8th major hospitalization. I can't even tell you the number of pokes, painful tests, painful procedures like rectal ultrasounds and painful treatments that I've had to live through. That seems like a lot but in reality, that's just the physical stuff I have to go through daily. There's also a lot of emotional stuff that goes on in the background.
In 4 years of treatments, I haven't caught a break. I haven't felt any major improvements no matter what combination of drugs the "team" throws at me. In fact, since November I would say that I have physically felt even worse than I did when I was so sick that I needed my bowel out. I have been living every day in constant tear-inducing pain, unable to get quality sleep, having severe problems with nausea and vomiting (I feel like I should carry a bucket with me everywhere I go for emergencies), and oh yeah, did I mention the pain?! Every week brings a new health challenge, and it's hard to know when, or if, it will stop. I get people saying "if it were that serious you'd be in the hospital" or "you must be feeling better since you've been to the doctor". Unfortunately, it doesn't work like that in healthcare. When you are a chronic patient, you get stabilized at the hospital and once things are stable, even if they are stable on the horrible side, you are released and wait for the next step on your medical plan. Going to the doctor doesn't always make things immediately better.
I've been to see at least 1 doctor every week for so long that I can't remember a week without a doctor's appointment. Every time I see a doctor, I hope beyond hope that this will be the visit that will change everything. I hope for relief, for some type of improvement. I hope to be able to describe perfectly what is going on with my body. I hope for the doctor's to listen and believe me, and to be patient with me when I break down into tears as I'm talking simply because it's overwhelming to talk about every single little problem all at once. I know that my confusing, complex health problems are overwhelming for health care professionals, but they're also overwhelming for me to live with daily.
I know I'm going to live with Crohn's Disease for the rest of my life. There is no current cure for it (and yes, I've tried different diets, supplements, medications, meditations...). I know that I should say that "I haven't let it control my life", but to be honest with you, it sortof does control my life right now. I'm not sure how it couldn't. I've had to give up being a Scout, as it's hard to go out and do physical activity like rowing a canoe, or going on an hours long hike, when it takes all of your energy just to get out of bed. I haven't really been to school yet this year. I can't go into the classroom and throw-up on my classmates, and I fear my tears and yelps in pain would only distract my friends. I've been away from school for so long (most of the last 2 years) that I don't really have any "normal" friendships. My life has become a series of waiting rooms, and waiting for waiting rooms. And waiting for treatments to work, or more accurately, waiting to find a treatment that does work.
Welcome to my Dark Side.
It's heavy. It's crushing at times. I ask "why?", I ask "what's the point?". I get angry, frustrated, and exhausted. I cry. Nobody wants a dark side, and it's not something that we just go up to a stranger and start talking about. It's definitely not a conversation starter. In fact, most people get uncomfortable when you even come close to talking about the negative side of chronic disease. The socially acceptable answer to "How are you today?" is definitely not "Horrible, thanks, and you?". Yet that is the honest response. Some days I really don't have much to say that is positive, other than "I'm alive, breathing and with a heart beating". And that truth makes a lot of people uncomfortable. I don't mean to be negative, I just mean to be real. It's always okay to be the real you, and real people have real problems.
How do I combat the Dark Side? Purpose and Belief. There has to be some point to it all. I believe that all of my experiences have had to happen for a greater reason, that there has been a purpose behind the suffering. Jacob's Healing Rooms fundraising project gives me purpose. It lets me take the ugliest of situations, the worst nightmares, the stuff that the Dark Side is made of, and make something beautiful come from it. It's a symbol of my Light Side doing battle against the forces of evil. Doing something to help improve other people's lives is my way of taking back a little sliver of my life. Every positive word someone shares with me, lets me know that what I'm doing is making a difference. In turn, that makes my Light Side glow a bit brighter. That keeps me motivated to keep doing what I'm doing. It's one of the better cycles that I like getting stuck in. The Dark Side might be scary, but it's not the whole picture when it comes to who I am. It's simply a part of me that reminds me of where I come from. It reminds me of the mountains that I've already climbed, and that my scars are symbols of battle wounds. My Dark Side makes my Light Side all that much more brighter.
Showing posts with label depression. Show all posts
Showing posts with label depression. Show all posts
Monday, May 2, 2016
Wednesday, January 27, 2016
Mental Health and Chronic Illness
It's #BellLetsTalk day about mental health, and I've already posted about my experience with depression but I wanted to share more about how my physical health also has a huge impact on me and how I want to make this easier for other kids like me.
It's been almost 4 years since I had my first onset of a Crohns Disease flare. In reality, I'm still on that "first" onset since I've yet to achieve remission status. In 4 years I went from being an active kid who was always wanting to be on the go somewhere, to someone who rarely feels they have the energy to leave the house (at least much of the time). My entire life has changed. I can no longer participate in Scouting activities that I really enjoyed, I rarely have contact with my school friends since I've been too sick to go. I haven't had a birthday party in 3 years, and since I'm not at school, I rarely get invited out with friends. I've spent many of the past 2 years worth of holidays at the hospital. Over such a short time, my life has turned upside-down.
I'm completely aware of my medical situation. I know that I've exhausted my medical options for the moment and that how I'm feeling right now might be as good as it gets. I get angry at the disease, at what it's taken from me, and the treatments that I have go through because of it. I've had tears adjusting to living with tubes and bags hanging off of me. I've asked "Why me?" and go through periods of being jealous of my other "normal" friends at school who are living "normal" lives. I will never live a "normal" life in the sense that most people would consider normal. I've had to accept that my normal involves machines, blenderized meals, and medical equipment like my dancing IV pole partner.
I knew that I couldn't let this disease define me, that I needed to take all the negative that had been thrown at me and create something beautiful from it. When I first walked into the outpatient treatment rooms at the hospital for my first Remicade IV treatment (often an 8 hour day), I was scared and worried that this treatment too would fail. I remember walking into the room and being completely shocked at the emptiness, the lack of color or interesting distractions. I felt like I was walking into more of adult clinic instead of a major children's treatment facility. It was depressing. You felt a heaviness just walking through those doors. Let's face it, medical stuff is scary. As a child when you are looking at the thought of having to do these treatments regularly, it can be downright terrifying.
I decided to do something about this. I know from my time in other parts of the hospital, that having a supportive and engaging environment can make a huge difference in the physical healing and mental health of patients. I decided that the environment for the outpatient treatment rooms needed to change to help give a boost to kids' spirits and help to encourage healing. Jacob's Healing Rooms is going to help update the treatments rooms to make them child-friendly places of healing. I'm going to install tablets at each treatment chair, have the walls painted, distracting sky-panel covers for the lights and a sensory bubble tube machine in each room to distract and liven up the environment. I may not be able to make the disease go away, but I can help to make a difference in the lives of other sick children needing these treatments too. And in turn, that makes me feel like I'm making a difference, that I'm needed.
Today might be #BellLetsTalk day but let's not forget that the struggle that people living with mental health and chronic illness face is very real each and every day.
It's been almost 4 years since I had my first onset of a Crohns Disease flare. In reality, I'm still on that "first" onset since I've yet to achieve remission status. In 4 years I went from being an active kid who was always wanting to be on the go somewhere, to someone who rarely feels they have the energy to leave the house (at least much of the time). My entire life has changed. I can no longer participate in Scouting activities that I really enjoyed, I rarely have contact with my school friends since I've been too sick to go. I haven't had a birthday party in 3 years, and since I'm not at school, I rarely get invited out with friends. I've spent many of the past 2 years worth of holidays at the hospital. Over such a short time, my life has turned upside-down.
I'm completely aware of my medical situation. I know that I've exhausted my medical options for the moment and that how I'm feeling right now might be as good as it gets. I get angry at the disease, at what it's taken from me, and the treatments that I have go through because of it. I've had tears adjusting to living with tubes and bags hanging off of me. I've asked "Why me?" and go through periods of being jealous of my other "normal" friends at school who are living "normal" lives. I will never live a "normal" life in the sense that most people would consider normal. I've had to accept that my normal involves machines, blenderized meals, and medical equipment like my dancing IV pole partner.
I knew that I couldn't let this disease define me, that I needed to take all the negative that had been thrown at me and create something beautiful from it. When I first walked into the outpatient treatment rooms at the hospital for my first Remicade IV treatment (often an 8 hour day), I was scared and worried that this treatment too would fail. I remember walking into the room and being completely shocked at the emptiness, the lack of color or interesting distractions. I felt like I was walking into more of adult clinic instead of a major children's treatment facility. It was depressing. You felt a heaviness just walking through those doors. Let's face it, medical stuff is scary. As a child when you are looking at the thought of having to do these treatments regularly, it can be downright terrifying.
I decided to do something about this. I know from my time in other parts of the hospital, that having a supportive and engaging environment can make a huge difference in the physical healing and mental health of patients. I decided that the environment for the outpatient treatment rooms needed to change to help give a boost to kids' spirits and help to encourage healing. Jacob's Healing Rooms is going to help update the treatments rooms to make them child-friendly places of healing. I'm going to install tablets at each treatment chair, have the walls painted, distracting sky-panel covers for the lights and a sensory bubble tube machine in each room to distract and liven up the environment. I may not be able to make the disease go away, but I can help to make a difference in the lives of other sick children needing these treatments too. And in turn, that makes me feel like I'm making a difference, that I'm needed.
Today might be #BellLetsTalk day but let's not forget that the struggle that people living with mental health and chronic illness face is very real each and every day.
Mental Health and Me
Today is #BellLetsTalk day, a day to become more aware of the mental health issues people live with every day and how we as a society can make it better. In honor of today, I'm going to post about a very difficult time that I struggled through which is still very difficult for me to talk about.
I am a survivor. At the age of 7-8, I felt like I wanted to die. A person close to me in my life in a position of trust who was supposed to love and care for me, didn't. Every time I did something wrong, I'd be left wondering "What's wrong with me? What more can I do to make them happy?". I began to see, or at least really believed, that I was to blame. I felt like there was something unlovable about me and I felt worthless. I felt like I had nothing of value to say or to contribute. I couldn't make a choice because I'd have to stop and analyze the "consequences" of each choice, whether it could possibly get me into any more trouble. I began to feel so paralyzed by wanting to make others happy and avoiding making any mistakes so that things wouldn't get any worse. I felt that if I were "perfect" that I could make others love me and that by being perfect it was the only way that people would ever possibly even like me. I was lonely, miserable and felt that if I wasn't here on Earth it wouldn't even matter.
It's been a long road back. The problem with mental health "problems" is that they're often complicated to treat and recovery takes time. There's no magic pill out there that's going to make me forget what it felt like to go through this. Reaching out to others, finding "spirit lifters" and focusing on getting to know who I am again have been the biggest key factors in my recovery. Despite the bullying at school that I continued to experience for a year or so after this, I slowly started to see that I had a choice to make: I could either let this experience define me negatively and either give up or turn into a bully myself, or I could use the experience as an example of what not to be. I figure I have a long life ahead of me, so I chose the positive choice.
Since this time, I've also been diagnosed with Post-Traumatic Stress Disorder. Yes, even a child can have PTSD. I can't handle negative confrontations really well without having a flashback. So sometimes when I'm playing multi-player online games and someone starts saying something bad to me, it can trigger the memories. I still feel this need to make my work perfect, but I'm also learning that mistakes are also learning experiences. And, most importantly, I no longer wake up dreading being alive each day. I know that I matter, I make a difference. I know that I'm here for a purpose; to be a change maker.
What would I say to another young person living with depression and thinking about death as an escape? Hold on and don't give up. Right now might be a really dark time, but even though you can't see it there is hope out there. There are kind people out there that are just waiting to meet you. Even when you feel that there is absolutely no one, it's not true; I care. I want you here on Earth because you can make a difference in someone else's life, you can share your story of survival.
I am a survivor. At the age of 7-8, I felt like I wanted to die. A person close to me in my life in a position of trust who was supposed to love and care for me, didn't. Every time I did something wrong, I'd be left wondering "What's wrong with me? What more can I do to make them happy?". I began to see, or at least really believed, that I was to blame. I felt like there was something unlovable about me and I felt worthless. I felt like I had nothing of value to say or to contribute. I couldn't make a choice because I'd have to stop and analyze the "consequences" of each choice, whether it could possibly get me into any more trouble. I began to feel so paralyzed by wanting to make others happy and avoiding making any mistakes so that things wouldn't get any worse. I felt that if I were "perfect" that I could make others love me and that by being perfect it was the only way that people would ever possibly even like me. I was lonely, miserable and felt that if I wasn't here on Earth it wouldn't even matter.
It's been a long road back. The problem with mental health "problems" is that they're often complicated to treat and recovery takes time. There's no magic pill out there that's going to make me forget what it felt like to go through this. Reaching out to others, finding "spirit lifters" and focusing on getting to know who I am again have been the biggest key factors in my recovery. Despite the bullying at school that I continued to experience for a year or so after this, I slowly started to see that I had a choice to make: I could either let this experience define me negatively and either give up or turn into a bully myself, or I could use the experience as an example of what not to be. I figure I have a long life ahead of me, so I chose the positive choice.
Since this time, I've also been diagnosed with Post-Traumatic Stress Disorder. Yes, even a child can have PTSD. I can't handle negative confrontations really well without having a flashback. So sometimes when I'm playing multi-player online games and someone starts saying something bad to me, it can trigger the memories. I still feel this need to make my work perfect, but I'm also learning that mistakes are also learning experiences. And, most importantly, I no longer wake up dreading being alive each day. I know that I matter, I make a difference. I know that I'm here for a purpose; to be a change maker.
What would I say to another young person living with depression and thinking about death as an escape? Hold on and don't give up. Right now might be a really dark time, but even though you can't see it there is hope out there. There are kind people out there that are just waiting to meet you. Even when you feel that there is absolutely no one, it's not true; I care. I want you here on Earth because you can make a difference in someone else's life, you can share your story of survival.
Tuesday, October 20, 2015
A Letter to the Bullied Child
Today's Bystander Revolution challenge was issued by Melissa Joan Hart - to talk to someone younger about bullying, and give them some suggestions on how to deal with it. I'm going to do an announcement at school, but I also have a message to share with my past self, with the hopes that it might help someone else who is being bullied right now.
Dear Self of the Past,
It's me, your future. I see the pain that you are in right now. I see your fears of what the next day at school is going to be like, and wondering how much worse it's going to get. I can understand how you might feel that the whole world is against you, and that the weight of the world is sitting on you. I see the happiness that you once shared with everyone slowly being replaced by sadness and tears. I hear your thoughts of "please just let me invisible". I even see your deepest fear of not being good enough, not being worth it.
I'm sorry that you're living this, that you're experiencing the worst that people have to offer. I want you to know that you don't have to worry about taking the risk to meet new people, not everyone will be mean. You can take a chance and come out of your shell. There are some awesome people out there that you will meet, and you'll start to see that kindness overpowers bullying every single time. Even when you feel like no one is in your corner, there are complete strangers out there who care and are sending you nothing but the best of wishes.
I want you to know that you don't have to stay silent. You've been told that you have nothing of value to say, but I can tell you that your words matter. They will matter a lot in the future. Your bullies have tried to squash your voice like a steamroller. It's not because you're "stupid", or "a moron", or any other names they want to call you, it's because they just can't understand your fantastic ideas. It takes power to use your voice, and I know that you have that power in you. Don't be afraid to let it out and never let someone else tell you that your voice doesn't matter. It really does. You will go on to use your voice for great things. Don't be afraid to ask for help, it comes from the most unexpected places.
I want you to know that you are worth it. You are someone that matters, we all matter. You're worth someone taking the time to get to know. Very soon you are going to make some plans that you hope are going to change people's lives. You're going to help so many people with your experiences, both of bullying and living with a severe chronic disease. I know right now you feel absolutely powerless to the point of tears, but it's not always going to be that way.
I want you to know that you're going to learn soon about the person you want to become in the future. You're going to take your ugly experiences and make something beautiful from it. You feel the pain of bullying and you will remind yourself that this is the exact type of person you don't want to be, and you take action to do the exact opposite. You're going to learn that our days here on earth can be very short, so you will take action to change the world for the better. Your actions will be filled with compassion and you will practice kindness because you know that life could end at any time and you want to make a difference before that happens.
I want you know that it's ok to be different. You don't have to be ashamed of being gifted, of finding schoolwork way too easy that you're looking at university lectures online. You come up with some amazing science ideas that are way beyond the level of most kids your age. It's ok, you're going to see that there are other kids like you, and you're going to meet a lot of university kids volunteering at the hospital to be able to share your ideas with. Different is good. If no one "thought outside the box" then we wouldn't come up with solutions to problems. It's also ok to look different. Your medical problems will make you appear different, you will have tubes taped to your face from time-to-time and you'll wear a colostomy bag for life. You will need to go on and off steroids which will cause serious weight gain, as will some of the side effects of the medications. At first the kids will be mean as they don't understand what you're going through, but one day you're going to find that the majority of them are cheering you on with your journey. You will go on to inspire them, you just need to get through some rough patches.
Most of all, I want you to follow your dreams and never believe anyone who tells you that you can't. Make every day about proving that you can, and remembering that even the greatest of challenges can be overcome. Remember that every small step counts, and that even a single person has the power to make a big difference.
Smile and breathe. It's going to be alright.
Dear Self of the Past,
It's me, your future. I see the pain that you are in right now. I see your fears of what the next day at school is going to be like, and wondering how much worse it's going to get. I can understand how you might feel that the whole world is against you, and that the weight of the world is sitting on you. I see the happiness that you once shared with everyone slowly being replaced by sadness and tears. I hear your thoughts of "please just let me invisible". I even see your deepest fear of not being good enough, not being worth it.
I'm sorry that you're living this, that you're experiencing the worst that people have to offer. I want you to know that you don't have to worry about taking the risk to meet new people, not everyone will be mean. You can take a chance and come out of your shell. There are some awesome people out there that you will meet, and you'll start to see that kindness overpowers bullying every single time. Even when you feel like no one is in your corner, there are complete strangers out there who care and are sending you nothing but the best of wishes.
I want you to know that you don't have to stay silent. You've been told that you have nothing of value to say, but I can tell you that your words matter. They will matter a lot in the future. Your bullies have tried to squash your voice like a steamroller. It's not because you're "stupid", or "a moron", or any other names they want to call you, it's because they just can't understand your fantastic ideas. It takes power to use your voice, and I know that you have that power in you. Don't be afraid to let it out and never let someone else tell you that your voice doesn't matter. It really does. You will go on to use your voice for great things. Don't be afraid to ask for help, it comes from the most unexpected places.
I want you to know that you are worth it. You are someone that matters, we all matter. You're worth someone taking the time to get to know. Very soon you are going to make some plans that you hope are going to change people's lives. You're going to help so many people with your experiences, both of bullying and living with a severe chronic disease. I know right now you feel absolutely powerless to the point of tears, but it's not always going to be that way.
I want you to know that you're going to learn soon about the person you want to become in the future. You're going to take your ugly experiences and make something beautiful from it. You feel the pain of bullying and you will remind yourself that this is the exact type of person you don't want to be, and you take action to do the exact opposite. You're going to learn that our days here on earth can be very short, so you will take action to change the world for the better. Your actions will be filled with compassion and you will practice kindness because you know that life could end at any time and you want to make a difference before that happens.
I want you know that it's ok to be different. You don't have to be ashamed of being gifted, of finding schoolwork way too easy that you're looking at university lectures online. You come up with some amazing science ideas that are way beyond the level of most kids your age. It's ok, you're going to see that there are other kids like you, and you're going to meet a lot of university kids volunteering at the hospital to be able to share your ideas with. Different is good. If no one "thought outside the box" then we wouldn't come up with solutions to problems. It's also ok to look different. Your medical problems will make you appear different, you will have tubes taped to your face from time-to-time and you'll wear a colostomy bag for life. You will need to go on and off steroids which will cause serious weight gain, as will some of the side effects of the medications. At first the kids will be mean as they don't understand what you're going through, but one day you're going to find that the majority of them are cheering you on with your journey. You will go on to inspire them, you just need to get through some rough patches.
Most of all, I want you to follow your dreams and never believe anyone who tells you that you can't. Make every day about proving that you can, and remembering that even the greatest of challenges can be overcome. Remember that every small step counts, and that even a single person has the power to make a big difference.
Smile and breathe. It's going to be alright.
Saturday, September 26, 2015
Todays' Song Pick of the Day (9/26/15): "I Don't Wanna Be Sad" by Simple Plan
Today I bring you a song that I'm pretty sure was written exactly about me and for me, "I Don't Wanna Be Sad" by Simple Plan. Have a listen to this absolutely amazing song and read why I chose it for today's song of the day:
"And I know/Some days will be bad/But I don't wanna be/Sad Sad Sad/No more". I don't want to be sad. It's not who I am. If I let the repeated surgeries, failed treatments, disastrous side effects, months-long hospitalizations get me down, I might not ever get up again. It's been a very difficult week of medical appointments for me. I feel like I'm moving nowhere with getting better, or at least even feeling a bit better, and it feels like those that are supposed to be helping me get back on my feet, are giving up on me instead. I know I'm complicated and that I don't fit into the normal of anything. It's frustrating when all the pills and various therapies that are thrown at me don't work, I get that it forces my helpers to think outside the box. I'm not asking for miracles, I know that Crohn's Disease is forever. I know that I'll live with an ostomy forever. I'm ok with both of those facts. I just want help to feel better and be able to do the things that I love.
"I swear all the tears I've cried/Could fill an ocean". I've shed a lot of tears this week, but today is about letting that go and moving on. I'm going to choose to put a smile on my face, to laugh and say "I Don't Wanna Be Sad". And I certainly don't want other kids to feel sad, so that's why I'm going to take my sadness, my frustration, my worries and I'm going to turn it around to give something beautiful to others to help share a smile. Because when other people are happy, it makes me smile. Please help me fulfill my wish of making Jacob's Healing Rooms become a reality!
"And I know/Some days will be bad/But I don't wanna be/Sad Sad Sad/No more". I don't want to be sad. It's not who I am. If I let the repeated surgeries, failed treatments, disastrous side effects, months-long hospitalizations get me down, I might not ever get up again. It's been a very difficult week of medical appointments for me. I feel like I'm moving nowhere with getting better, or at least even feeling a bit better, and it feels like those that are supposed to be helping me get back on my feet, are giving up on me instead. I know I'm complicated and that I don't fit into the normal of anything. It's frustrating when all the pills and various therapies that are thrown at me don't work, I get that it forces my helpers to think outside the box. I'm not asking for miracles, I know that Crohn's Disease is forever. I know that I'll live with an ostomy forever. I'm ok with both of those facts. I just want help to feel better and be able to do the things that I love.
"I swear all the tears I've cried/Could fill an ocean". I've shed a lot of tears this week, but today is about letting that go and moving on. I'm going to choose to put a smile on my face, to laugh and say "I Don't Wanna Be Sad". And I certainly don't want other kids to feel sad, so that's why I'm going to take my sadness, my frustration, my worries and I'm going to turn it around to give something beautiful to others to help share a smile. Because when other people are happy, it makes me smile. Please help me fulfill my wish of making Jacob's Healing Rooms become a reality!
Tuesday, September 15, 2015
Jacob's Song Of The Day (9/15/2015): "Boulevard of Broken Dreams" by Green Day
Today's song of the day is "Boulevard of Broken Dreams" by Green Day. Have a listen and read why I chose this particular song today:
"I walk a lonely road/The only one that I have ever known/Don't know where it goes/But it's home to me and I walk alone". Inflammatory Bowel Disease (IBD) is a lonely disease. Nobody talks about it. It's not right to discuss what takes place in the bathroom or the stuff that our body does. But if we don't talk about it, how can we raise awareness? How can we push pharmaceutical companies for better treatments? How do we urge researchers to find a cure for this disease? Let's face it, the main symptom of IBD involves the gastro-intestinal tract and it isn't pretty. When I was first diagnosed with this disease back in July 2012, I was VERY sick. I was so sick that the doctors were concerned that I might perforate my colon. We tried everything. At one point I was taking;
a strong dose of prednisone - a steroid.
Remicade - a biological medication used for a variety of autoimmune diseases like Crohn's
Methotrexate - a chemotherapy agent to suppress immune system function
Mesalamine - another medication for inflammatory disorders
Lansoprazole - to help fight against acid production
Zofran - for vomiting
the antibiotics Flagyl and Vancomycin - they work on the gut microbiota and prevent/treat infections
Not that great of a breakfast. It was lonely when treatment after treatment would not help to get me to remission. I saw other kids coming in to hospital after me, getting better and leaving before me. You can easily wonder whether you're ever going to be well enough to go again.
I've pretty much exhausted my treatment options which is an extremely lonely place to be in. The biologics Remicade and Humira are two of the most often used medications when all of the earlier medications have failed. I've tried Remicade twice. The first time, I developed antibodies but the treatment wasn't working anyway. Then I lost my colon. The second time, I developed severe psoriasis that was painful and bleeding to the touch and covered 70-75% of my body. Humira covered my body in bruises to the point where my mom tells me that I looked like I got hit by a car and then run over by a bus. Now I'm on this medication Stelara, another form of a biologic which works on a different receptor in the body from the other biologics. It's been great for my skin, and for awhile we thought it was working for my Crohn's as well (research has been somewhat good on the use of Stelara for Crohn's), but for the past several weeks I've noticed more symptoms coming up again. I will be scheduled for another colonoscopy and endoscopy soon where we will look at how much it has or hasn't helped. If I am deemed to have "failed" this treatment... there's not too much left out there available to me. In fact, the only thing left might be applying to the government for special access to a medication called Entyvio which is being used with some success in the US. The medication is available to adults in Canada just not pediatrics.
Jacob's Healing Rooms is a place for kids to feel less alone, less "down", while they are receiving their IV treatments. It's a place of hope, encouragement and dreams. It's a place of love. Please support Jacob's Healing Rooms and help brighten the lives of other sick children.
"I walk a lonely road/The only one that I have ever known/Don't know where it goes/But it's home to me and I walk alone". Inflammatory Bowel Disease (IBD) is a lonely disease. Nobody talks about it. It's not right to discuss what takes place in the bathroom or the stuff that our body does. But if we don't talk about it, how can we raise awareness? How can we push pharmaceutical companies for better treatments? How do we urge researchers to find a cure for this disease? Let's face it, the main symptom of IBD involves the gastro-intestinal tract and it isn't pretty. When I was first diagnosed with this disease back in July 2012, I was VERY sick. I was so sick that the doctors were concerned that I might perforate my colon. We tried everything. At one point I was taking;
a strong dose of prednisone - a steroid.
Remicade - a biological medication used for a variety of autoimmune diseases like Crohn's
Methotrexate - a chemotherapy agent to suppress immune system function
Mesalamine - another medication for inflammatory disorders
Lansoprazole - to help fight against acid production
Zofran - for vomiting
the antibiotics Flagyl and Vancomycin - they work on the gut microbiota and prevent/treat infections
Not that great of a breakfast. It was lonely when treatment after treatment would not help to get me to remission. I saw other kids coming in to hospital after me, getting better and leaving before me. You can easily wonder whether you're ever going to be well enough to go again.
I've pretty much exhausted my treatment options which is an extremely lonely place to be in. The biologics Remicade and Humira are two of the most often used medications when all of the earlier medications have failed. I've tried Remicade twice. The first time, I developed antibodies but the treatment wasn't working anyway. Then I lost my colon. The second time, I developed severe psoriasis that was painful and bleeding to the touch and covered 70-75% of my body. Humira covered my body in bruises to the point where my mom tells me that I looked like I got hit by a car and then run over by a bus. Now I'm on this medication Stelara, another form of a biologic which works on a different receptor in the body from the other biologics. It's been great for my skin, and for awhile we thought it was working for my Crohn's as well (research has been somewhat good on the use of Stelara for Crohn's), but for the past several weeks I've noticed more symptoms coming up again. I will be scheduled for another colonoscopy and endoscopy soon where we will look at how much it has or hasn't helped. If I am deemed to have "failed" this treatment... there's not too much left out there available to me. In fact, the only thing left might be applying to the government for special access to a medication called Entyvio which is being used with some success in the US. The medication is available to adults in Canada just not pediatrics.
Jacob's Healing Rooms is a place for kids to feel less alone, less "down", while they are receiving their IV treatments. It's a place of hope, encouragement and dreams. It's a place of love. Please support Jacob's Healing Rooms and help brighten the lives of other sick children.
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