Jacob's Song of the Day (2/22/2016): "Stressed Out" by Twenty-One Pilots

The title says it all. Have a listen and read why I chose Stressed Out by Twenty-One Pilots as my song of the day:

"I wish we could turn back time/To the good ol' days..." . I need a good day. Desperately. I wish that they were for sale in the stores, because I'd be first in line. Since diagnosis of Crohn's Disease almost 4 years ago, I don't even remember what a good day is like. Normally I'm pretty good at taking it all one moment at a time, I've even accepted that I'm going to live with this disease and it's complications for the rest of my life. But for the past week, I've been feeling stressed out, for sure.

It started 2 weeks ago when my medical team decided that they needed to check my feeding tube for infection because of the blistering and rash that I was having. It came back that I was positive for "gram-positive cocci", or in terms that others understand, a bacterial infection. I took my antibiotics faithfully for 5 days, and it was looking better but not all the way better. So we had contacted the medical team and sent them pictures but they didn't feel that taking more cultures was necessary. Two days later, the rash came back worse than ever. We sent more pictures but the medical team felt that it wasn't an infection, but said that we should use Benadryl (which I'm allergic to) for the crazy itchiness that was now spreading across my Buddha-belly. Fast forward to the weekend and my entire belly is now covered with a raised rash and my feeding tube site is a complete mess.

For anyone, having an infection isn't nice. But when you are on a medication that can suppress your immune system and make it harder to fight infections, it can be a scary situation. I have a 5cm long tunnel leading into my stomach and an infection in there... just isn't a good idea. The medical team still doesn't think it looks infected, but they did agree to see me in person tomorrow to try to help me get some relief. Because in the end, that's all I want, some relief. A break in the clouds.

A New Battle Begins

Flashback - a year ago today it became clear to the doctors that food was not being my friend. I was having a lot of problems with vomiting and nausea (and still am) and my weight had dropped back down to only 58lbs. I was so tiny, my mom would say that they wouldn't need an xray to tell if I broke a bone. My medical team decided that I needed to have an NG tube inserted through my nose and into my stomach to get all of my nutrition. For the 4 months that followed, I was only allowed clear fluids to go along with my NG feeding formula. I never thought that giving up food would be so hard, but after awhile you just want to eat something solid again, no matter how bad you know it's going to make you feel. I think it's just a natural part of our instinct to want to have solid food. But food and I have a difficult relationship.

I have certain foods that are often triggers for my anxiety, which doesn't help with my menu selections. Then when we factor in what the Inflammatory Bowel Disease doesn't let me eat (anything leafy, stringy, acidic, etc) my menu choices get even more limited. But part of the problem is also that I've been having so much nausea and vomiting that even the thought of eating turns me completely off most of the time.

So how did my weight become what the doctors are now calling a "medical emergency" for weighing too much? That's the million dollar question that everyone keeps asking. Last June, when I hit 80lbs after the first 4 months of formula feeding, we had asked the doctor about weight but were told not to worry, that everything would balance itself out. But my weight kept climbing. I was gaining on average 4kg a month, which is amazing when you factor in that I wasn't eating enough solid food to keep a bird alive. Up, up, up my weight went. I went from wearing a boy's size 8 to now wearing a men's size small/medium. Everything came to a climax last week when the doctors saw that I was weighing in at 125.5lbs, much too much for a child my age. And it's a complete mystery how I managed to gain this much weight. My mom and I have been strictly calorie counting for several weeks and on average I'm having 700 calories a day, most days less than that.

So the doctors are now running more endocrine function tests to see if there is a physical explanation as to what is going on, and in the meantime I am on a very strict calorie intake plan from the dietitian - I'm allowed 1900 calories a day. Whoa. Wait a minute! I'm only taking in 700 anyway... So I was left completely confused with a calorie limit that exceeds what I currently take in by almost 3 times.

My mom decided to go out and buy me a FitBit Charge HR to better track my calories going in and out, as well as my heart rate and sleep so that we could have accurate records to show the doctor. So far it tells me that to lose the 40bs, I should be eating about 2100 calories a day based upon my heart rate and activity levels. And I'm still coming in at the most 900 calories.

The challenge now is to develop a new relationship with food. I've been trying out different recipes, trying to expand my menu. So far I've learned that I love mango chicken curry, and would rather eat dirt than my mom's Kung Pao Chicken. I wish I had a video clip of my expression trying that dish that night, it would have for sure went viral. I'm sure that with my mom learning to cook, that there will be plenty more opportunities to create some hilarious "Jacob tries..." videos!

The 'R' Word & Me: Remission

Remission. Just saying the word completely stuns me and leaves me wordless. I recently heard this word referring to my health status and I want to write a blog post about how I have no idea what to say in response to this word.

Remission has been a dream since the onset of my severe, refractory Crohns Disease 3.5 years ago. We were hoping that the steroids would be enough to kick-start my system back to healthy and get the inflammation under control, then it was the sulfasalazine, the Remicade, the Humira... Each time the doctor would be hopeful, and each time it just wasn't enough, or the right medication. In 3.5 years I haven't caught a break, I've been in what's called a continual state of flare despite the doctor's best attempts to get in under control. And trust me, they threw it all at me, ending up with me often having to take handfuls of pills a few times a day. I guess my disease is just like me, strong and determined. I haven't decided if that's a good thing yet or not.

I think the main problem with me thinking about remission in terms of myself is that I feel no better physically (and that's a whole other post). I always thought that when I was in remission I would actually feel physically better. I would no longer be continually regurgitating my food for hours after eating, I wouldn't feel the pressure to be constantly near something in case my nausea went overboard. I thought I would feel healthy in remission, or at least a lot different than I do right now.

So if I don't physically feel better, what are they basing my remission status on? That's a great question and exactly what I asked at my last appointment when they gave us the 'R' word. The doctors are basing the idea of remission on my blood panel values. In Inflammatory Bowel Disease they often monitor your ESR, CRP and albumin levels as a sign of what your disease is doing. The higher the values, the worse off you are. My levels have returned to within normal range.

Fantastic, glad to hear that my levels have returned to normal. But hold up, there's a problem with this. In the past, just prior to having scopes done, my blood levels have also been within normal range and yet when they go in to have a physical look, it's come back that the inflammation and ulceration has been worse than ever. So I've had good blood values, but crappy looking insides. This doesn't really surprise me a whole lot though because even when I had my colon and was running to the washroom literally every 15 minutes (I couldn't leave the house and often left blood trails everywhere), I was losing straight 100% blood. With the amounts that I was losing, my blood values should have technically been in the hole, but somehow they were maintained at within normal range, at least until after I had my colon taken out, then I had to have iron supplements. But my point being, my blood results don't tend to reflect what is physically going on with me. Yes, I no am no longer outputting blood, except for my bottom end. That's awesome news. Yet my output is still crazy, at my last set of scopes a few months back I still had new inflammation popping up, and I've been feeling absolutely horrid. I don't even remember what it's like to feel physically well any more, but I know that this can't be how it feels!

Am I in remission? Only time will tell I guess, until then I continue on with the Stelara injections every 8 weeks and attempting to continue living life to the fullest.

How a Bag Saved my Life

Three years ago today, my life changed dramatically. After months of throwing the "kitchen sink" of medications at me in hopes of getting control over the worsening Inflammatory Bowel Disease attacking my colon, we all admitted that things weren't working out as well as planned. My colon was so heavily diseased with what they thought at the time was Ulcerative Colitis, that there were fears that I might perforate the colon. If that happens, it can be life-threatening, and often leads to a lot of complications for recovery. So the colon had to come out if I were to have any chance of living a life outside the hospital. My only hope at this point was that someone else could benefit from my experience, so I decided that I wanted to donate it to research. If it's going to go to waste anyway, someone else might as well have it to experiment on. Who knows, maybe my colon might play a role in finding a cure. That thought brings a huge smile to my face. 

I often get asked if it bothers me that I'll be living with an ostomy for life, or until there is a cure for Crohn's Disease. If I live a full lifespan, I'll have lived with an ostomy for about 75'ish years. It doesn't bother me. Most days I don't even think about it, it's just become the way that waste leaves me; it's become my normal. It is an annoyance at times, because let's face it, poop happens and when it does, it's always messy. But life is messy too, and good or bad, we have to learn to come to terms with it all. 

I used to feel the need to hide my bag from public view, but now that I have my feeding tube, I can no longer wear my pants over my bag. But I've also learned that it doesn't matter to me any more whether my bag might be showing. This bag has given me a life. It's a daily reminder of what I've managed to overcome and the fact that I need to be grateful that I am here each day because of having had this surgery. 

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.

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.

The Curling Community and Me

I'll be the first to admit it proudly; I'm brains, not brawn. Not that I'll never be brawn or anything, it's just that 3 years of being extremely sick have led me away from sports. If I can't walk across a field without feeling like my heart is going to explode, I'm pretty sure most sports are going to be crossed off the list...for now.

Something strange has happened though. Something wonderfully, delightfully strange and awesome has happened.

Sports has touched my life in another very unexpected way. It all started because my grandfather, an ice-maker for a curling club likes to brag and tell stories about me. First he told everyone he met how, when I was out of medical options for healing my colon, I donated it to research. Then he would carry on the story of how I've crossed the line into the Operating Rooms 15 times in 3.5 years. He talks about how I'm out of options to treat my severe Crohns disease. My experiences have left him way too many stories to tell.

But the story he shares the most often is how I decided to make a difference. How I decided to take my disease, and all the "crappy" things that go with it (no pun intended!), to change the experience for other kids. It's the story of Jacob's Healing Rooms.



The curling community has given amazing support to Jacob's Healing Rooms. Last June, the Ladies Division of the Leaside Curling Club hosted their annual golf tournament in honour of Jacob's Healing Rooms. They raised a shocking $3600 which was a really great start to getting the project off and running. This was also the start of my public-speaking, and I remember being so worried about what other people would think, or how they would react when they saw me with my NG feeding tube hanging out of my nose. The ladies made me feel at home, and I was able to share with them the importance of an encouraging, supportive environment on healing.

Next, it was time for the Whitby Curling Club to get involved, and through their collections was able to collect $625. I was super-excited to be able to deliver my first "freestyle" speech after forgetting my prepared speech at home. I loved being able to share my experiences so openly with the members, to build some awareness of what kids like me go through. After-all, we could be the next generation of curlers.

Last, but certainly not least, the members of the Oshawa Curling Club, plastered my article around the club and had a donations jar that members were reminded frequently was "available for your spare change". All of this "spare change" together, added up to $711 which was presented to me for my birthday in December! The thing I like most about "spare change" is what it represents; spare change to create positive change. I was able to talk to the members of the Oshawa club this past week all about change and how if we don't do anything, change won't happen. Such an important message that we all can learn from.

The curling community has done so much to help me out, and I can't begin to express what it means to me. As I said, I'm not a curler. I understand the sport but have never played. But what I can tell you from my experiences so far, is that curlers are full of heart. They are full of compassion and acceptance. They have forever earned a spot in my heart.