Happy 4th Ostoversary to Me!

"Absolutely not going to happen" - that was my response just over 4 years ago when an ostomy nurse told me that most kids who end up having a surgery to create an ostomy end up not even thinking about the fact that they have a bag attached to them for collecting waste. There was just no way I could ever wrap my mind around the idea of what it would be like to have an ostomy bag, so thinking that I would come to not even think about it at all one day... it seemed impossible.

I have severe Crohn's Disease, a form of Inflammatory Bowel Disease (IBD) for which there is no current cure. At the time I needed to have ostomy surgery, I was only 6 months into my diagnosis and nothing the doctors threw at me was working. I was taking handfuls of pills all with the hope of achieving remission, but I would still be at the hospital weekly due to the heavy bleeding. The doctors thought that I had Ulcerative Colitis at first, another form of IBD, and since the inflammation was limited to my colon and rectum, they felt that having a total colectomy (removal of the colon) with an ileostomy (creation of an opening on the outside of the body using the ileum for waste disposal), would be my best chance for regaining my life outside the hospital. I was ready for the surgery but was it true that I would one day come to accept having an ostomy so completely that I would forget about it aside from times of emptying the contents or changing the bag?

I thought that I would be aware of my ostomy every second of every day. Aware of this bag of poop hanging off of me constantly. Aware of being different and at times looking different. Aware of other people's reactions. When people asked me about it, would they get grossed out and treat me different? Would people not want to be near me in case it suddenly exploded, or because they think I might smell (which I can tell you, other than when I have a "code brown accident" there is no smell)? I'm pretty sure that anyone my age who has had this surgery has had similar questions as well. Most kids would have had no idea what an ostomy was, and what it would mean for their day to day life. And not knowing creates fear and anxiety.

Today marks my 4 year "ostoversary". 4 years ago today, I had my colon removed and donated to research, and started pooping into a bag. I was scared being wheeled in to the operating room, my life was about to forever change. I wanted to feel better, to be back to doing the things I enjoyed, but I was nervous about what it would look and feel like afterwards.

The first time I saw my "stoma", the part of my insides now sewn to my outside, I was grossed out. Those first days and weeks, I worried a lot about the bag suddenly falling off, or stuff getting trapped in my new exit and causing new problems. I worried about it being touched in the cleaning process (it doesn't hurt), and dreaded having to do changes every few days for it.

I don't know if it happened over night, or if it were something in the making, but one day I realized that I wasn't actually thinking about it. When I think about how much time I would spend these days thinking about my ostomy, other than emptying it or changing the bag, I would say that I don't think about it. At all. My ostomy has become my normal, it's something that I will live with for the rest of my life, or until Crohn's is cured, which is ok with me. Yeah, it sucks to sometimes have these giant ostomy fails, like when my bag starts to leak and I have no place to go to change it, but I don't find that I'm worrying about those accidents that much anymore, because they just don't happen as often as you imagine when you first start thinking about it. In fact, most of my fears have been completely for nothing.

My ostomy is my bag of honor, it's a symbol of having gone through a very challenging time and having come out on the other side. It's a symbol of strength, of having overcome some of the hugest hurdles life can throw your way. My bag saved my life and taught me that sometimes you just need to believe that it's all going to turn out ok. Yes, it takes time to adjust, but that's true to most things in life. But life does go on, that I can promise you. My name is Jacob and I am an ostomate.

8 Things I Say Instead of "It's Going To Be Alright" as a Parent to a Medically Complex Child

"Don't worry, it's going to be alright".

It's an innocent enough thing that we say that is meant to offer support and encouragement. When I was small and played with dolls, and my dolls had a boo-boo, this was something I said to them. My mother said it to me all the time when a problem came up. And when I became a mom, on the countless nights I spent awake with a sick baby, I would be whispering "It's ok" as I soothed him back to sleep.

I thought my job as a parent was to make things better. I'm supposed to be able to take any problem my child has and be able to work together to find the answer. I'm the boo-boo fixer, whether that boo-boo is physical or emotional. I'm the one who is supposed to be able to assure my child that everything is ok, that things aren't as bad as they seem, that any problem can be overcome with a bit of work. I'm supposed to be the super-mom, cape and all, that with a single wave of my magic wand, make everything good again.

This was my vision of motherhood, as I'm sure a lot of other soon-to-be-moms see themselves being like this too. For awhile, my life as a mother was a lot like this. Colds, ear infections, sore throats would come and go, and everything would be alright again. Growing pains would come and go, and then another period of "alrightness". I could easily soothe my growing boy, telling him "it's going to be alright".

But what about when you can no longer promise this? What happens when you can't honestly say that things are going to get better?

My days of motherhood are now spent playing a lot of other roles, but my primary one is still "boo-boo fixer". 9 years ago, Jacob was diagnosed with epilepsy. Then 4 years ago, he was diagnosed with severe Crohn's Disease. Since then, he's been diagnosed with anxiety, ADHD, severe psoriasis, Long QT Syndrome, eye inflammation, Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome... He's in near constant pain, suffers multiple infections due to his immuno-suppression, and lives with daily vomiting and nausea. My vision of my role of motherhood, of being the one to help make it all right, has been completely changed.

I no longer tell my son that everything is going to be alright. That, in itself, is alright. Jacob knows enough about his medical situation to know that several of his problems have no cure, and can be difficult to manage. He was told that after he had his colectomy, things "would go back to normal, you'll be alright". That didn't happen. With each new medication we try that is supposed to "make things better" our hopes go up, only to come crashing down with severe side effects, or failure to help manage the disease it's supposed to treat. It is devastating to be promised improvement and then to experience this type of let-down. So we don't talk about things being alright in the future, instead we focus on the moment. The little things that we can do together to make each day a bit more manageable. Life has to go on, even when there is no magic wand. There's nothing "alright" with what Jacob lives with daily. There's nothing good that comes from watching your child suffer, other than the motivation it creates to keep fighting back.

How I see my job as a parent has completely changed. I no longer think that my job as a parent is to be able to take away his pain or to hide him from a painful reality. Don't get me wrong, I would give anything to be able to make him better, that still hasn't changed. My job though isn't to find a way though to take it all away, my job is to help my son to develop the skills to cope with the challenges that life has brought his way. My job isn't to protect him from all of the world's horrors, but to teach him to understand them so that he isn't afraid and to allow him to find his own way of making them better. My job is to help him appreciate the small things in life, to celebrate the small successes, and to focus on the moment rather than the long-term bigger picture.

I've watched my son grow in so many ways during his many medical crises, he's actually the one who is teaching me what it means to be a parent. Every time he has to have a painful procedure, and there's been many, he teaches me about bravery. Every time he has to try something new, something scary, he teaches me about courage. He's taught me what it means to be strong, to never give up on hope, to keep going no matter the size of mountain in your way. He's taught me about generosity through his fundraising and efforts to make a difference in this world. Most of all, he's taught me about life and love. I don't need to fix Jacob, he's the one who has fixed me. He's the one who's made me the best mom I could be to him, and also a better person. Things might never be the typical definition of "alright" so instead I say:

We can get through this.
You are so strong and brave, you can do it!
Just keep swimming.
Hold on.
This is just one moment, the next might be different.
Keep trying, keep hoping, keep dreaming.
Live for the moment, in the moment.
You are not alone.

It's Time to Get Gutsy!

On Sunday June 5, my team, Awkward Guts, and I will be walking in the 5km Gutsy Walk! The Gutsy Walk is the annual walk held to raise awareness and research money for Crohn's Disease and Ulcerative Colitis. This will be my 3rd year participating.

Why is this walk so important to me? Because I have severe, refractory Crohn's Disease. Sadly, I am part of the fastest growing age group to be diagnosed with Inflammatory Bowel Disease. I was diagnosed 4 years ago this month, when I woke up one day in severe pain and started pouring blood. It took the doctors about 3 weeks to figure out what was going on, as everyone we consulted thought I just had a bad stomach bug. Oh how I wish that was the case here.

Following my diagnosis, I was started on a lot of different medications to try to get this disease under control. The longer a person has active inflammation, the higher the risks of cancer mutants showing up, so controlling the disease is key in this whole battle. Within 3 months of getting my diagnosis, my disease was so bad that it had destroyed my colon, and we were consulted about our surgical options. It was becoming clear to everyone that I would need to have a colectomy and ileostomy created for my poop.

My battle continued after my colectomy and we started throwing more potions and pills at it. Each new treatment left me with side effects that were serious enough to lead to me stopping that
treatment. I'm also not alone when it comes to side effects. For example, 20% of people who take Remicade will develop psoriasis as a result. I was in that group, my body after Remicade was 70% covered in painful, itchy spots. It makes you wonder whether the medication's side effects are just as bad as the symptom it's managing (it's not, but it makes you wonder sometimes). I also started having liver problems, eye inflammation problems, joint pain. There's so much more that goes with Inflammatory Bowel Disease other than just bloody poop.

In Canada, the "three biggies" for pediatric Crohn's Disease are Remicade, Humira, and Imuran. I've taken the Remicade and Humira, but bloodwork has shown that I wouldn't be a good candidate for Imuran. So when my Remicade infusions caused the psoriasis, we had to go for an option that hasn't been used an awful lot - Stelara injections. I've now been on Stelara for a year, and later this month we will learn if it is working to control the inflammation. Unfortunately, I've had some challenges pop up that make me think that it might not be working that well.

Those are my treatment options in Canada, meaning that we're at the end of the road here. The Gutsy walk means HOPE to me. The funding from the day will go to research programs to help find a cure for this disease. And that will go a long way towards preventing other kids from going through similar battles as I have. If you'd like to donate, please click the link below.

Jacob's Gutsy Walk Page

Short-comings in health care

5 long months ago, I started documenting a journey that I referred to as "The What's Eating Jacob" saga. Nobody at the time could predict that 5 months later, we're still playing the What's Eating Jacob game. Here's a brief recap for those that are new to my story:

In November 2015, I had my Cook Entuit Gastrostomy Tube (GTube) inserted into my stomach. In English now, that's a fancy way of saying my "permanent" feeding tube. At this point, I had lived with a Covidien NG Tube (a tube from your nose to stomach) and the frequent, heavy nosebleeds that I was having with it for about 8 months, as well as a persistent sore where the tubing touched my nose. Two days after having my GTube inserted, I broke out in a widespread rash that the doctors believed to possibly be chicken pox. I spent 2 weeks in the hospital on anti-virals until they determined that I didn't have chicken pox and almost jokingly tabled "perhaps it's an allergy to the tube materials". Atarax (anti-histamine) helped to take away the rash, itch and pain. Until even that stopped working and you could see that wherever I taped the line to my skin, had blistered so badly that it ate a trough through my skin and I had to literally gently pull the line out of the mess. Thankfully, there's an "easy" fix for that: avoid touching the tube to the skin. I used DuoDerm, a protective sticky that forms like a second-skin, to prevent the tube from touching me, and it was no longer a problem. Unfortunately, I still had a lot of soreness and inflammation around where the tube came out of me that wasn't so easy to fix. I had to wait until the beginning of January to be able to switch the tube for a different one because you are not supposed to do any tube changes until the hole into my stomach heals - 6 weeks post-surgery.

By the time January came, I was really struggling with the pain from the tube and was really looking forward to replacing it with Halyard Health's MicKey Low Profile Gastrostomy Button. It's so small that there is no way to tell that I have it and the best part was not having a tube hanging off of me, and the massive amount of tape used to secure it. I thought that this would be the end of the What's Eating Jacob saga. I looked forward to that a lot.

But the saga didn't end. I stayed on the Atarax medication for a few weeks after I had my MicKey placed just to deal with the leftover rash. I then stopped it. Big mistake. A few days after stopping the medication, I started to break out in an itchy rash. It turned out this time that it was an infection. The doctor gave me more Atarax for the itch and antibiotics to deal with the infection. 2 weeks later I was again off the Atarax and had finished the antibiotics. Guess what came back? No, it wasn't the cat, it was the rash. Worse.Than.Ever. And back we went to get some more advice. This time there was no infection present, but Atarax was clearly helping to keep the rash response down to a minimum. Then it started to lose it's effectiveness. I started having problems with granulation tissue forming, and having breakthrough rashes come out of nowhere. Clearly, something was going on here. Our hospital's GTube team said that my mom was doing everything perfectly for managing what was going on, but things just kept getting worse. I think we were all feeling pretty stuck in trying to come up with solutions.

About two weeks ago, things reached a critical point in this journey. I started to have major leakage of stomach acid from the GTube site. So much that even with sponge dressings, I'd quickly soak through my shirt/pants, etc. With the help of our GTube team, we ruled out a problem with the tube itself as a potential cause. Again, we were feeling pretty stuck on figuring this out.

Fast forward to yesterday, the GTube area had started seeping blood for 4 days at this point, and it was majorly painful. I couldn't sleep more than 3 hours without waking up screaming in pain and screaming from the itch. There was clearly something very wrong.

Yesterday I met with Dermatology and the GTube team. Dermatology had referred me to an allergist for patch testing back in January, and the allergist said that he wouldn't see me until the dermatologist sent him a list of ingredients that are used in the medical products that were the likely offenders. So my dermatologist went on a research mission. You would think that a doctor could access this information easily, right? At least I would assume that as a medical provider (or even a medical consumer) you could easily access a product ingredient list. The answer is quite shocking: this information is often hard to come by and a strictly guarded secret.

Imagine this, a medication you take comes in three different brands, each with a slightly different formula. You use each medication for a one month time period, one after the other, and note a similar reaction to all of them. You would want to know what ingredient was in common to all of these products so that you could find out what was likely causing the reaction so you could avoid it in the future, right?

Well, for medications they do list all the ingredients, but for medical products such as feeding tubes, or dressings, the answer isn't so easily found. My doctor attempted to contact these providers and found that they wouldn't give up their secretly guarded information because other people could copy their patent.

Whoa, wait a minute here. You mean to tell me that I, the consumer who pays (or at least my mom pays) mega money on medical supplies doesn't have the right to know ALL of the ingredients that are used in my own medical supplies? I understand that all medical products have to be safety checked and approved, but don't medical companies have an obligation to disclose this information when it causes an adverse effect? I can't imagine that I'm the only one in the world that has had such a reaction.

I sit here now, in pain, with tears forming at my eyes with no immediate end to this saga in sight. The dermatologist is going to try to push us into an allergist ASAP for patch testing. There is a different tube available that does not contain silicone, but at $500 a shot they want to make sure I'm not allergic to the materials of it first (I'm thankful for that!!). They have scheduled me for my next set of scopes and biopsies on May 17 which will tell them not only how the Crohn's treatment is going, but will allow them to have a good look at what's going on around the GTube site on the inside of the stomach. There is some speculation that whatever is causing the reaction on the surface is likely going to be causing some problems on the inside too. What I do know is that we could have had a direction to go to find answers earlier if we could have found out what was in my medical supplies, and it might have helped me to avoid so much pain and tears.

*I was going to place photos for a clear picture of what I'm talking about, but have decided that no one wants to see that. Essentially, I have an orange-sized circular patch of raw, bleeding, inflammed skin surrounding the tube, and a blister-type rash spreading on the edges. It pretty much looks like a pretty bad case of road rash. I have stomach acid pouring over it constantly so it burns no matter if I have cream on it or not. It's extremely painful*

Why Giving Matters to Me

Just over a year ago, my dream idea was born. After spending several long, boring days in treatment rooms receiving IV medication for my Crohn's Disease, I decided that a change was necessary. I wanted to make a place that encouraged healing, that helped kids feel as relaxed during their treatments and distracted from the reality of having a chronic, incurable illness. I wanted to create a way of changing the treatment experience so that kids that came after me, wouldn't have to dread their hospital trips. When I started out, I had this single picture in mind, a vision that I call Jacob's Healing Rooms. You can click here to read more about the changes I want to make. In the year that I've been fundraising, I've raised a total of $17,000 to create child friendly places of healing. But along the way my vision became something different. 

Through sharing my Crohn's, ostomy, and bullying experiences, I've found that Jacob's Healing Rooms is about so much more than just transforming a space; it's about hope, kindness, friendship, encouragement, and inspiration. My vision has changed into something bigger over time, I want to be able to inspire other people to find their own ways of giving back, whether that's as simple as holding a door open for a stranger, or as big as ... well, as big as you can dream up. It's people that offer the world kindness that change this world for the better. 

One day I won't be here. I've often thought of what I want people to remember about me after I pass, whether that's tomorrow or 90 years from now. I want people to remember me as someone who made a difference. Someone who no matter the personal challenges, never gave up on achieving their dreams. I want other people to see that every single one of us are capable of creating change and making this world a better place for all of us.

I'm 1/3 the way to my fundraising goal of $60,000 but I'll never be done giving back. Creating change is something positive that I can focus all the negative stuff in my life on. It creates a purpose from all the negative medical things in my life. Giving matters because giving feels good. 

The Ultimate Deception

It almost sounds like I'm writing a spy novel from the title. But sadly, this is a work of non-fiction. I've been thinking a lot lately about appearances, and how we as a society are quick to jump to conclusions about people based upon what we are seeing. Appearances can be deceiving and seeing isn't always believing.

I am disabled. I have an incurable, difficult to treat disease - Crohn's Disease - that has caused a lot of interference in my life. When I was first diagnosed, June 2012, you would likely look at me and have said "Well there's a skinny kid, he needs to eat more". I was small, but for good reason, I wasn't absorbing my nutrients correctly so I wasn't keeping up with my friends in the growth department. And here I thought it was just because I was the "baby" of the class having a birthday in the middle of December. Oh how I wish that was the case.  When my disease started, while the pictures show me smiling, the reality was that there was massive damage and heavy bleeding going on inside of me. I was so sick that my body was a toxic wasteland, but the only thing you would see is that I was thin.

Then I was diagnosed, put on steroids (the dreaded pred) and people started to treat me differently as my weight nearly tripled. I've wrote before about how I was bullied at school, called the "fat lady", and made to feel really bad about how I looked. But I would also get a lot of stares and "double takes" when I was out and about, people looking at me and making comments about how kids these days ate too much junk. They didn't know that at that time, I was fighting to keep my bowel. That the steroids were the only thing keeping me from bleeding to death. Or that during this time I would have to wake up and take anywhere between 12-18 pills, and that's just to start the day. I didn't look "sick" to a lot of people, but my doctor's were really worried that my colon could bust apart at any time, so the reality was a completely different story.

February 7, 2013 I had a colectomy, the complete removal of my colon, and an ileostomy was performed (taking the last part of the small intestine and tunneling it through the stomach to create a way of eliminating wastes). I finally had something that changed my appearance, my so-called proof that I was indeed sick. Yet it's still something that at the time, I kept hidden from public view because nobody wants to see poop. It changed the way that I could dress though, as there are few trendy clothes that fit right and worked to conceal the bag. Fashion designers don't make cool clothes just for people with an ostomy. But I found that pants that buttoned up or with zippers were just out of the question with my new medical fashions.

Since the time of my colectomy, I have used a wheelchair at times just so that I could enjoy some events that otherwise I wouldn't have the physical energy to do. Such as going to the fair. What I really noticed is that when I was in the chair, people would move out of the way, hold doors for me, and generally treat me differently, but when I got up to go on a ride, I heard people saying "can't be too disabled" and other hurtful comments. There are plenty of people who are capable of walking small distances at a time but don't have the physical ability to be on their feet for hours. My wheelchair wasn't used just because I was lazy, it was used so that I could once again take part in life.

Last February, I could no longer tolerate solid food, so the doctor put me on complete bowel rest and I was fed through an NG tube running from my nose to stomach. I finally really looked the part of being sick with this tube taped to my face. People stared, they asked

questions, they offered to give up their seat on the train at rush-hour so I could have a place to rest. They treated me a whole lot differently and it was only the tube that caused this change. People often let us go in front of them in a line-up. The train gave us a discount because they could visibly identify me as a "person with special needs". At concerts, the staff of the venue would ask us if there was anything we needed to make our experience more enjoyable. People could see that I fit their belief of what a sick person should look like and treated me different.

Now the thing that really bothers me is when people who have seen me struggle say to me "You're looking great, you must be feeling so much better". Whoa. Huh? I've gained a ton of weight (leading to my doctors saying it was a medical emergency), I no longer have tubes taped to my face. All of that is true, but since when is that an indicator of actually feeling better? Why is it that the only time strangers go out of their way to be helpful, is when I'm visibly sick? For the past year and a half, I've lived with paralyzing nausea and daily vomiting. Unfortunately, unless I make a really big mess in front of someone, they're not going to be able to see this. Unless the tears of pain that I try so hard to hide, are falling down my cheeks you can't see the fact that my joints hurt so bad that they make me want to scream. Just because I'm trying to be happy, planting a smile on my face, or able to laugh at a joke, doesn't mean that I'm not sick or that I'm feeling better. Yet, I've met some medical professionals who judge how sick I am based upon whether I'm smiling, laughing, talking, etc. I might look great on the outside but my insides tell a completely different story.

So instead of assuming that I must be feeling ok because I look "normal" on the outside, how about asking me how I'm doing instead? And please, always keep in mind that other people might be fighting against their own invisible demons. Kindness, patience and understanding can make this world a better place for everyone.

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.

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. 

My Ostomy Story - 6 Things I Want You to Know

February 7, 2013 my life changed forever. I was 9 years old, and had lived with severe Inflammatory Bowel Disease for 7 months. I had run out of medication options to help get the inflammation under control and needed to have my colon removed in a procedure known as a sub-total colectomy. I then had to have an ileostomy to create a new way of eliminating poop from my body. Since that time I have lived life wearing a colostomy bag, something you rarely hear people talk about in public. I would like to share here what I want others to know about life with an ostomy.

6 things I wished others knew about life with an ostomy:

1. It's ok to have mixed feelings. I both wanted and didn't want this surgery at the same time. I had spent the last several months before my surgery either in the hospital, in the ER, or in a doctor's office. I had missed a lot of school and the chance to make new friends as I had started at a brand new school. I was tired of being sick all the time and just wanted life to go back to normal. But on the other side of things, I knew that this surgery might mean living with an ostomy forever. I didn't know what it would be like to look at my body after the surgery and worried that my stoma would get damaged easily. I worried what others would think if they knew. Would the kids at school tease me and make fun of the fact that I was even more different? This surgery is a huge life-changer that like life, has both positives and negatives. It's ok to think and feel both sides of this situation.

2. It can be embarrassing. There's no shortage of things that can happen when you have an ostomy. Leaks are one of the major problems with the bag. And they will happen at the most inconvenient times possible. Such as when you are stuck in major traffic and have nowhere to go. Or when you're in a public place and forget your supplies that day. "Releasing gas" or as my friend Jen puts it "Stoma squeeks" are another problem. And they will happen the moment things around you turn silent. There is absolutely nothing you can do to avoid this from happening, so it's best to develop a sense of humor when it happens.

3. There is no shame in having an ostomy. Earlier this year, an anti-smoking campaign featured a commercial with a lady talking about her ostomy bag that she had to get after developing colon cancer from smoking. Having an ostomy was shown as being absolutely disgusting and essentially something to be ashamed of. There are a lot of reasons why a person might need an ostomy, and most of them are for life-saving reasons. If my colon hadn't been removed, I could have died if it perforated. Being able to live is much more important than the inconveniences of a bag. Yes it can be gross to empty, and of course there is a smell, but I'd rather deal with that than not have a life.

4. An ostomy doesn't change who I am. It changes how my bodily wastes comes out, that is all. I am still human and have feelings. I still get worried about what others might think. I still have dreams and fears. I am still capable of most of everything that I was before I had the surgery (no more dodgeball thankfully!).

5. I don't mind you asking questions about it. I'd rather you ask me questions than to shy away from me or avoid me. I don't mind talking about it because it brings more awareness to something that no one talks about. I had never even heard the word "stoma" before 2012 when both my grandfather and I had to have ostomy surgeries (my grandfather is stage 4 bladder cancer survivor). Since then I have met so many kids who live with an ostomy bag, and have helped a few who were going to be going through with the surgery. It's only through talking about it that we can build awareness and acceptance.

6. I don't regret the surgery. Going into the surgery, we had thought that it was going to be a temporary solution until they did an ostomy reversal surgery known as a JPouch surgery. I think in the back of my mind I knew that this ostomy might be forever. My thoughts were confirmed when a few months later I was diagnosed with Crohn's Disease and likely will never be able to have an ostomy reversal. I'm ok with that. My ostomy gave me a bit of a life back again. It helped so that I could at least be at home with my family instead of in the hospital. I'm proud that I was able to accept the situation and turn it into a positive by donating my colon to research to help find a cure for this disease.

Life goes on after an ostomy. It's an adjustment, but you do go on to make a "new normal". Some days will be completely frustrating but when you remind yourself of what life would be like without it, there really is no choice other than to carry on. My ostomy reminds me daily that I am a survivor.

The Importance of an Accurate Diagnosis (Crohn's & Colitis Awareness Month)

November is Crohn's & Colitis Awareness Month. I had never known exactly what Crohn's & Colitis was until I got sick. There's still a lot of confusion out there in the community as to exactly what it is. And it can be a confusing disease to diagnose. It's like a giant game of "What's Eating Jacob This Month?" and I'm the reluctant guest star.

Crohn's Disease and Ulcerative Colitis are known as Inflammatory Bowel Diseases (IBD). Ulcerative Colitis is diagnosed when the disease effects the colon and rectum, but if the disease is elsewhere in the digestive tract, it's Crohn's Disease. These two conditions are often mistaken by the community as IBS - Irritable Bowel Syndrome - (maybe because the acronym is one letter away), which can cause some similar symptoms to IBD. However in IBS, there are often no changes to the lining of the GI tract, you don't tend to see ulcerations develop, the blood inflammation markers don't often go skyrocketing, and it shouldn't cause you to pour blood. IBD is in part thought to be an auto-immune disorder, where my body is literally attacking itself. So why is this disease so hard to diagnose? 

For me, I've always been somewhat on the small side, but I was born in December so of course I'm going to be smaller than my classmates. I never really had any huge problems with my guts until one day I woke up in severe pain in my stomach. Then the washroom visits started. In those early days, we would joke about moving in a bed to the bathroom, it was that bad. Yet, it really wasn't a joke because I honestly was there that much. I knew something was wrong immediately because I was bleeding pretty heavily when I went to the bathroom. The doctors at first thought that maybe it was a flu, or a bacterial infection. One time a doctor even suggested that I go home and drink water! About 3 weeks after my symptoms began, it got to the point where it was clear to even the doctors that I was quite sick. An ultrasound and xray showed that my ENTIRE colon was heavily inflamed, a condition known as pancolitis. To confirm the diagnosis, I had my first set of scopes done in July 2012, and the doctors diagnosed me as having severe ulcerative colitis, and my colon was toxic. 

So why did they diagnose me with Ulcerative Colitis when I now have a Crohn's diagnosis? According to the tests done at the time, and on about the next 3-4 sets of scopes, my inflammation was located only in the colon and rectum. The biopsy reports did not show any of the cells that were more consistent with a Crohn's diagnosis, like granulomas. The doctors were 99.5% sure by the time of my total colectomy surgery that I had Ulcerative Colitis. Out came the colon after all the medications failed to make a difference. 

Things never got better after the colectomy. I kept bleeding, now into my ostomy bag because I no longer went to the bathroom the normal way. 5 months after the surgery, I went back in for more scopes and biopsies. They found that my stomach and duodenum (the first part of the small intestine after the stomach) were heavily inflamed and the duodenum was extremely sick looking. Even then they were reluctant to call it Crohn's until we did a strict 6 month gluten-free diet to rule out Celiac. 

I couldn't ever go longer than an hour, two at the very most without a bathroom trip. I thought at one point I should name the toilet because I was spending so much time with it. Eventually, after 6 long months and 1 Gene Testing later, I was diagnosed with Crohn's Disease when the inflammation failed to get better.

I had just turned 9 when all of this happened.

If there had been an accurate way of diagnosing me right from the start, would that have changed my treatment course? Would I still have a colon? The answer in my case is, probably not. Treatments for Inflammatory Bowel Diseases tend to be the same no matter if you have Ulcerative Colitis or Crohn's. There are some medications which show more effectiveness at treating one or the other, but when it comes to the "BIG" treatments (Remicade, Humira, etc), they're used for both of them. My colon would have had to come out. It was so heavily diseased and damaged that it would have only meant more pain and hospitalizations until eventually it led to surgery anyway. By that time I had had 3 major hospitalizations greater than a month, so I was ready to try to be a kid again.

So why, if the treatments offered aren't going to change regardless of diagnosis, do we need an accurate way of diagnosing between these diseases? Because for other kids (and adults too!) it could make a difference to surgical plans. When a person has their colon removed for whatever reason, there is another surgical procedure that can be done once the person's health is restored, called a JPouch surgery. This involves taking the end of the terminal ileum/ileum (the last part of the small intestine before the colon) and creating a "pouch" that acts like a colon. The person than goes to the bathroom normally again. However, the key word to having this surgery is "healthy". For a person like me with Crohn's Disease, I could develop ulcerations at anytime, anywhere in my digestive tract. If I developed these lesions in my pouch, there is a very real possibility that I would have to have surgery to have the pouch taken out, and I would lose even more intestine. Not ideal. I've already consulted with a surgeon about this surgery and was told a very strong "NO" and basically to run from anyone who says that they would do it. Since I have been in a Crohn's flare for 3 years, I would not be a candidate for this surgery.

But, for other kids the type of surgery they do could be decided based upon which disease they have. For a kid with Crohn's but who has inflammation in the colon, they might just be able to do a resection of an area rather than a colectomy, which might help the child avoid an ostomy bag for life (not that there is anything at all wrong with an ostomy bag, but if it can at all be avoided why not take these steps?!).

Research is getting closer to finding out what is causing IBD to develop, but it's not quite there yet. I strongly believe that once we can find out what goes in to causing IBD, we can then find better treatments or a cure. In the meantime, it's important to inspire all people living with IBD (and other chronic illnesses) to keep up the hope even when hope seems slim. Keep fighting even when you feel like you don't have the strength. Keep focused on the light at the end of the tunnel, we will beat this. 

Jacob's Song of the Day (10/26/2015): "Happy" by Pharrell Williams

Today's song, "Happy" by Pharrell Williams is in honor of another special person who has come into my life. Have a listen and read why I chose this song today:

What are the things and who are the people that bring happiness into your life? What makes you so extremely happy that you want to dance through the city like Pharrell does in this video? Do you have a happy dance?

There's a clown that has come into my life during my journey with Crohn's. He's part of the hospital's Clown Posse, a therapeutic clown who goes around trying to spread joy to seriously sick kids. Meet A. LeBoo:

It's only right that there happens to be a Superman poster in the background, this man really is a Superman. During his weekday afternoons hospital show (on tv throughout the hospital) he can often be found smacking eggs against his head in the "Boiled or Not" game, or having things rolled down a slide, into a bucket of water to create the biggest splash to soak him. He remembers everything about the kids he meets, so even if you meet him again after several months, he still knows all about you. He often comes to my room when I'm admitted and spends some time just chatting it up. No matter how bad I might be feeling, just hearing his voice coming down the hall cheers me up because I know I'm in for some fun. It takes a very special person to do what he does and to do it so well. To be able to enter a hospital room where the kids are extremely sick and see the kid for who he or she is instead of their disease, is amazing. I love seeing my clown on his daily visits, in fact, he's the one thing I miss most about the hospital when I'm not there!

A. LeBoo has helped me so much and reminds me of the importance of laughter and happiness in the medical world. Sometimes, even at my age, you just need to have a good bubble popping session, or need to make things disappear and magically reappear. Sometimes you need to make some jokes about your disease (and there's no shortage of them for intestinal disease!). Sometimes you need to be distracted while nurses poke and prod you or jam things into you. Everyone can use a good "silly time" every now and then!

This is what I want to bring to Jacob's Healing Rooms, I want to bring laughter and happiness to an otherwise nasty part of our lives as sick kids - treatment days. Laughter and happiness can inspire hope and help speed up healing, it can inspire us to continue to fight when we feel like everything is working against us. If you are happy, you're like a peaceful warrior and tend to focus on more of the positive, happier things in your life. This takes the focus off how all the negative things can quickly snowball and helps to not let the disease have such an impact on your emotional well-being. I want to help brighten the spirits of other sick kids by updating the outpatient treatment rooms to make them child-friendly. In order to do this, I need your help. Please consider making a donation to support my #BeforeIDie wish to help make a positive difference.

*To make a DONATION to JACOB'S HEALING ROOMS please click HERE*

A Game of "Telephone" and it's for sure Broken!

For those who are new to Jacob's Healing Rooms - I'm Jacob, I'm 11 and I live with severe Crohn's Disease (as well as a few other medical conditions) and an ostomy. I'm told that my disease is refractory - meaning that it doesn't respond to the treatments they've tried. Yesterday was a trip to the OR to find out if the Stelara injections I'm taking in hopes of ending my 3.5 year flare, and to hopefully get an explanation for the increased Crohn's Disease symptoms I've been having since late spring.

There's a game in kindergarten that we used to play called Telephone. Person 1 would come up with a "message" and the message would be whispered from one kid to the next until it got back to the teacher who would say it out loud. It was very rare that the message was the same as the original version. One of the downsides of having a lot of different specialists involved in my care, even within the same department, that there is a greater chance for errors in communication to take place. Communication is key to improving my health. For example, a few of the dermatology drugs can be used in Inflammatory Bowel Disease treatment, so any changes my dermatologist wants to make for my psoriasis could impact on the IBD, and vice versa. All of my treatment providers (neurologist, cardiologist, dermatologist, GI, dietitian, pediatrician, surgeon) need to be kept in the loop as to "what's going on with Jacob this month". Even within the department, I rely on my messages to be relayed accurately to each member of the GI team involved in my care (nurse, fellow, GI). But the more players involved, the more this line of communication has the potential to be messed up. It happens more than you would think. Friday's Operating Room trip is the perfect example of the necessary information being relayed accurately.

Things started well. The blood lab had the forms for the requested pre-op blood work, so, all was going as planned. I got ready for the procedure and was waiting for the OR nurse to do my final pre-op assessment. When she arrived she read off the chart "so you have a diagnosis of Ulcerative Colitis". Umm, no. I have a diagnosis of Crohn's Disease, which is an Inflammatory Bowel Disease like Ulcerative Colitis but can effect the entire digestive tract from the mouth on down. Ulcerative Colitis tends to be restricted to only the colon, and considering I haven't had a colon for almost 3 years... I have Crohn's. I'm sure it was a sign of the way the day was going to be. Thankfully, my mom has more patience than I do and politely corrected the diagnosis.

Then it was time for the GI doctor that I've never met to come out to talk to me about the procedure. Not that I need to have it explained, I've been through it only a dozen times. Literally. You know it's going to be an interesting day when the doctor doing the procedure had the wrong reasoning relayed to him/her. "So you're here today to have a look to see if we can do a reconnect surgery (JPouch)". Whoa. Wait a second. At no time in the past several clinic visits have we talked about the JPouch surgery. It's often not recommended for people who have severe, uncontrolled Crohn's Disease because if you develop Crohn's in your JPouch, you'll be losing more intestine (and we need all the GUTS we can get. Get it? - Sorry for my sick sense of humor). In fact, when we had looked at this possibility over a year ago, the surgeon had said that he would NOT do it and would highly recommend that I don't find someone else to do it. It was absolutely confusing to both my mom and I why we were all of a sudden talking about a surgery that has been turned down and never again discussed. What really should have been communicated is "we are here today to see how well your medication is working for you and to see if we can find an explanation for your continued symptoms". That's only a bit different than the surgery reasoning. Then, the doctor had asked to have my NG (nasal-gastric) feeding tube to be replaced which I was under, because I have extreme anxiety of anyone shoving anything up my nose and into my stomach. No Ng Tube was sent down to the OR, so they had to go hunting one down.

I had the procedure and the OR Nurse in the Recovery Room prepared my Discharge Notes. There was a key piece that hadn't been communicated - I was supposed to be admitted after the procedure for cardiac observation. The nurse had to call around to find out if this was indeed the actual plan.

When I did get to my room, there had been a lack of communication in ordering my Feeding Tube formula, so I had to go without. Not really a big deal, since I went home the following day, but if the original plan had been followed through on - to keep me for a few days after the procedure - it would have been more of a deal.

Communicate - the act of sharing messages between individuals. It's one of our basic human needs. In healthcare it's an absolute necessity. I rely on my healthcare providers to help me get back to being the best Jacob I can be (at least physically). If the communication within the department and then with other doctors isn't accurate, then it's my health that suffers. I need my specialists' medical help. I need them to communicate their plans to me in detail and with other departments that their changes might effect. I need to be able to participate in my health care and communicate my experience, since I'm the one living this disease. And I need to make sure that my experience is really heard.

I'm trying to stay positive. I'm trying to focus on the bigger picture. I'm enjoying working on my fundraising project and making some really great friends along the way. And that's what the bigger picture is all about - seeing the world and the difference that you can make and going for it. Hopefully I'll have a better health update soon!

And a HUGE THANKS to everyone who continues to offer me their support. It means everything. It really does. Every message I receive helps me to keep my spirits up, so thanks for sharing so much kindness with me.

Jacob's Song of the Day (10/16/2015): "Life's What you Make it" by The New Electric

Today's song was chosen because of the amazing message it shares with the world. The song is "Life's What you Make It" by The New Electric. Have a listen and read why I chose this song today:

"Gotta aim high because life's what you make it". This is one of the basic things that living with a serious chronic and incurable illness has taught me. It would be so easy to throw my hands up in the air in defeat and go a bit off the deep end. I really don't think anyone would blame me if I did considering the journey of the past 3 years that still continues. I could easily let negative emotions like anger and bitterness take over me. I could somedays see running though the streets shouting at the world as a real option. But I don't. Somehow I take all of that negative stuff and just toss (most of) it away. Why? Because life is what you make it. I don't have control over the course my Crohn's Disease will take in the future, or the fact that the medication doesn't seem to be working. I can't control the fact that I will still likely face multiple surgeries in the future to add to the 12 procedures I've already had. But I can control what I choose for my life. I decide whether I choose the positive or allow the negative to take over. When it comes down to it, we're given a choice; stand and fight or give up everything. And in the end I choose to fight because there is no other option.

I'm aiming high, I'm aiming to change the world! "It all comes down to Happiness!"

Jacob's Song of the Day (10/13/2015): "Welcome Back" by Bruno Mars (sort of)

Today's song is a bit different since it's not a radio-song or anything, just a few lyrics in the movie Rio 2. It's called "Welcome Back" and it's sung by Bruno Mars. Have a listen and read why I chose this song today:

For the month of October, I've been participating in a series of challenges aimed at getting rid of bullying and spreading kindness and friendship around the world. Each day +Bystander Revolution issues a challenge thought up by a celebrity. There have been challenges from Michael J. Fox, Lily Collins and Olivia Wilde to name a few that have been revealed so far. Today's challenge came from Shonda Rhimes, and it was to do something that is outside your comfort zone. It's perfect for the day that I am having.

Today was the first time in A YEAR that I've been back to school. Looking at this picture you wouldn't know it, but I was pretty nervous and scared. It's hard being away from the other kids for so long and then just to try to come back as though you'd never been away in the first place. At least in grade 4 and 5, I was showing up more regularly so it makes it easier to fit back in, but now that it's been a year... I was scared that I wouldn't belong. When I woke up this morning I just wanted to close my eyes and go back to bed that way I wouldn't have to risk anything. It's a risk coming to school, to wonder how others will treat you when you're appearance is "different". I was worried that the other kids might pick on me for my weight gain again, or that my feeding tube would make others stay away from me. I was terrified that I would never fit in again with my classmates. I guess in a way it was like starting a new school, but having stories of you going around the new school before you even start (so that everyone knows your name).

It turns out, my worries were pointless. I came, I saw, I conquered. I made it through my entire day without incident - although to be fair, it was only 1.5 hours. And you know what? The class was really excited to have me back! The teacher even made a special announcement to the class welcoming me back into the school. Kind of embarrassing, but kind of sweet too. I even made a new friend in my class, Griffin. I'm not allowed out for recess because the teachers might not know that I need medical attention if something does happen, but I had some friends stick around inside to play a quick game of Monopoly. As scared as I was, coming out of my shell and taking the chance that other people will still like me for who I am, had huge pay-offs. I came out of the day with a smile on my face :)

Having a serious chronic illness like Crohn's is difficult enough, but to be a kid living with it can be brutal at times. Staying hopeful, inspired, determined and connected to others is so important to coping with the emotional consequences of life with a chronic illness. These values are what Jacob's Healing Rooms hopes to be able to encourage in other children receiving outpatient medical IV treatments. By creating child-friendly treatment rooms, other sick kids can be helped to make their journey with chronic illness a bit brighter. Please support Jacob's Healing Rooms and make my wish to help other sick kids come true.

*To DONATE to JACOB'S HEALING ROOMS please click HERE*

Today's Song of the Day (10/03/2015): "We Are Stars" by Virginia to Vegas, feat. Alyssa Reid

Today's song of the day of the day comes from Virginia to Vegas, a band that recently made it even bigger with their hit "We are Stars" featuring Alyssa Reid. I had the amazing opportunity to see Alyssa live in concert. In fact, she was the first opening act that I had seen in concert and I learned that an opening act can be just as good as the headliner. Have a listen and read why "We Are Stars" is my song pick today:

"It's hard to see the light when you're caught up in your life/You're scared and insecure cause now it's fight or flight/Can't think of giving up/You don't know how much you're loved". We are all stars waiting to shine inside.

Today is World Ostomy Day. Never heard of something called an ostomy? Don't worry, you're not alone. I hadn't heard about an ostomy until one day the doctors marched in and said that this was what was going to save my life. Let's go back a bit so I can explain. When I was diagnosed with Inflammatory Bowel Disease in 2012, I was rated on the severe end of the scale. My entire colon was completely swollen, constantly bleeding, and not absorbing or breaking down food the way it should. We tried everything to make it calm down a bit, but no amount of pills or IV meds were helping. The doctors were very worried as we tried to stop the inflammation that my colon would perforate (explode). My colon had to come out (and I made the decision to donate it to science to find a cure).
I was terrified of the surgery at first. I was worried that people would know, of how it would look and feel, and what it would mean for my future. I was terrified that I'd start to leak in a very public place and be teased by others for it. There were a lot of negatives I could think of, but not that many positives.

I had my surgery February 2013, they took out my colon and made an ileostomy. This is a surgery where the very end of the small intestine, called the terminal ileum, is "re-routed" to a surgical opening in my skin and then sewn there to hold it in place. The result is called a stoma. A colostomy kit (a big bandaid type thing with a bag attached) then goes around my stoma to collect my waste.

There's such a fear out there when it comes to ostomies. Most people think that it's older people who end up having an ostomy, but I've met a lot of kids like me who need one to treat IBD, or to treat colon cancer, or other diseases of the intestines. It doesn't make US different, it just means that we poop (or pee) a bit differently than others.

Looking back, I wish I could tell my old self that it would all work out, that it wasn't as bad as people think. An ostomy saved my life. I have been able to talk to other kids waiting for their surgery and share my experience with them. To tell them that I used to worry about what other people would think if they knew. To say that if you're bullied because you have a stoma, it just shows people's lack of education about it all. To say that most of your ostomy nightmares won't come true. I want people to know that living with an ostomy changes you, but it can be a positive change. Don't let other people tell you otherwise.

Jacob's Song Pick of the Day (10/01/2015): "The Greatest Discovery" by Elton John

Today's song pick of the day is dedicated to a special little girl who is turning 6 today, my "baby" sister Chloe. Today's pick is "The Greatest Discovery" by Elton John. Have a listen and read why I chose this song today:

Elton John is singing of the love that two siblings have for each other, and how powerful the relationship is. I asked Santa Claus for a baby sister one year.

I thought of how cool it would be, even if I were only 6 at the time, to have someone for a playmate. I looked forward to sharing everything that I knew with her, even if it was a tiny bit over her head (like my talks on dark energy, physics and chemistry). I wanted to help her learn and to grow into an amazing person. But she has taught me. Chloe understands when I'm feeling bad, when I can't get out of bed, when we have to cancel our plans at the last minute. When I'm having a rough day, she runs and gets her favorite stuffies to cheer me up. When I need to laugh, she's there with her own "interesting" brand of humor. She doesn't complain about the hours spent in the hospital, or when I'm hospitalized for a month and don't get to see her as much. She's not afraid of all the tubes and medical procedures, and asks questions so she can understand more about what I go through.

It must be hard to be her. When we're at Sick Kids and I win prizes of toys, she never gets anything since she's not a patient. Sometimes I'll give up my prize and get something just for her so that she's included. When I've met famous people who come to the hospital to visit, she hasn't been there for most of these special visitors. So I'll try to get something signed for her too, but it's not the same as saying you met them. When I'm doing media interviews and going to Ambassador events (I'm a Sick Kids Ambassador), the attention is again on me. We've had to basically stop going to the movies because I'm not allowed to eat popcorn and it would drive me absolutely nuts to have even the smell near me (popcorn is evil to IBD and ostomy patients - can easily cause an obstruction). Sometimes we'll have awesome plans but have to change those as well. Chloe has taught me patience, kindness and sacrifice. But she's taught me most about LOVE.

I love you to the moon and back Chloe! You are and always will be my little sister. I'll always be there for you just like you are there for me. Happy Birthday!

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!

Jacob's Song Pick of the Day (9/22/2015): "Shake It Off" by Taylor Swift

Today's song pick of the day is "Shake It Off" by Taylor Swift! I would have given anything to be able to go see Taylor in concert, but it's my sister's birthday the weekend that she's performing and my mom couldn't get three tickets. Hopefully she'll have more tour dates in the future! Have a listen and read why I chose this song today:

"But I keep cruising/Can't stop, won't stop moving/It's like I've got this music/In my mind/Saying it's gonna be alright"

A direct quote from me: "'Cause sometimes you just have to shake it off, yo". Nothing is more true of that than having a chronic disease and being a target for bullies. There's a lot more that goes with a chronic disease like Crohn's than just the disease itself. When I'm hospitalized, which happens more than I'd like to admit, bloodwork often shows up at 6;30-7;00am. There's nothing like having that as a wake-up call. Then there are times that you're told that you can't eat. I spent from February of this year until June without being allowed to eat solid foods. Do you have any idea how many food references there are out there? I do. A lot. Then there's the disease itself and the complications from it, the side effects from the treatments, the symptoms that can stop you from doing even simple things. It's a lot to deal with. But sometimes you just have to "Shake it Off". I can't control my disease, but I can control how I let it get to me. If I start the day upset with being woken up by bloodwork, and don't shake it off, it would make for a very long day. If I'm angry at all the disease has taken from me, and don't accept my new limitations, it's only going to make coping with my disease daily that much harder.

I've wrote before about being a "victim" of bullying. I can't tell you enough how much it hurts. When I started my Crohn's journey, I was tiny. Within a few months on the steroids, I pretty much almost tripled my weight. It was hard enough physically to deal with these extreme changes, but the reaction from others really hurt.  It felt like other kids were trying to tell me that it was wrong to be me, that there was something that made me not lovable. I began to dread seeing some of these faces when I went to school. People think that looking physically different makes you different. It doesn't. It makes me human. If we were all the same, what a boring world that world be. With my NG Feeding tube (naso-gastric tube) coming out of my nose and attached to my face, I get a lot of stares. People move away from me. I hear other kids whisper and see them point. These actions also hurt. My message I'd like to share is that you're perfect just the way you are. Bullies seek power. Don't let them have the power over you by believing in their words. By being who you are and staying true to that, you're just like being a superhero.

Jacob's Healing Rooms will help other kids to shake off their problems and let them be a kid again while receiving medical treatments. Please help support my wish of making Jacob's Healing Rooms a place that all kids can be encouraged to be who they are and be proud of how far they have come along on their journey.

Jacob's Song Pick of the Day (9/21/2015): "Firework" by Katy Perry

Today's Song of the Day is one that's both fun and meaningful, "Firework" by Katy Perry. Have a listen and read why I picked this song today:

What a great anthem, right? "'Cause baby you're a firework/Come on, show 'em what you're worth". A firework starts off simple enough, looking really just like a long filled tube wrapped in fancy paper. It's only when it's given a spark of flame that it starts to heat up and take off. At the moment it explodes, we see the beauty that was hidden inside. We all have these little "tubes" within us. Little tubes that if given a bit of a spark and some attention can turn into something much bigger. Each one of us is capable of becoming a firework, we just need that starting spark.

"Maybe the reason why all the doors are closed/So you could open one that leads you to the perfect road/Like a lightning bolt, your heart will glow/And when it's time you'll know". My disease has been like the Tazmanian Devil, a tornado of challenges that's kind of wild and unpredictable. I was diagnosed with Crohn's in July 2012. By October we were already talking about losing my colon and they were preparing me for having an ostomy. I was so not ready for this conversation. It seemed I had just been diagnosed, how could my options already be exhausted?! I was 8 years old and really scared. I didn't know what life would be like with an ostomy, and worried about how it would interfere in everything. At first, I didn't even want to talk about it. But then I kept getting sicker and sicker. It got to the point where I started to think about what a positive difference this might make. It might mean the end of spending my life in hospital, it might allow me to become somewhat of a kid again. By December, I had come up with a plan and was finally ready to talk about having a colectomy and living with an ostomy.

My plan was pretty simple: I was going to lose my colon. No doubt about that fact. I thought about how many other kids were going to get diagnosed with IBD, and how my struggles could just as easily be mirrored in their journey. I didn't want anyone else to go through what I went through. So, without discussing it with my mom first, I turned to the doctor and asked:

"If I'm going to lose my colon, that's ok. But it's only ok if I can donate it to research in hopes that we can find a cure. Can you make this happen?" I made a few people have some tears with my wish. But I thought about what a waste it would be just to throw the organ away when it could come to do some good. I think that every door closed in my case because I was meant to do something good. There's a reason why I'm here and I have a purpose in this life: to help others. My heart certainly glows when I think of the impact that I'm going to have for so many other kids who will follow in my footsteps. I hope that I can inspire those that need to have an ostomy, or those that are going through so many treatments to avoid surgery, that life does go on.

For those who are going to be having surgery, or have already had surgery, the experience for me hasn't been nearly as bad as I feared. Yes, I've had some complications like medical tape issues, but I can tell you that my life has improved greatly since having it done. Before surgery, it seemed that I was at the hospital weekly when not admitted because I was having such a bad time with getting the disease under control. I was missing out on a lot of activities with my friends, and missing a lot of school. The ostomy allowed me to get a bit of a life back again. It's gotten to the point where most days I don't even think about the fact that I poop differently. You do adjust. This does become your "normal". Hang in there.

Jacob's Song Pick of the Day (9/19/2015): "Bad Day" by Daniel Powter

Today's song of the day is especially appropriate for how I feel, "Bad Day" by Daniel Powter. Have a listen and read why I chose this song today:

"Cause you had a bad day/You're taken one down/You sing a sad song just to turn it around"

Everybody has bad days. What are your bad days like? What helps you get through? Does it help you to know that even on what you would call your "worst" days, there are always people out there who have it just a bit worse off than you? It's all about perspective.

As an outsider looking in, you might say my life kind of sucks. I drew the short straw in this game of life. That it's unfair (and you'd be right, no child should ever be sick), that you feel sorry/bad for me, etc. I don't feel that way. At least most of the time I don't. Let me start by explaining what one of my bad days might look like.

My bad day story: I have difficulty sleeping, by 5am I drag myself and my IV pole out to the living room. I have so much nausea that I just want to stick my head in a bucket and hold my conversations from there for the rest of the day. I've already been to the bathroom 3-4 times and I have to go yet again, the effort it takes to get there is exhausting. I'm so dizzy that my IV pole seems to be the only thing holding me down from spinning off this earth. I can feel my heart racing and I want to just pass out. When I go to empty the contents of my ostomy bag, I end up getting covered in poop (happens more than I care to admit). I rest most of the day, feeling like this and then I decide to do something "normal", I go to a concert. As I'm sitting there in between bands, I'm feeling worse and worse but my mom bought these tickets for a band I really wanted to see and I'd feel like I'll disappoint her if we leave. All of a sudden the dizziness goes from a level 10 to a level 20. My vision and my hearing have gone "dull". My mom tells me that she was asking me things but I wasn't responding. She said that it was at this point that I started slumping forward. She all but carries me to the medical team at the concert venue. I throw up. The EMS on site is very worried about me. I get shipped to the hospital and learn the terms "hypertensive crisis" and LongQT Syndrome.  That was a bad day, after all, I missed the concert!  What made it worse was this was the second concert I missed out on, the first being a few weeks before at the Ed Sheeran concert.

Despite days like this, including how I'm feeling today, I still don't think my like kind of sucks. I've met a lot of wonderful people along this journey. Complete strangers who have reached out to me with kind words of encouragement which has come to mean so much. I've learned a lot of valuable lessons. I've learned about determination. You need to have determination just to make it through each day, but more than that, you need it to "live well". I've learned about courage. It takes guts to talk about your guts, your poop, your ostomy. It takes strength to make it through 11 scopes in 3 years and 1 major surgery. The thing I learned most though is compassion. It takes compassion in order to make this world a better place. It takes compassion to be able to help others in a deep and meaningful way. It takes compassion to build a better world. These are wonderful gifts that this disease has given to me and which has inspired me to want to help other kids to make their "bad days" a bit brighter.