Monday, November 30, 2015

A Thank You to a Special Friend

Every now and then some kind stranger comes into your life and their actions leave you feeling completely stunned, but in a good way. I'm lucky enough to be able to say that I've had this happen quite often lately for me. I'd like to tell you about one of these special people: Colitis Ninja (@ColitisNinja on Twitter). Colitis Ninja does a lot of awareness work in the IBD Community, through blogging her experiences, sharing support on Twitter, and creating fabulous IBD Ninja items. One of the wonderful things about Colitis Ninja is her positivity. Living with a chronic disease is difficult, but staying positive in light of the many challenges that come our way, can at times seem like way too big a job. Through humor and positivity Colitis Ninja shares what she's gone through over the years. You should definitely check out her webpage at:

I want to thank Colitis Ninja for being so thoughtful in sending me a fantastic get-better shirt:

The shirt says "I'm a Crohn's Ninja" and here I am doing my best ninja posing. I love my awesome shirt! I'm proud to be a Crohn's Ninja but I'm prouder to be able to call Colitis Ninja my friend. Thanks for being awesome! 

Sunday, November 29, 2015

Giving Tuesday is Almost HERE!

I'm so excited! I had an awesome interview with Reka Szekely, a reporter with The Oshawa This Week/Metroland Media shortly before I went in for my GTube surgery. It was published this past week and the response from people has been INCREDIBLE! To date, we have now officially raised $5000. I still have a long way to go to my ultimate goal, but it all feels like it's beginning to take off finally! Here's a link to the article:

Oshawa Boy, Jacob Ralston, fundraises for Sick Kids while Battling Crohn's Disease

Giving Tuesday is fast approaching - December 1st, 2015! I'll be going on an all out media blitz to try to raise as many $1 donations as possible that date, with all the money going to Jacob's Healing Rooms at Sick Kids Hospital. These rooms for children receiving outpatient IV medical treatments are going to be awesome, and so supportive of what these kids are going through. And that's what it's really about - helping others. This is just something small that I could do to hopefully brighten the lives of others. Tablets for games, visual distractions, and a cheerful environment will go a long way to giving the rooms a much needed kid-friendly environment.

You can read more about my plans for the outpatient rooms by clicking HERE

Giving Tuesday also helps me. I might not get to use these rooms in my future, but that's ok with me. I'm doing this because I remember very clearly what it was like to spend so many hours staring at the walls just waiting for it all to be over. I'm doing this because I understand the anxiety of worrying about the treatments and the medications. I'm doing this for the parents, so that they hopefully can relax as much as possible and not worry about needing to offer constant distractions. I'm doing this for the staff, to give them a morale boost and make them feel excited about where they are working. It's not only the kids using the treatment rooms that benefit from my project, but a much larger community of patients, caregivers and staff. Giving Tuesday makes me feel good inside, even when I'm in a lot of pain and very uncomfortable.

Giving Tuesday gives me hope. There's so much negative in this world, Giving Tuesday counters that by promoting kindness and generosity. I can't think of anything better in the world to offer than love. Jacob's Healing Rooms is my gift of love to other kids. It's my wish to help them feel hopeful and inspired. To dream big and never let go of those dreams.

Please share my Jacob's Healing Rooms messages, especially about Giving Tuesday. If you are able to make a $1 donation, it would be very much appreciated. You can make an online donation here:

Hospital for Sick Children Donation Page

If you don't wish to make an online donation but would prefer to make a cash/cheque donation, please send me a note and I can send you the details of how to make sure it goes to Jacob's Healing Rooms.

And don't forget to follow along with me on Twitter!: @KidWithCrohns

Thanks everyone. Each and every one of you are amazing!

Friday, November 27, 2015

What's Eating Jacob? - Surgery Recovery Update

"Wow Jacob, you've been really quiet, how's recovering from surgery #14 going?". Not good at all.

I sit down to write a blog post and as I'm in the middle of it, something comes along to change everything. This happens about every 15 minutes of the past 3 days. It's quite dizzying how fast things have changed.

I'm HOME! That I guess is the biggest change of all, I wasn't sure they were ever going to let me out of the quarantine ward, where 10 minutes can feel like 10 hours. They were really thinking that it was chicken pox/shingles but the painful torture test known as skin sampling didn't show the virus and neither did the blood. That's great and all, but the question remains: What's Eating Jacob?

Infectious Disease is leaning towards a reaction to the GTube (feeding tube) materials, but since that's not their area of expertise, they can't really say (which is exactly what they said). GI seems to be questioning the GTube material theory as well. It really does worry me if it is the GTube itself, because what then? What do I do to get my nutritional needs met? Dermatology says that sometimes we can develop a rash for a reason that no one can figure out, so we might never know what it is exactly or why.

So I am home but looking at the calendar, I'm going to be spending a lot of time in car going to doctor's appointments between now and 2016. On Monday I'll be seeing the GI team again for them to have a peek at me, then it's Infectious Disease a few days later, then Dermatology sometime in there, as well as a visit to the new cardiologist specializing in electrical problems. Maybe he can give my body a jumpstart.

In the meantime, I'm being tortured by steroid creams which really super-duper hurt to put on, and am taking, according to my pharmacist, an extremely high-dose of a potent anti-viral (valacyclovir).

And that my friends, is the much overdue update on my health.... Now back to my fundraising and spreading happiness to others I go!

Tuesday, November 24, 2015

Jacob's Song of the Day (11/23/2015): "I Was Me" by Imagine Dragons

Today's song choice is inspired by kindness and the power that we all have to make a difference in this world. I have picked "I Was Me" by Imagine Dragons. Have a listen to the incredible explanation that Dan Reynolds, the lead singer for Imagine Dragons, gives for the creation of this song (no official video has been released):

Celebrities have such great power to be able to influence and motivate people to make positive change. Imagine Dragons has created this special project, the #One4 project, to help with the humanitarian efforts assisting the refugee crisis in Europe. All proceeds from sale of this song will go to the cause. This is even more important now than it was when the project was first created because as a response to the recent terror activities, many countries and people are turning their backs on those who are most in need. I especially love that he's holding up a sign saying "#One4 Love" because love is what this world needs. We need to help each other, to give each other a lift up instead of a kick back down. We need to stretch our hands out to strangers and say "Look, we care".

Yesterday at the hospital, I was playing my favorite afternoon kid's game show, Name that Tune, where the winner gets to receive a prize. All the prizes have been donated to the hospital for us kids to have something nice, perhaps to reward us for good behavior or putting up with the painful treatments! Either way, it's such a nice gift for people to give to all of us who have to be in the hospital for awhile. Oh, and yes, I tied for first place yesterday.

When the prize cart came around, I knew right away what I wanted, I wanted to pay forward the kindness of the people who made a donation to the hospital by making my own donation. I chose the ITunes gift card so that I could order this amazing song on my ancient IPod. It really is a win-win, I get a great song and refugees get a little bit more help. More than that though, it makes me feel good to know that perhaps I might have done something good, something to help contribute towards making a positive change in this world.

If you have an Apple Product, please consider downloading this song. Remember that at one point in history, many of our ancestors were also immigrants looking for the same chance that immigrants are looking for today; hope, love and freedom. Remember that the actions of a few people, do not represent the actions of an entire nation of peoples. Think of how different your life may have been if your ancestors had never left their home country to give their kids, and their kids, a chance to have a safe place to grow. Instead of making it an "us vs, them", let's show some compassion and kindness.

Sunday, November 22, 2015

How Not to Recover From Surgery or How I ended up in Quarantine

I have to admit, I have style. I don't do anything the easy way, and when I do something, I commit to it 100%. Day 2 of recovering from surgery to get my GTube placed didn't go as planned, even if it did start off with the idea that I'd be going home today (day 3), plans can go horribly wrong.

It started off with just normal recovery pain and the day went downhill dramatically from there. In the morning, my mom noticed that I was started to get a rash across the belly. The doctor wasn't sure if it was some irritation from the surgical soap, so we took a wait & see approach. We still planned on going home.

The afternoon came, as it tends to do since it follows the morning, and the rash has now spread to the other side of my stomach. Not only that but I'm having a lot of sinus tachycardia. It's now starting to get to be a bit more of a concern, and the nurse mentioned it to the doctor but the doctor still felt that it was a reaction to something.

Finally, the evening comes. The rash has now taken over most of my abdomen. The nurse put in a call to the general pediatrician team to come have a look and when they do the last thing I expected to hear is what I heard: We think it's chicken pox. 

The doctor gave me a dose of Benadryl to try to calm the itching and rule out an allergic reaction. The rash didn't react to the Benadryl, but my heart sure did. I became extremely dizzy, feeling like I was going to pass out and shaking. I later found out that Benadryl is a potential "conditional" medication for a prolonged QT rate of the heart, which is a fancy way of saying that given the right circumstances, the medication may put me at higher risk of having a "heart event". Benadryl is so not a good idea so I lay here rubbing my itchies on the bed.

By 2am, the doctors has been in to look at the rash about 4 times. They decided that I needed to have skin biopsies done to test for infections. At about 3:30am they took a needle and poked about 8-9 different spots that I had in hopes of getting a sample with enough stuff that they could test. Then they had to send for the IV team to start a new IV after I blew the other, and to get bloodwork at the same time.

4:30am and the IV team showed up, they were able to finally find a vein, which was really exciting for me. They immediately started acyclovir, a powerful anti-viral because I have very little of an immune system left thanks to the medications that I'm on.

By 5am I was finally moved to the quarantine ward as they wait for answers to the question that's on everyone's mind "What's eating Jacob?". Since I was moved to a different ward, of course that means a new team and a new intake which ended with the nurses saying that we could expect some company at 7am to do a nursing shift-change. I think this was about the point in time when I realized that day 2 & 3 were just going to be one very, very long day. I'm obviously not going home today.

I've been vaccinated against chicken pox. Unfortunately for some kids who have been immuno-suppressed like me, can lose their antibodies to the vaccines they have had. This is why it's so important to have vaccinations. Chicken pox might seem like a common everyday illness for most kids, but for kids like me it can be dangerous. My heart hasn't settled down yet so I'm still hooked to the monitors, and the pain in my skin has been awful. The antibiotics used to treat the virus could quickly lead to dehydration which wouldn't be good for my heart. There's nothing simple about this "simple childhood illness" for me.

I may have come for the tube, but I'm staying for the quarantine.

Friday, November 20, 2015

The Day After

I'm alive, or at least that's what my heart monitor tells me every nanosecond that it beeps. It's been a VERY long day recovering from surgery #14. I've actually been up since about 3am, you have to love when you just can't get comfortable. I've been in A LOT of pain and today's busy activities didn't help any at making it better. 

Early this morning they decided that they would do my ultrasound to check out my bottom. Well, apparently checking out your bottom really means directly checking out your bottom with the wand. Without anything to relax you, or for pain. I have a new "most dreaded" hospital procedure (and anyone who knows me knows how much I hate the NG Feeding Tube). The kicker was that they couldn't get a really great visual on it because of the pain during it and not being able to get the probe into a good spot to have a good look around. But I guess the doctors saw enough because they said they didn't see a reason why I was passing so many blood clots. Awesome that you didn't see anything in there, but I'd love to know why I can't sit or stand without a lot of pain and pressure, and why all of a sudden for the first time in 3 years I'm passing clots.... things that make you scratch your head and wonder. 

I was in sooo much pain after the ultrasound, I had tears streaming and was crying out in pain the entire time. 

Then came time for the dressing change over the GTube (feeding tube) site. I forgot exactly how much it hurt to have dressing changes done. I've got two more to look forward to tomorrow. I'll try to hold back my excitement about that. 

I finally was able to get some Tylenol for my pain in the late afternoon, but truth be told, it didn't do anything for the pain. I'm trying so hard to pretend to be ok, I've told them that I've been in severe pain a few times today but have to try to get used to it on my own. I'm really hoping it gets better. 

Thursday, November 19, 2015

Operating Room Trip #14 - I came, I saw, I got "tubed".

Today is the first day of the rest of your life. It's weird going to bed and knowing that your entire life is going to change the following day. It's strangely exciting and worrisome at the same time. Today is going to help improve things in my life.

One of the problems with Inflammatory Bowel Disease (IBD) can be some pretty stellar weight lost. I don't recommend this weight loss plan though. I've had 4 hospitalizations in 3 years because of my nutrition and weight loss, which can happen pretty quickly when you have problems getting food in and digesting it. Because my Crohn's Disease is the worst in my stomach and duodenum, daily nausea and vomiting have been a huge issue for me, and I have a hard time digesting foods properly. Which also means I'm not getting the full nutrient value of the food. If I don't get the nutrients, I can't grow correctly. Sometimes when I am having a really bad flare of my Crohn's (above my normal flare), the doctors take away solid food and I get my nutrition only through my feeding tube. This helps to give my stomach and small intestine a chance to heal. Since February I have had tube feedings daily through a Naso-Gastric (NG) tube, fed up my nose and into my stomach. It's one of my most hated procedures. I'd even rather have bloodwork. It's not that it's painful, it's just the feeling of it going up the nose and then down the back of your throat. Ugh, heebie, jeebies.

After 9 months with an NG tube, we've decided that nutrition is going to be a long-term problem. Today I took the step of allowing them to surgically place a gastrostomy tube (GTube). It's kinda cool since it's like a body piercing, only it's in my stomach and has a tube sticking out the middle. The "hole" will heal to form a tunnel straight from my skin and into my stomach. Awesome science at work. But it also means that I have something else taped to my body other than just my ostomy bag.

Surgery went well. The doctors still called me "medically interesting" because they couldn't place the tube in the usual spot because my rib was in the way and my stomach was too far over. So they had to place it more in the middle, but that was the only glitch today. My heart's running fast tonight but they're watching me closely and cardio is supposed to come around and have their poke and prod with the rest of the medical gang.

Today is the first day of the rest of my life and I'm quite excited about that future. I was able to see my favorite clown who came by for a visit and he heard about my $1 donation campaign for Jacob's Healing Rooms to make child-friendly outpatient treatment rooms and gave me a donation! It helped to lift my spirits to still be working on my fundraising even while recovering from surgery.

Speaking of recovery, the pain is starting to hit. It's time for me to get some much needed rest finally.

Huge Hugs Going to Everyone!

Wednesday, November 18, 2015

Jacob's Song of the Day (11/18/2015): "Blue Skies" by Ella Fitzgerald

Today's song of the day is inspired by the idea of accepting reality, no matter how difficult it might be. I have picked "Blue Skies" by Ella Fitzgerald. Have a listen and read why I chose this song today:

"Nothing but blue skies from now on".  It's been a crazy month, even by my own standards. I'm fresh out of surgery #13 and tomorrow will be going back to the operating room for #14, the placement of the GTube (long-term feeding tube).

I've had a week to adjust to the news that we were moving ahead with getting the permanent feeding tube. I wrote a post about my worries and fears when I first found out about it that you can read HERE.

Today I came to the realization that I'm ready. I know that I'm going to need long-term nutrition support; I've been admitted to the hospital 4 times in the last 3 years just for that. I've lived with this NG Feeding tube snaked through my nose and into my stomach since last February. I'm ready to get my face back and remind my friends what I look like without it all there. I'm ok with the fact that this is going to be very long-term. I have such horrible anxiety with the NG Tube insertion so I'm taking comfort in knowing that I won't have to worry about that in the future.

Acceptance is a strange thing. I didn't think I could ever get used to injections but after awhile, it's not that bad (except for some meds that sting!). I didn't think I'd ever, ever accept the fact that my "human waste" is collected in a baggie, but now I barely even think about it. Sometimes I even forget about the NG Tube in my nose until someone asks about it or stares at me strangely. My medical equipment is really just the super-bionic part of me. I wish that it gave me super-powers though.

I think with chronic illness, acceptance is a struggle for a lot of people. Nobody wants to live with an incurable illness that may require a lot of medical attention. Nobody wants the medical interventions that can go with some diseases. Yet, if we want to stay as healthy as possible, these medical treatments are necessary. To fight against them, at least in my case, would be a losing battle. As I see it, the only choice is to accept the changes and adjust to the new normal. And by choosing to accept what is happening to my body, I'm at the same time choosing happiness and hope.

Tuesday, November 17, 2015

The value of compassion

Compassion - a deep concern for the suffering of others that comes from a place of understanding. The world needs more of this, we don't need to look any further from the latest headline news for proof. But even in our everyday lives, we need to live and treat each other with compassion. 

Yesterday was the perfect example of how compassion could have made a difference in my life. I've been missing quite a bit of school, especially for the past two weeks because I've been passing large blood-clots out of my bottom and in some serious pain when I'm sitting upright for too long, or when I go from sitting to standing. I've already mentioned it to the doctor who is going to do more testing to find out what's going on with it, but first thing is first and I need to get through my GTube insertion on Thursday. 

The school board is aware of my medical needs and absences, my cardiologist had to send them a letter before I was even allowed to start attending this year and said that "so long as he feels physically up to it that day, it is safe for him to attend". Fast forward two months later, and all of a sudden I get a call saying that if I don't produce a doctor's note BEFORE I go into surgery on Thursday, they are going to cancel my school registration. That also means that I might completely lose my spot in the gifted program. School is everything to me. My school knows that I'm going for surgery on Thursday and will likely be out at least two weeks. Yet the school board is firm in saying that they must have this note. My mom even asked if she could get one when I'm admitted to the hospital on Thursday but they said no. So now my poor mom is left scrambling trying to find a doctor to write a note TODAY because this is the only time she had left to do last minute things before surgery thanks to other appointments. 

I understand that the school board has policies and procedures but I think the way they are enforced needs to reflect the humane values of compassion and respect. A few days is not going to make a difference in the wording of the note. But it is going to give my family the time we need to be able to track down a doctor. There needs to be some flexibility in certain circumstances. It would have made a huge difference in our lives this week because it would be one less stressful thing added to the plate. 

The moral to my story: You don't always know what's going on in the life of the person you are interacting with. By offering kindness, compassion and respect - really basic things that we're all capable of - you can be the difference between pushing someone over the edge and being a "helper". I know that I would greatly prefer to interact with those that can be "helpers". 

*I'm not saying this to be mean to the people involved in this situation, I'm giving this story to highlight a serious flaw with a huge impact and the need for change*

Monday, November 16, 2015

Taming the Dragon - Health Update

The thing about living with severe, refractory Crohn's Disease is that it's relentless. It doesn't give up because I'm tired, it doesn't go away because it's decided that I've had enough. It's like this dragon that's always sneaking around inside and starting fires. Some fires get put out but others grow and smolder. We can try to calm the dragon down, but he likes to get angry real quick and often at the worst possible times. I wish that I could just put the dragon on the time-out chair and tell him that he can't come out until he agrees to play nice. Only in a dream world.

Last week's GI appointment was better than one before, at least we agreed on my diagnosis (I do 100% have Crohn's Disease) and that we would NOT be talking about a reconnect surgery (reversing my ostomy by building a JPouch inside me to collect waste), at least not anytime in the next several, several years. There was more inflammation found on this set but at least it's not back to the epic level of disaster that it used to look like inside me. Still not great and not the level of healing that they were hoping to have seen.

We've entered a new phase of my Crohn's journey. The doctors have now moved to symptoms management. What does that even mean? It means that there isn't much more they can medically do to get me into remission, so we're going to try to get some of my symptoms under control. I'm not sure how I feel about this statement yet. I want to feel better, which means that we have to manage my symptoms but I want what's causing my symptoms to go away in the first place. I know that we aren't going to be able to cure this for me right now, there is no cure for Inflammatory Bowel Diseases, but I want to go into a period of remission like I see my other IBD friends having. I'm realistic though and looking at the reality of not having achieved remission in 3.5yrs, I know it's not likely to come along anytime soon. But I still dream of it, hope of it, and try to imagine what it would be like. In the meantime, I do need symptom control so that I can get back some quality of life. I need to be able to get back to school, see the friends I haven't seen very much of in almost 2 years. I'm looking forward to getting some of these symptoms under control!  Hopefully we can make the dragon a bit happier.

I guess the first step of that will be later this week with Operating Room trip #14 to get my permanent feeding tube put in place.

Friday, November 13, 2015

Jacob's song of the day (11/13/2015): "Put a Little Love in Your Heart" by Jackie DeShannon

It's World Kindness Day today, so I picked a perfect song to celebrate the day with - "Put a Little Love in Your Heart" by Jackie DeShannon. Have a listen and read why I picked this song today:

"Think of your fellow man/Give him a helping hand". That's exactly what kindness is about. Little things, kind words and sweet gestures can make a huge difference in someone's life. We all need some type of help every now and then, and sometimes that help can come from the most surprising of places. One tiny gesture can have a huge impact on someone's life.

Kindness is love. It's a love for the world and wanting to do everything possible to make a difference, to be a change maker. If I were to die tomorrow, the thing I would want most is for people to remember me for being kind and making a difference in this world. There is far too much hatred that makes the front pages of our newspapers and becomes the leading story on the news. It's time for this to change. It's time to push for the wonderful things that can come out of helping one another instead of beating each other down. It's time for kindness.

Sometimes when I'm feeling my absolute worst and in the hospital, these little acts of kindness from the staff, or volunteers, or even other visitors complete my day. I can remember being admitted to the hospital for Easter and one family went and bought little Easter treats for all of us patients. Even if I couldn't eat it, it was an amazing act of kindness that made the most out of missing yet another holiday. It brought a smile to my face and it still does just thinking about it.

I hope that Jacob's Healing Rooms can help to inspire others to make a difference in their world. It all starts with a little seed of hope and a dash of inspiration. And every one of us are capable of doing something great. How will you show your kindness?

"And the world will be a better place/For you and me/You just wait and see"

Thursday, November 12, 2015

Jacob's Song of the Day (11/12/2015): "One Love" by Marianas Trench

Today's song pick is from a band that I've come to love. I wanted to see them when they performed live over the summer (for free!) at the PanAm Games, but I was too sick to be able to stand outside. My song pick today is "One Love" by Marianas Trench.  Have a listen and read why I chose this song today:

I've written about how music is important to my healing process, it distracts me, changes my mood, and inspires me to move when I really don't feel like it. Going to concerts has been pretty amazing. I know that some people out there are like "Really? An 11 year old going to rock/hip-hop/pop-punk concerts?!" but for those 3 hours that the bands are on stage, it's like being in a totally different world. Most of the time at least (I've had to cut two HUGE concerts short because of my health).

So today I'm super-excited because I just found out that Marianas Trench is coming to town and my mom has the pre-sale password! I wish that we could get the Meet & Greet package for these guys, but I'll be happy just to be there. Which means that I got two amazing concerts in my hometown to look forward to in the spring.

I'm kind of glad that these concerts sell tickets so far in advance (concert for them and Hedley is in the spring). It gives me something to look forward to, something that pushes me through the day to get me one day closer to something great. While I try to stay focused on the present moment, it's always nice to have a short-term goal to work towards in the future. It reminds me that there are brighter days ahead to look forward to.

This is just the sort of thing that I mean when I talk about the power of distraction in children's medicine. When I have something else to focus on, to look forward to, all of the medical stuff doesn't feel so "heavy" and the days don't feel as tortuously long. 8 hours of staring at the paint-chipped walls doesn't make the day go by faster. This is why I want to make Jacob's Healing Rooms a reality, so that other kids getting their IV outpatient treatments can have a place where they are distracted however briefly from reality. A place where they don't feel that a sense of "please just let this be over" or ask "Can we go home yet? How much longer?". I want a place where parents can feel that they too can relax and just be with their child, rather than worrying how they're going to keep them distracted. I want a place where even sick children can feel like just plain "children" again. A place where the staff are excited to work in, that can even inspire them to even more greatness.

It all seems like a pretty simple idea, right? But none of this will be possible without your help. Please help support Jacob's Healing Rooms, follow me on my Twitter account (@KidWithCrohns) and consider making your $1 donation to help make my dream of helping sick kids come true.


It's G-Day! (a.k.a. Biopsy & Scopes Results Day)

Welcome to G-Day, my short form for "Go-Going-Gone Day". Today I get the results back from round #12 of the scopes & biopsies to see how the Crohn's Disease is responding to the latest treatment we're throwing at it - Stelara. Judging by the calls coming in to my mom, I'm thinking that things aren't going to be as awesome as the last set that showed improvement. They've already told my mom that there was more significant inflammation.

Today things need to change. I haven't been able to go to school in a week because when I stand up, I'm so dizzy that I want to fall over. Even just sitting down, I'm dizzy. I can tell you one thing for absolute certain - when you're feeling like you want to throw up, the feeling that everything is moving while you're standing still is NOT helpful! I've also been in more pain lately, but I don't really admit to anyone that I'm in pain, including myself. I'm scared that if I admit I'm in pain that it's going to set off this huge chain reaction of events beyond my control. Yet more and more lately I'm not able to meditate away or ignore the pain.

My mom learned just how rare I really am this week. She was talking to the Stelara drug representative and out of all the patients being treated at the largest children's hospital in Canada, there is only one other child that is on this particular treatment. I knew I was "special" but that special? I wish that things could just once be straightforward with no complications.

Something else really upsets me more than all of this though. There are treatments available in the world that I could try that are not available to me in Canada. For example, the latest Stelara studies to be done, showed that from a control group, to a 130mg group to the 6mg/kg group, the individuals in the 6mg/kg group showed the greatest improvement. The 130mg group had a tiny bit of improvement over the controls. I'm on 90mgs. If we go by weight, I would need about 300mgs, which is an IV infusion dosage. This is an available delivery method in the US, but not in Canada, here we only have 45 or 90mg injections. Then there's the newer medication, Entyvio, that's being used in Pediatrics in the US, and available to adults in Canada, but is months away from being approved here. These are two options that could really benefit the IBD community, especially people like me who haven't responded.

Go, going, gone. I wish that we could GO to this appointment knowing that things are GOING to get better to get these symptoms GONE. As I said, it's 'G' day!

Wednesday, November 11, 2015

Everything Changes - Jacob's Health Update

It was a completely unexpected call that came out of the blue and announced that it was going to change my life for a very long time. Yesterday the GTube (a feeding tube placed into the stomach) clinic called. Apparently, the doctor has re-evaluated the situation after having had the gastric scopes just done, and decided to change his mind considering that at our last appointment it was said that considering my weight gain they likely wouldn't be doing the procedure. Now here we are 2 months later and the procedure (my 14th sedated procedure in 3 years) is going to be done next week.

I'm scared. This has all seemed to happen so fast that I haven't had time to adjust my thinking yet. When I'm faced with a new situation, I like to twirl the idea around in my head a lot, it's my way of coming to terms with some pretty tough situations. I find that by taking the time to look at the situation from all sides really does help to put things in perspective and accept what's about it to happen. When I first had the idea of my colectomy brought up, I felt the same way - terrified at first but as I twirled it around, I slowly came to terms with the idea.

I'm worried that it's going to hurt, that it's going to leak, that I'll somehow pull on the tube and have it break or worse, come out all together. I'm worried about there being this hole into my stomach, even though I know that it's all going to heal around the tube.

On the flip-side, I'm looking forward to getting this NG Feeding Tube off my face. I've had a tube taped to my cheek since February, so I'm looking forward to seeing my whole face again. I know that I'm going to need long-term nutrition support for my Crohn's Disease, so I'm thankful that I won't always have to worry about changing the NG Tube, which is one of my least favorite "experiences". It's going to give me some life back because I'll be able to get a portable feeding pump, which means that when I need to be hooked to fluids or feed for the majority of the day, I won't have to worry about being attached to my dancing partner, the IV pole. I don't have to worry about missing school because I need to be hospitalized for IV nutrition (TPN). I can go on vacation or daytrips much easier.

While it is scary, it really is something that needs to happen and will hopefully go on to improve my life. Sometimes we just have to take a risk, a leap of faith, in order to get the greatest of rewards.

In Remembrance: Jack Cornwell

Today, on Remembrance Day, I honor Jack Cornwell, a boy who died way too young during World War 1.

Like I was, Jack Cornwell was a Boy Scout living in England during the first war. Scouts back then were actually trained as "battle assistants", scouting out enemy locations, navigating, and basic first aid skills. At the age of 16, Jack volunteered for service aboard a warship. Then the battle of Jutland happened.

Jack's ship was heavily attacked as the Germans tried to advance further into Europe. Jack took over controls at one of the ship's guns after the marine was killed. In a short time later, all of the ship's gunners were dead, except for Jack. He continued to hold his position at the gun for 15 minutes despite being mortally wounded which helped to prevent the Germans from taking control of the waters around Denmark. After the battle, Jack was posthumously awarded the Victoria Cross for bravery.

Scouts has named one of their highest awards of merit The Jack Cornwell Decoration. It is the highest honors given to a Scouter who has demonstrated great courage and bravery while undergoing great personal suffering and giving back to their community. In the 2013-2014 Scouting year, I was one of the 4 people selected to receive this great honor across all of Canada. I am truly honored to wear this pin, as it reminds me of the amazing thing that 1 young person has done that really did make a difference in this world. It reminds me that strength comes from a complete determination to face your challenges, no matter how frightening, head on.

Thank you Jack for giving your life so that others might have freedom.

Tuesday, November 10, 2015

Jacob's Song of the Day (11/10/2015): "Everything is Everything" by Lauryn Hill

Today's song is about accepting the cards that you've been dealt and moving on. I have picked "Everything is Everything" by Lauryn Hill. Have a listen and read why I chose this song today:

I've been thinking about purpose. I believe that there has to be a purpose why I'm living with Crohn's Disease. That all of my experiences have to mean something. I refuse to believe that there's nothing to be learned from this rollercoaster of a life, that it was all for nothing.

I'm a science kid. I love learning new things about science and talking scientific theories with everyone that I meet. One thought that really sticks with me is the idea that everything in our universe existed from the second that it was created. It's a theory of the universe coming from a point called a singularity, picture it as an infinitely small point containing everything that has been and ever will be, which blows up (The Big Bang) and creates the universe. Everything that has happened historically since that point was already a given possibility because the universe contains everything that there ever will be. Here's the most awesome thing about this theory: If all of the possibilities are already available to us and we just have to find them, then that means cures for chronic diseases and terminal illnesses are out there. That we just have to keep looking and asking questions. We have to keep trying out new theories to explain why things happen the way they do. It means that there is hope out there. Hope for better days, better treatments, and even a cure.

I like to picture this singularity as the tiniest pinpoint of bright light on a completely black surface. To me, this glowing dot represents hope and its purpose is to bring light to that black surface and create something amazing in it. From this tiny pinpoint of light came all of these amazing little twinkling lights in our skies, lighting a path through the darkness. It's hope spreading and bringing comfort for brighter days. The little stars are like the wonderful people I've met and who have supported me on my journey, they've brought light through my dark days. I like to think that my purpose one day will to be a light for others who are going through this and other personal-related challenges. To remind them that no matter how dark the day seems, there's always a little light, a little hope, at the end.

Monday, November 9, 2015

Jacob's Song of the Day (11/09/2015): "The Show Must Go On" by Queen

Even when everything in life seems so wrong, it's important to keep moving forward. Today's song is the perfect one to remind us all that life does continue, "The Show Must Go On" by Queen. Have a listen and read why I chose this song today:

This is a big week for me. On Thursday, I go to the GI doctor to get back my biopsies and the results of the latest set of scopes. I'm hoping that the doctor can come up with a new plan to help make my symptoms a bit less interfering in my life but at the same time I'm worried that nothing will change. And I need a change. 

I'm not the easiest patient. My body likes to give funky reactions to a lot of treatments. A lot of treatments just don't work. There is no easy fix to get me back to wellness. It's frustrating for me, and I'm sure it's frustrating for the doctors when their amazing plans start to fall apart. I'm sure that my complaints get "old" since I repeat pretty much the same thing at every visit. But my complaints are important in my life. I want to be able to go to school, go hang out with friends but those things are pretty difficult with how I'm feeling. I'd love to be able to go back to Scouts and be able to participate. I need a treatment plan that's going to help me get back on my feet with some amount of quality of life again. 

The show must go on. Regardless of what happens later this week, the show has to keep going on. Today is the perfect example. I had an interview with my local newspaper today and was in tears 10 minutes before it was scheduled because I was feeling that horrible. I even told my mom that I might need an ER trip today. However, since the show must go on and this interview was super-important, I decided to put on my best acting skills and pretend that I could actually get through. I had a fantastic time talking all about the ByStander Revolution anti-bullying campaign, Crohn's & Colitis Awareness Month, and Jacob's Healing Rooms. It was proof to myself that I can still work to make a difference even though I'm feeling so rough. 

"I guess I'm learning/I must be warmer now/I'll soon be turning round the corner now"

Friday, November 6, 2015

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.

Thursday, November 5, 2015

The "Good", The "Bad" and The "Ugly" - Treating Crohn's Disease (Part 2)

For those who haven't read part 1 of my epic Crohn's treatment story, you can go back and read it be clicking HERE.  An extremely short recap: I had been through 8 months worth of different combined therapies and nothing had worked to control my Crohn's Disease.

Little did I know that my journey was really just beginning and it was going to take a turn for the nasty. In February 2013, I had my colectomy surgery (removal of the colon/large intestine/large bowel), donating the organ to research in hopes of finding a cure so others don't have to go experience my story for themselves. I'm planning on writing a completely separate post about the colectomy, so I won't say much about it here other than we were all hoping that this was where the story would end.

It was about a month after my colectomy when I knew that things weren't going well. I was still passing a lot of blood, having low energy problems and just feeling plain awful. At first the doctors were wondering if it was just that I was a slow healer from the surgery, so we gave it a bit of time. By July/August we knew that it wasn't just a problem of "not healing" that there was something else going on. Despite my earlier major blood loss from the bleeding, my body always kept up and my blood levels would stay normal (surprising my docs!). Now, my iron was basically 0 so I spent my summer getting weekly IV iron infusions. August rolled around, the doctors decided to go in and take a look at what was going on again, and discovered for the first time that I had inflammation in my stomach and MAJOR inflammation in the duodenum (the first area of the small intestine after the stomach). The doctors said that this type of damage could be seen with Celiac Disease, so I went on a strict (and horrible!) gluten-free diet for 6 months. We bought new toasters, learned new ways of cooking, and tried every type of gluten-free pizza out there without finding one we liked. Not once did we cheat on the diet. But the diet wasn't the problem.

After 6 long months gluten-free, the doctors went back to take another look inside and found that things were even worse than they had been. I could have told them that from how I was feeling! The doctors started me on Humira, another biologic medication designed to suppress the immune-system similar to Remicade that is injected every 4-12 weeks like Remicade. The Humira shots were painful, I'd rather have an injection of just about anything else. But if it controlled the symptoms it would have been worth it! Unfortunately the Humira left me looking like a car-accident victim. I had at one point over 80 bruises on my body. Here's my legs:

I also had sudden cell death on my arms that turned them brown: 

This was still nothing compared to what was to come. We decided that Humira was not the medication for me. 

I spent that summer (2014) as an in-patient at the hospital for the entire summer when my weight dropped way too low. I was put on TPN, which is a form of nutrition given through the IV. The doctors started talking the 's' word again, meaning more surgery. Instead, they decided to try Remicade again. 

From the start it didn't go well, I wonder if it were a sign of things to come. I had a rash, shortness of breath and fever during my first infusion. But we pushed ahead. After my initial 4 doses they found that I wasn't retaining any of the medication as I should be. So they increased the dosage. Then this happened:

At first the doctors thought I was breaking out in hives, the itch was incredible and wearing clothes was extremely uncomfortable. Benadryl didn't take the itch out of it. Benadryl cream burned to put on. As it developed it became clear that it wasn't hives. The hospital gave my mom cream to put on it, but everytime she touched me I would scream in pain and my skin would start bleeding. Eventually dermatologist confirmed that I was in the small percentage of Remicade users who developed psoriasis from the medication. The psoriasis covered 70% of my body and was the primary reason why I was hospitalized for a month. Ironically, Remicade is used to treat psoriasis!

The doctors decided that I needed both a treatment for my Crohn's Disease since we had now gone through everything that was typically used. I had to stop the methotrexate (a form of chemotherapy) injections because they made me violently sick. I couldn't take the Imuran because there was something to do with my genes or blood that said it wasn't a good choice for me. Stelara (ustekinumab) is also used in the treatment of psoriasis but is just now being investigated for its potential usefulness in treating IBD. Thankfully, because of the psoriasis, I didn't have to apply for special access to have this medication. Even more thankfully, because of the expense of this drug, the pharmaceutical company gives it to me for free since we would never be able to afford it. I started Stelara this past May. 

Stelara really upsets my stomach, but the injections are a lot better than the Humira injections. Unfortunately, I just recently had another set of scopes done to see why I can't eat, and they've found some new inflammation, so it might not be working to help control the disease. It has been wonderful for my psoriasis though!

I hope that my treatment story highlights the need for more research into treatments and a cure for this disease. Stelara is one of the last options remaining. Another newer medication on the market, Simponi, works similar to the Remicade and Humira, so the doctors feel that it likely won't be as effective for me since I've already tried two medications in that family. There needs to be more research into refractory kids like me. Living with Crohn's Disease is hard enough on a child, but to already run out of treatment options is scary. I will have this disease for the rest of my life. I'm 11 now. If I live until I celebrate my 100th birthday, that's 89 more years of living with this disease. I sure hope that in that time they can come up with more effective treatments so that I, and people like me, can have a break from the "roulette wheel of medicines". 

Wednesday, November 4, 2015

The "Good", the "Bad" & The "Ugly" - Treating Crohn's Disease (Part 1)

It's been a tornado of 3 years of different treatments for my refractory Crohn's Disease. Sometimes you imagine the doctors sitting in their rounds and spinning a roulette wheel to decide which treatments they're going to do this week/month. When it comes to treating Inflammatory Bowel Disease, the treatments change from person to person just as the type of symptoms do. Some patients are on a grocery list of medications, while others seemingly take very little at all. Some patients may have combination therapies given to them, others might just have one or two at a time.

When I first started with my Inflammatory Bowel Disease symptoms, I was started on every person with IBD's dreaded medication - prednisone. Prednisone is a steroid that works really well with stopping inflammation, but the side effects are often horrible. Prednisone through the IV worked best for me. Whenever the doctor tried to switch me over to the pill form and then have me start to lower the dosage, I would immediately go into a flare (dramatic increase in symptoms). It was usually enough to land me back in the ER. I went from being a really small 40lb kid to 111lbs at my highest. I would have heart palpitations and a racing pulse, intense sweating, at 9 I was starting to grow a mustache (great for Movember but not so much for 5th grade). I was hungry all the time and couldn't get enough food. I'd have these mood swings for no reason. I stayed on prednisone from the time I was diagnosed in July 2012 until March 2013.

To the prednisone mix, they added sulfasalazine, a medication used in the long-term treatment of Inflammatory/Rheumatory Diseases. Unfortunately, I had to stop the drug before really starting when my liver didn't respond well to it. The doctors decided that my body didn't react well to the sulfa based medications and it was time to move on. 

To the prednisone mix they added some antibiotics that have shown to have benefit in treating IBD. At least I didn't react to them, but they also didn't work that well at controlling any of my symptoms. I stayed on antibiotics until they removed my colon in 2013. But they weren't done adding to the mix yet. 

We then took out the "heavy hitters", the Jose Bautista's of the IBD treatment world, Remicade. Remicade is a great drug for the majority of people that need it. When a person with IBD needs to go past the less intense drugs, this tends to work for them in a lot of cases. It's an IV infusion medication which is made using mouse protein. So I am now part Mickey Mouse. Remicade works to help suppress the immune response in my body to change the way some of the immune cells work. It can be given every 4-12 weeks depending upon how well the person responds to it. They added Methotrexate, a chemotherapy agent to further suppress the immune system and to prevent antibodies from the Remicade. I didn't have any problems with the Remicade the first time around, it just didn't work for me. I continued on Remicade and Methotrexate until I had my colon removed. 

We tried a lot of treatments before I lost my colon, and it was all in the time-span of 8 months. My mom wanted to give all the options a chance before we turned to life-changing surgery, and I can honestly say that we gave it all a really good try. It's just that this disease is so complicated to treat and not everyone responds to the available meds or responds in different combos, that it can be just as frustrating for the doctors too. 

I can also honestly say that considering what was to come for treatments, up until the surgery I had things relatively easy. Tomorrow, I share the "Ugly" as my treatment story continues. 

*Always remember that just because my treatment experiences haven't been the greatest, it doesn't mean that you will also have a similar experience. Don't be afraid to try new things, if you don't try all the options you might miss the one that works for you. And if you do get to the point, like me, where you are out of treatment options - always, always, always hold on to hope. Tomorrow there might be something new. Tomorrow they might make a breakthrough. So keep holding on*

Tuesday, November 3, 2015

Jacob's Song Pick of the Day (11/03/2015): "Heavy" by Emblem3

Today's song is inspired by the challenges that we all face in our lives. For today, I have picked "Heavy" by Emblem3.  Have a listen and read why I chose this song today:

"I knew from the start, the start/All of the struggles that we go through/They may scar my heart/But in the end, it's what will make you".

It doesn't matter whether you are going through health challenges, money challenges, relationship challenges, we all have our own struggles. Some struggles only stay a short time before changing, but other struggles can stay with us for our entire lives. These challenges bring out certain characteristics of who we are, they shape us into the people we are today. How you work to overcome your challenges can be defined as Resilience. The wonderful people at the (on Twitter) were quite touched by the sharing of my story that they honored me with one of their Upstander Awards:

My home nurse and I were chatting today about how crazy a journey it's been with my Crohn's Disease and heart issues over the last 3 years. I've gone through medical crisis after medical crisis with only short-term solutions to try to find something that would get my Crohn's under control. She said that she knows Crohn's is very difficult to live with, but that I'm by far one of her patients who has had the most struggles with it that she's worked with in awhile. Truth be told, it is hard to cope when your disease is so resistant to treatment. Participating in various campaigns and donating my time to help others is something positive I can do that helps me escape all this day-to-day "stuff" that I would love to be able to completely ignore. Sitting sick at home has forced me to connect with others in a different type of way. Making new "internet friends" and spreading the word about giving, hope, and courage has become my new daily "thing".

There has been something great to come out of all of this. I'm reaching more and more people with my story everyday, which helps to spread the word about my #beforeIdie wish to help make a difference for other sick kids by creating child-friendly IV treatment rooms. It's come up to one year since I started making plans for Jacob's Healing Rooms, and all of the work, the frustration at not being able to find words and make sentences is finally starting to take off. I'm so excited to continue to help inspire others through my charity work.

"But You Look Good..."

There's a phrase that really gets to me as someone living with a chronic, invisible (most of the time) illness. I know that it comes from the best of intentions and is meant to lift my spirits, but to me, it also feels like it comes from a place of doubting that I really am sick. I know that it seems to come from a desire by the person who said it to feel better about the situation. 

"But you look good". Of course I don't look "diseased", unless I'm in active psoriasis flare, or am sporting the latest in NG Feeding tube fashion trends, you don't actually get to see my illnesses. My illnesses are buried deep inside, sometimes the only way for the doctor to really even tell what's going on inside is to actually go in with a set of scopes and see for themselves. 

What you can't see is that my insides are often a mess. I have little bleeding sores and blood vessels in my digestive system. What you couldn't see was a year ago when part of my small intestine was so inflamed that pictures of it reminded people more of a colon, and they thought that I might lose that part of my intestine as well. People comment that I look better with the weight gain since I'm no longer such a skeleton that you can count individual bones on me.

 But what they don't see is that there is no real explanation for the weight gain since I'm really not eating anything and my feeding tube calories have been reduced. They don't see that the weight gain has been really hard on my body, making me feel even more tired out than normal. It's impossible to see that the pain in my legs and joints makes me cry out at times and wakes me from my sleep. There's so much about my illnesses that just stay completely hidden. 

"But you look good" is a conversation stopper. I've usually just gave you the honest truth about how I'm feeling when you respond with that statement. It takes away my experiences and passes them off as not-important because I'm looking so good. This also happens quite often in healthcare when helpers make an assumption as to how we're really doing by how "good" we are looking. I've once spent 20 minutes going over my concerns with a healthcare provider, and at the end of my how-I'm-doing-update they responded with "But at least you're looking good". That doesn't mean much when I can't eat anything without either wanting to throw up or actually doing it. It doesn't mean a lot when I'm just not up to doing normal kid things like Halloween trick-or-treating. It doesn't bring me closer to my goal of wanting to feel better. 

Always remember that you can't judge a book by it's cover so you can't judge a person by their appearance. I'm thankful that at least I still have my "good looks" but when it comes down to it, it's more important that I feel good too. 

Monday, November 2, 2015

Jacob's Song of the Day (11/02/2015): "One Step at a Time" by Jordin Sparks

Today's song is brought to you by a metaphor/cliche that is often used for anyone that is struggling at the moment. I have selected "One Step at a Time" by Jordin Sparks. Have a listen and read why I chose this song today: 

We often talk about our life as a journey, and the need to keep moving forward, the need to keep putting one foot in front of the other. Physically, I'm feeling pretty rough these days. I was really down on Halloween because I really wanted to go out trick-or-treating but could barely stand without feeling like I wanted to fall over. I also can't eat candy (I'm on a strict no preservatives, spices, artifical colorings and flavorings, no-fun-at-all diet), and I can't digest raisins. That doesn't leave a lot of options for people like me! Actually, it gives us no options at all! So I told my mom to take my sister out anyway and I would hand out candy. 

Then I decided to take one step at a time. I decided that I wasn't going to let this disease take yet another holiday from me. I quickly assembled a costume and even managed to catch up to my sister. 

I was only able to make it to about 8 houses, but that's what taking one step at a time is all about. You need to be able to celebrate the tiny steps forward that you can take. 

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.