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.

A Million Thank Yous from the Heart

Family. Friends. Community. These things are on my mind as I sit down on my 13th Birthday to write what I hope to be is one awesome thank you letter. These three words are so important. Your
community is your home base, they're all the people who you haven't met yet but are just waiting to become friends. They're like the space around an atom, they're there but they're invisible until you go looking for them. Then you have Friends, who are like the electrons surrounding the nucleus. They help to bring energy and support the nucleus, consistently there even though they might move around a lot. Then you have family, which is like the nucleus. It's tightly compacted, full of possibilities and serves as the heart of the atom. My nucleus, my family, grew huge over the weekend!

This weekend I hosted Jacob's Birthday Bonanza, my drop-in birthday fundraiser for Jacob's Healing Rooms to redo the outpatient treatment rooms (4C) at Sick Kids Hospital. It was a huge success but only because of family, friends and community. Without the help of a lot of people, most of whom were strangers to me, Jacob's Birthday Bonanza would not have been the success that it was. I owe a lot of thank yous. It's this outpouring of generosity that inspires me to keep going, to keep trying to make Jacob's Healing Rooms become a reality, to keep dreaming of changes I can make to help this world be a kinder and more welcoming place. 

To Mayor John Henry, MPP Granville Anderson, and Councillor Willie Woo, thank you all so much for taking the time to come out and take part in my birthday. It means so much to me, and I was happy to be able to share my special day with you all. I can't imagine too many other 13 year old have the honor of saying that they celebrated the day with their local politicians!





To the amazing Durham Regional Police Services - THANK YOU! Your
attendance made me feel pretty extra special on my special day. I don't know too many other 13 year olds who have a whole bunch of officers show up at their birthday parties. It was so overwhelming that you all would take the time out to come and support Jacob's Healing Rooms. I look forward to my tour!


To Pepper the Clown and Bob the Magician - What an amazing surprise for you
both to donate your time to help keep my guests and I entertained. And
entertained you did! Not only are you guys fantastic at what you do, but you're also incredibly warm and generous people. I felt so incredibly lucky to have you both at my party!




To Boston Pizza Oshawa - Wow. Your support of making Jacob's Healing Rooms come true is absolutely amazing. Thank you for going so much above and beyond what anyone could possibly hope for. The pizza donations were a huge hit with everyone (we were only left with 1 slice!), and I love the idea of selling the kids club meal cards with $1 going back to Jacob's Healing Rooms! I can't wait for our Celebrity Serve Night!

To Jack Astors (Whitby) - Incredible. Every now and then you run into extremely special people that

really make a difference. Thank you so much for jumping on board to support Jacob's Healing Rooms from the moment you heard about my project. The outpouring of love from your staff has been so overwhelmingly amazing. The huge tray of cookies was so very thoughtful and yummy! I look forward to working with all of you around the Jacob's Healing Rooms server shirts - I have some ideas! 

To the Whitby Curling Club, thank you for donating the space for a discounted rental price! We were able to transform upstairs into a fun-filled party room quite nicely. Your support of Jacob's Healing Rooms has meant a lot to us! 

To Karen, Marilyn and Ken Easby from Gold Reflections (Bowmanville Mall), thank you for your never ending support. From running around with my mom to ask for donations, to making sure we had everything we need and helping with the set-up, donation table, our special surprises and clean-up, you guys were there to help us out. 

To Jen Doolan, Doug Hamilton, Doug Izard and Robyn Minnikin - Thank you for helping in the set-up and clean-up, and arranging things for us during the party to help avoid crises. It was hugely appreciated! 

To Trisina at Skippy Cakes (Hamilton) - Your cake is a work of art. Not sure if I or my mom told you,
but when I was younger I used to re-read the Lorax all the time, it's one of my Dr. Seuss favorites. Thanks for being so awesome, driving all the way from Hamilton just to come out for my special day. And helping to clean-up afterwards, even though we mostly chatted rather than worked! 

To Jen of Jennifer Rue's Photography, thank you for taking such beautiful pictures of my guests and I.  You have a special talent with that camera. Thanks for being a part of my day. I can't wait for our next photoshoot! 

To Andrea Kirkwood-Look, Emiko Balazik, and Alison Smith (Ali Katz Cookies) - Thank you so much for providing such yummy snacks. Our bellies much appreciated them! 

To all the companies and individuals who donated such amazing prizes - Mandy Rusk, Clare Izard, East Side Mario's Whitby, Party City Whitby, Bev Bradbury, Buffalo Wild Wings Oshawa, Wild Wings Whitby, Melanie Pringles, Putting Edge Whitby, Boston Pizza Oshawa, Billie Jax's Whitby, Mastermind Oshawa, Scholar's Choice Oshawa, Edible Arrangements Whitby, Swiss Chalet North Oshawa - Thank you for being part of my special day. Without the generosity of people like you, it would be so much more difficult to make my dream into a reality. 

To those special people who took the time to come and hang out with me, thank you for making my day so very special. We may have started out as strangers, but you are all now my family. I couldn't be luckier to have such an amazing and supportive team of people cheering me on. I will always treasure the memories that we created. 

Jacob's Birthday Bonanza has raised $3674.65 so far thanks to the kindness that everyone has shown to me. Thanks for sharing in the best birthday I could have asked for! And Thank you for joining my family. 

I've Got This Feeling...

My life is complicated. At 12, my medication list is at times longer than those of senior citizens. I have more specialists than there are teachers at my school, or at least close to it. I have seen a doctor or health professional at minimum once a week for the last few years. I spend more time in a waiting room or doctor's office than I do anywhere else. My health prevents me from going to school for extended lengths of time, which does nothing to help build my friendships. This is my life, for better or worse. I am the one who has to live with having severe Crohn's Disease, Ehlers-Danlos Syndrome, Psoriasis, and other conditions. I'm the one who has to live with an ostomy after my colectomy, as well as a feeding tube. This is just the way my life is. 

I had a recent experience which has been on my mind a lot and really bothering me. I had an encounter with a few mental health professionals who had completed an assessment focusing on the way illness has "invaded" my life. Because let's face it, chronic illness is just like an invasion. During the initial assessment meeting, my eyes had started to tear up from the dust or lighting in the room, or else from trying to hide a yawn. One of the mental health professionals was quite quick to point out in front of the group that I started crying when we started talking about a certain subject (I can't remember what it was). He went on to place all of these feeling words on me, and to make sweeping statements that in no way applied to what I was feeling. But I'm one of those kids who won't disagree with adults, at least right away without thinking about things first, so I didn't jump up and say "whoa" even though afterwards I certainly did. 

On our recent follow-up with them to receive the results of their assessment, it left me wondering who the heck they were talking about, because it certainly wasn't me. Another mental health professional said that I was likely internalizing my feelings because I didn't want to burden anyone with how I felt, and that when I started crying during the meeting it was a sign of deep, buried feelings. I think I'm pretty clear with my feelings and have expressed them plenty of times in very public ways such as being published on The Mighty about my experiences being bullied, and living with an ostomy. 

I'm also "too accepting". It is thought that I jump to accepting my health problems too quickly and don't allow myself time to feel the negative. That acceptance is the way that I use to escape from everything that life has thrown at me.  And I jump too quickly to acceptance because I feel "why bother" talking about the negative. Which goes hand-in-hand with me being "too positive", which I also use as an escape route. 

This has been really upsetting for me. I've worked hard to accept that my "old self" is just that, my old self. My life has changed dramatically but it's still a good life. My mom has always said since I was born that I have a choice when it comes to bad things; I can either let it eat away at me and be miserable, or I can find a way to work around it, to adjust. 

Being chronically sick takes a lot of energy out of me. Just to get through a school day right now requires every bit of my super-human strength. Feelings require energy too though, and if I spend all of my energy on focusing on the negative, that's less energy I have for everything else. Don't get me wrong, I still cry, I still get really frustrated and go off on 30 minute rants. But then I move on. I have to. If I don't keep moving on, what good is that going to do? If I chose to stay miserable, to stay in that place of anger and sadness, wouldn't this have more of a negative effect? So I chose to go to my happy place. My happy place is helping others. The feeling I get when someone says "Thanks Jacob, you're a great friend", helps me. It gives me strength to keep going. It inspires and motivates me. It makes me feel like I can accomplish anything. 

What I am having a tough time accepting are the assumptions made about me without really getting to know who I am. Things like "Well a lot of kids your age Jacob feel that....", or "a lot of kids that we see like you feel....", are not predictive of how I'm feeling. I was more than happy to discuss my feelings directly when they were chatting with me. But they also needed to be willing to hear the answers that I was giving them and not put words in my mouth, or tell me what I'm feeling based on the way "most other kids" are.  I am not "most other kids", I am ME. I am Jacob, and I have feelings that I'm not afraid to share. This confuses me. I can't talk about problems I don't have, and because a lot of other kids feel differently than I do, it's a problem? Since I don't have problems with being overly angry, or depressed at my situation, that's also a problem? But then on the flip side, if I only spoke of the negative, wouldn't that also be a sign of problems? And if I deny that I feel this way, than I'm just stuck in denial. And here I thought that the goal of the game was acceptance and adjusting to your new life by using positive coping skills. 

I've decided to stay positive, that there's nothing "wrong" with being me. I like me. I think I'm doing an amazing awesome fantastically superb job coping so far. 

The Great Return...The School Year Begins

Stop the presses! This week I did something that I haven't really done in the last 2 years, I went to school. Not only did I finally manage to walk through the front doors, but I made it through two complete days!

It was almost like being a rock star. I walked around the corner of the school to gasps, and hearing my name over and over again. My old school friends hadn't forgotten me, which was clear since I was surrounded by people coming up to welcome me back. It's a weird feeling to try to pick up where you left off when it's been 2 years, something worthy of an episode of the Twilight Zone.

Physically, I'm exhausted. I'm in pain. And I'm constantly overheated since the class is not air-conditioned and it's hotter than India here right now. Which also means I'm constantly dehydrated. It's similar to the song about bones, except:

"The overheating is connected to the... dehydration.
The dehydration is connected to the... dizziness.
The dizziness is connected to the vomiting.
And around the loop we go". 

Yet I'm still lucky. I, at least, got to experience my first day alongside everyone else. There are some kids who don't get to have this experience because they're in the hospital, or at home too sick to go, or in some type of treatment room. For once I was able to do something so incredibly "normal", that it's often taken for granted by so many of my friends. Two years away from everything has taught me to be a bit more thankful for the "normal" experiences that I do have. I may not be able to run around the school-yard with my friends, join any sports teams, or even participate in some classes with my friends (I am not allowed to do gym, and I haven't had a french class since grade 4), but I'm at least there with them.

Being away from school so much over the last 4 years, also presents it's own challenges. For example, at my school we start learning to play instruments in grade 4. My instrument of choice was the french horn, which my mom went out and bought for me. Now, let's pause and consider my instrument of choice in terms of my health. I am constantly dizzy and nauseated. The french horn, for those who have never played, requires a great deal of air control and extremely strong lip muscles. When I start to play, within minutes my dizziness has me on the floor. Holding a note for an extended length of time....I won't say impossible but certainly difficult. So, because my music teacher has to start me off from scratch, she has given me the option of changing my instrument. Thankfully my mom owns most of the instruments already, so I have the flute, clarinet, alto sax, or piano to choose from. Now to decide what the least physically demanding instrument would be!

Anyway, the big thing is I made it through the first week. It's such a huge accomplishment for me!

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.

A HUGE Thank You to the Ladies of Leaside Curling Club

Kindness. Generosity. Philanthropy. Charity. These are words that matter, words that will make our world a better, more gentle place for everyone. The wonderful, amazing Ladies at Leaside Curling Club have all of these characteristics, and then some.

I was honoured to once again be chosen by these ladies to have Jacob's Healing Rooms be the recipient of their annual end-of-the-season charity golf banquet. Jacob's Healing Rooms is my vision to create a more child-friendly place at Sick Kids Hospital for short-stay treatments, such as regular IV medication infusions. This is my dream and how I want to be remembered, as the person who did something positive to change other people's lives. It may be my dream, but it takes a whole village to make my dreams into a reality. I've heard a lot about how the curling community as a whole loves to help out special causes, and I've been so fortunate enough to experience this with not only Leaside Curling Club, but also the Whitby Curling Club and Oshawa Curling Club too! The response from the curling

community has been so overwhelming, but in a good way!











Our event was held on May 31 at the gorgeous Thornhill Golf and Country Club. The first thing that I immediately noticed was that a lot of the ladies and the staff were wearing my Jacob's Healing Rooms t-shirts! It was so touching to have people believe in my cause so much that they were
wearing t-shirts to promote it. I was so thrilled to be able to speak to the ladies about how Jacob's Healing Rooms will help children to heal and life as a child with a chronic disease. I hope that I was able to inspire at least one other person to go and make their own positive change in this world.

Thank you ladies for once again showing me what kindness can do. Together we raised just over $5000, which will go a LONG way towards making my dreams come true. We still have a bit to go, but you all have reminded me that if you can dream it, you can make it happen with a lot of work.




You can read more about my Jacob's Healing Rooms plans by clicking HERE.

#MyGivingStory - Giving Tuesday Plans to Help Sick Kids.

#MyGivingStory starts with a diagnosis. In July 2012, at the age of 8, I was diagnosed at The Hospital for Sick Children (Sick Kids) with severe Crohn's Disease, a type of Inflammatory Bowel Disease. Over the next 3 years, I would have many ER visits, hospitalizations, medical appointments and have been wheeled into the Operating Rooms 13 times. One of those visits was to lose my colon which I donated to science to help find a cure for this disease so that others wouldn't have to go through these struggles.

Last winter, I was receiving Remicade IV treatments again. Remicade is one of the medications that is often used once a patient has failed to respond to other medications. Patients at Sick Kids will be started on Remicade infusions as an out-patient, and receive their first 3 sets of infusions in the group treatment rooms. Here's what the treatment rooms look like:

As you can see from the pictures, the rooms are very plain, and do little to offer distractions from the medical treatments or a source of entertainment for the kids. There are two televisions suspended from the ceiling but they are out of the control of the kids since the remote is attached to the bottom of them. And there's always a problem on agreeing what to watch since the person sitting next to you might not like what you want to watch. I've spent 8 hour days in rooms like this while getting my IV treatments.

If there's one thing I learned through my journey, it's that distractions help in the healing process. They can take away the anxiety that you feel when getting treatments, the worries about whether it's going to work, distract from the pokes and the pain. Having a positive outlook helps greatly in the healing process. When you are feeling "down", the pain and other symptoms can make you feel even worse. Feeling encouraged, supported and hopeful are extremely important in the healing process since the disease effects us emotionally as well as physically. So I came up with a plan to help make this happen.

I asked my mom if for Christmas I could ask for the ability to transform this place into a child-friendly place of healing and hope and the plan for Jacob's Healing Rooms was created.

For #MyGivingTuesday I'm asking for $1 donations to Jacob's Healing Rooms. Your money is going to help me to install tablets at each treatment chair so that patients will have a source of entertainment, be able to connect with other patients in the hospital and across Canada using UPopulis, check their e-mail and of course, play games. In each room, I'm going to purchase a colorful bubble-tube machine as a source of distraction and brightening up the room. I'm hoping to get a fresh coat of paint in a relaxing color (I find the yellowness of the room hard to look at), and put cloud panels covering the lights.

This past June I had a medical crisis that reminded me that life was short. I have been having some problems with the electrical activity in my heart. This has only renewed my determination to make a difference in this world and in the lives of other sick children. Jacob's Healing Rooms has become my #BeforeIDie wish.

Your $1 could help me make this wish come true. It could bring a smile to a sick child's face, give hope for a brighter future, and inspire others to make a difference in this world. Your $1 could make these rooms amazing child-friendly places of healing. Your $1 could take the stress off of parents who are also worried about their child and struggling to distract them during the long treatment day.

This #GivingTuesday please think of Jacob's Healing Rooms and make a $1 donation to help make my wish to help other sick kids come true. And please share my story with as many others as possible. Together we can make a difference.

Here is the link to my Sick Kids Donation Webpage: Jacob's Healing Rooms Giving Tuesday Donation Link
You can follow my story on Facebook: Jacob's Healing Rooms Facebook Page
And I'm on Twitter: @KidWithCrohns
And on Instagram: @JacobsHealingRooms

Bad to Worse to Horrific: The Graphic GTube Story

This is a post that I wasn't going to write. It's a post about how we all deserve to know exactly what is in the products that we rely on to maintain our health. Sure, pharmaceuticals and supplements have to list their ingredients, but beyond that, it's really hit and miss. I am going to give a very clear warning right now, right here: If you are squeemish, if you have a weak stomach for graphic pictures:

THERE ARE VERY GRAPHIC PICTURES AHEAD

This is a NG Tube
I had it for 9 months.

The "What's Eating Jacob" saga goes back in history quite a bit. It goes back to when I had my first NG tube (nasal-gastric tube for feeding). Even though obviously having a tube shoved up your nose is going to be a weird sensation for anyone, it was more than that for me. I had daily pain in the upper part of my nose and the back of my throat from the NG tube. I would get frequent nosebleeds and always had a constant sore at the corner of my nose where the tube touched flesh. The doctor at the time attributed the nosebleeds to just dryness and irritation from the tube, so said that I should just use some nasal mist to keep things moist in there. I never said anything more about it. 

How it started

Fast forward to November 2015 when the team decided that it would be best if we replaced the NG tube with a semi-permanent GTube (an implant into your stomach). Two days post surgery, I broke out in a widespread rash on my stomach and chest. It was so itchy and spreading so quick that the team thought that I had chicken pox. I ended up in the lock-down infectious disease ward for a few
weeks on IV anti-virals just in case it was chicken pox. I was also taking the anti-histamine medication Atarax for the itch. The team determined that I didn't have chicken pox and I was discharged home with a few weeks worth of Atarax while the rash went away. 

This is actually an improvement.
Picture taken about 2 weeks after insertion

Once the Atarax was over, where-ever the tube touched my skin would actually eat troughs through my skin where I would have to pull the line out of the "groove" which wasn't the nicest of things to do. But we came up with a solution for this, use DuoDerm (it's a special type of dressing that forms like a second skin) under the line and then tape it down. I no longer had problems with the line eating my skin after that, it was just around the opening where the tube touched that was raw and bleeding. The team said that I was likely reacting to one of the materials in the line, I was given Atarax again, and told to wait the 6 weeks from the date of surgery before we could swap it out. 

6 long weeks. 

My Mickey with granulation tissue
problem

At the start of January, almost like a delayed Christmas gift, I had a new type of tube inserted, a low-profile MicKey button that sits pretty much flush against my skin. I was on Atarax at the time it was inserted and thought that things were going better. I mean, it had to go better than the last tube experience, right? 

Not so much. 

Worsening rash & reaction

I took the Atarax for the first few weeks after changing the tubes over, which helped to keep "stuff" from happening. Then I ran out of medication. We were going to see what happened. What did end up happening was another rash and a lot of granulation tissue (tissue the body sends out to heal an area) forming that was bleeding around the entrance to the stomach. I went back on Atarax and things improved for awhile. Until the dam burst. 

For the past few months, this area has been nothing short of torture. As you see in the pictures, I have a huge raw, bleeding and painful area around the tube. I start bleeding just with air exposure, but when I have to put up with the cleanings... yowzers. Things just keep going from worse to worse. 

My medical team believes that I'm having a reaction to the materials in certain medical supplies such as the tubes, some bandaids, Tegaderm film that is used to secure IV lines. My dermatologist sent a referral to an allergist for patch testing to determine what it is I'm reacting to. Then things started to take a weird, interesting and horrific turn.

The allergist called back and said that the dermatologist needed to supply a list of ingredients from the potential list of offending medical supplies before he could see me. It makes sense, in order to test for something you need to first have a list of potentials to test for. You can't just test every substance known to mankind. 

You would think that this list of ingredients would be available, after all these are healthcare products we're talking about. Would it shock you if I told you that that isn't the case? Would you believe me if I told you that medical product ingredients are extremely hard to track down? Even my doctor was met with resistance when she tried to find out what these tubes were made out of. 

My mom decided to try to track down the secret ingredients listings for some of the medical products I use daily. She called the makers of the actual products for my feeding tubes, as well as for a few of the dressings I use. Here's an example of the difficulties we faced: 

My mom called one company and asked for customer service. She explained the situation and asked to find out what exactly it was made of. Customer service replied that they did not know, and that she should call product development. They transferred her to someone else. That person said that she needed to call Customer Service in Canada (because we're Canadian) and they could help us. My mom called Customer Service again, who initially told her that any of the vendors could answer our question better, but then told us to call Product Tech Support. Yes, they have tech support even for medical supplies. The Product Tech Support, who you would think would know their product the best, was unable to find the answer for us. But he said that he would try to track down the information and call us back. When he called back all he said was "I spoke to the PRODUCT ENGINEER who didn't know the exact ingredients and couldn't confirm one way or the other if the product contained silicone" (The dermatologist believes it might be a reaction to silicone because that's the one thing we know for sure each product has in common). So, the product engineer, the one who actually physically makes the product doesn't know the ingredients? Mind-boggling. Perhaps, just perhaps, things might have moved faster if this information was publicly available. I think that anything that is used in healthcare supplies should have to have a product ingredient list available to the public. Anything short of full disclosure can seriously impact lives, I'm living proof of that. 

What it looks like now

Meanwhile, I'm left in a bloody mess and last week managed to contract yet another infection in the open, bleeding, seeping wound. I'm in so much pain that I have tears rolling down my cheeks often. I suffer through hourly cleanings to try to prevent it from worsening and new infections from developing. Something needs to be done!

Next week I'll be going in for scopes to see what kind of internal damage this tube is doing to me. It's suspected that there's likely problems on the inside too given how severe the reaction is on top. There is another tube available, but they want to make sure that I'm not allergic to the materials of it, so they've referred me for patch allergy testing. Unfortunately, I got the worst news ever about that today, it's not until the end of June. I can't imagine living in this much pain until sometime after that appointment. See, that appointment is just the consultation, then I'll have to wait for the actual testing to be done. Help seems so very, very far away right now.

It's my hope that sharing this, even though it's graphic can help other people. I can't be the only one who has ever experienced something like this. Perhaps if my team is able to pinpoint the answer, then perhaps my story might help someone else who is experiencing this. I also hope that this can bring light to a bigger problem: the problem of full disclosure in healthcare. As someone who has to purchase products to supposedly benefit my health, don't I deserve the right to know what is in the products that I am using? 

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. 

Jacob's Song of the Day (3/23/2016): "Miracles" by Coldplay

Today I have chosen "Miracles" by Coldplay because to me it represents hope. Have a listen and read more about why I chose this song today:

"I've made it this far and refused to give up because all my life I had always finished the race" - Louis Zamperini, WW2 veteran and Japanese POW survivor.

Hope. What a wonderful thing that we incurably sick people cling to. We hope for better days, better treatments, cures. We hope for more understanding, more compassion, more kindness in a world that often just doesn't seem to get it. Hope is what drives us on, what keeps us waking up to each new day that passes. Hope is the exact thing that Miracles are made of.

I try to stay positive even though my health for the past 6 months has been on a downward spiral. In the past 4 years, almost every holiday and vacation has been spent as an inpatient at the hospital. I can no longer participate in Scouting, I haven't been to school for a full day yet this year so all of my friendships have also taken a beating. Even though I'm out of the hospital for now, I still find myself in a medical waiting room at least twice a week. My life has just done several strange trips through various wormholes and become something completely different than what I could ever dream up (or I guess in my case it would be nightmare-up?) I'm just growing more and more tired each day, when there's no real answers. I'm tired of the medical trips, the triple 'p' (pokes, prods and pain), the treatments that create new problems. So what is the one thing that keeps me going and inspires me to inspire others the way I do? 

Hope and miracles. What really keeps me going each day is the hope that I can make a difference. The hope that Jacob's Healing Rooms will help to make the treatment experience for other kids going through this a lot better. It's the hope that I can inspire at least one other person to do their own thing to make a difference in this world. It's hope that one day, we all can have a miracle.

I'm just a complicated guy... well, sort-of.

Round and round we go, where we'll stop, who really knows?! That pretty much sums up my day, my week, my life right now and since I was diagnosed with Crohns almost 4 years ago. Since that time, I've had a constant revolving door of doctors from almost every specialty involved because of the increasing number of health hurdles I've had to struggle through. I've seen GI, the dietitian, the health psychologist, the respirologist, the cardiologist, the electrophysiologist, and neurology. Today, I added a new speciality, endocrinology.

Since last June, I've been having a problem with my weight, which sounds weird because last June I was just starting to eat solids again after 4 months of only formula feed through my Naso-Gastric Tube (NG - a tube that runs from my nose to my stomach). But my weight kept creeping up. I went from 58lbs last February to being 124lbs this February, without even really eating anything! The doctors even stated that my weight had become a medical emergency because it had gotten so out of control. Hence the referral to endocrinology to see if there was something related to any of my hormones that was causing some of my health problems.

All of the endocrine tests have shown absolutely nothing out-of-whack with the hormones. Whew, so glad to hear that. But yet, that also means, no explanation as to what's going on.

BUT

The doctor declared that my weight loss in the last month has been "alarming". I have lost 7kg in the past month, which makes sense because I'm only able to take in about 2-3 bites of a meal before the nausea declares the meal has ended. Since coming off all of my anti-nausea meds for the past month, it takes everything I got just to try to get on with my day. It's interfering in just about everything I do. So the endocrinologist has insisted that we e-mail our GI nurse today to express concern about the weight loss, lack of nutrition, and nausea.

How we go from one extreme to the other is just completely mind-blowing. It seems that I like to do things either in a dramatic fashion, or not at all, at least as far as my health goes.

But the endocrinologist wasn't a total bust. For the past at least 6 months I've been having really bad pain in my knees, ankles and legs. It's actually so bad that to walk brings tears to my eyes most days. So the endocrinologist feels that we should seek a referral to the rheumatologist to talk about the joint pain issues. The wheel continues to spin around....

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.

The 'R' Word & Me: Remission

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

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

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

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

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

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

How a Bag Saved my Life

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

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

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

Mental Health and Chronic Illness

It's #BellLetsTalk day about mental health, and I've already posted about my experience with depression but I wanted to share more about how my physical health also has a huge impact on me and how I want to make this easier for other kids like me.

It's been almost 4 years since I had my first onset of a Crohns Disease flare. In reality, I'm still on that "first" onset since I've yet to achieve remission status. In 4 years I went from being an active kid who was always wanting to be on the go somewhere, to someone who rarely feels they have the energy to leave the house (at least much of the time). My entire life has changed. I can no longer participate in Scouting activities that I really enjoyed, I rarely have contact with my school friends since I've been too sick to go. I haven't had a birthday party in 3 years, and since I'm not at school, I rarely get invited out with friends. I've spent many of the past 2 years worth of holidays at the hospital. Over such a short time, my life has turned upside-down.

I'm completely aware of my medical situation. I know that I've exhausted my medical options for the moment and that how I'm feeling right now might be as good as it gets. I get angry at the disease, at what it's taken from me, and the treatments that I have go through because of it. I've had tears adjusting to living with tubes and bags hanging off of me. I've asked "Why me?" and go through periods of being jealous of my other "normal" friends at school who are living "normal" lives. I will never live a "normal" life in the sense that most people would consider normal. I've had to accept that my normal involves machines, blenderized meals, and medical equipment like my dancing IV pole partner.

I knew that I couldn't let this disease define me, that I needed to take all the negative that had been thrown at me and create something beautiful from it. When I first walked into the outpatient treatment rooms at the hospital for my first Remicade IV treatment (often an 8 hour day), I was scared and worried that this treatment too would fail. I remember walking into the room and being completely shocked at the emptiness, the lack of color or interesting distractions. I felt like I was walking into more of adult clinic instead of a major children's treatment facility. It was depressing. You felt a heaviness just walking through those doors. Let's face it, medical stuff is scary. As a child when you are looking at the thought of having to do these treatments regularly, it can be downright terrifying.

I decided to do something about this. I know from my time in other parts of the hospital, that having a supportive and engaging environment can make a huge difference in the physical healing and mental health of patients. I decided that the environment for the outpatient treatment rooms needed to change to help give a boost to kids' spirits and help to encourage healing. Jacob's Healing Rooms is going to help update the treatments rooms to make them child-friendly places of healing. I'm going to install tablets at each treatment chair, have the walls painted, distracting sky-panel covers for the lights and a sensory bubble tube machine in each room to distract and liven up the environment. I may not be able to make the disease go away, but I can help to make a difference in the lives of other sick children needing these treatments too. And in turn, that makes me feel like I'm making a difference, that I'm needed.

Today might be #BellLetsTalk day but let's not forget that the struggle that people living with mental health and chronic illness face is very real each and every day.

The Curling Community and Me

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

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

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

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



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

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

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

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

The Lovely World of Side Effects

To say I haven't been feeling like myself this week would be a great understatement. Kind of like saying that the Grand Canyon is "deep", it just doesn't do justice to the description. But first, the backstory...

So last Thursday I had my monthly scheduled check-in with GI, not to be confused with my weekly check-in with GI because of the other little hurdles that come up in between... Of course the main topic of conversation, as it has been for over the past year, has been the nausea and vomiting. I've been taking Ativan used off-label to help with those symptoms, and while effective at first, it's been slowly losing it's effectiveness. The doctor decided to try a medication called cyproheptadine on me, as it can be effective for cyclical vomiting.

This week has been a constant whirlpool struggle. I break down into tears, feel so sad, angry and confused all at the same time. I'm muddled, befuddled, and muzzy. But just as easy as the tears come, all of a sudden I feel on top of the world and excited about the newest scientific breakthroughs. But then, I drop down again and it feels as though the world is on top of me. And this cycle repeats itself several times a day. Clearly something is wrong, and since it all started with a new medication, I'm putting my money on it being a reaction to it. My doctor has asked that I continue with it for another week, to see if it's just an adjustment period or if it's due to the weaning of the Ativan. All I know is that it feels at times as though I'm in a state of complete blackness that I don't know how to escape from.

So I'm hanging on, hanging in, and refusing to hang it up. I'm shedding my tears and warming my heart with love and hope. Tomorrow might seem like so far away, but that's alright, because I can hold hope that the next moment is going to be better. This is how things are right now, but it won't always be that way. I just have to remember all of that during those dark moments. I need to remember that it's ok to cry, it's ok to feel bad, and even the strongest of us have our moments of weakness. And that's ok too.

It's Just Me and My Mickey

I spent the day getting to know my Mickey yesterday. No, I don't mean this guy:

Although I'm sure that spending the day with this guy might have been a bit more fun. Nope, my picture of Mickey is altogether different. I'll spare you that picture for now (at least until it's healed a bit more). I'm sure that the majority of you are really confused right now, so let me explain what the dickens I am talking about.

Last February I had to start on getting the majority of my calories through a feeding tube. This barbaric contraption that I loved to hate was put up my nose and into my stomach, since I had problems breaking down and absorbing nutrients, putting on/keeping on weight, and was vomiting daily (still am). I received ALL of my nutrition only through the tube from February to June and have been working on trying to rediscover foods since then - it's going horribly wrong. Food and me just have a difficult love-hate relationship. I love food, I want to eat food, but my body doesn't like me having food. It throws it's own form of an anti-food protest and I end up it's main victim. It sucks. Our society is so focused and based on food, I challenge you to name a holiday that doesn't involve food. Can't do it? Exactly. Now name a television channel I can watch without any reference in the shows or the commercials to food. Can't do it? Now you're beginning to see my pain. Everywhere I'm reminded of food. That's the worst possible thing you can be reminded of when all you want to do is hang your head over a bucket. And the holiday season? Let's just say that I think we need to create our own traditions that have nothing to do with food. So obviously, we have a problem.

The solution? Long term supplemental feedings that could be increased back to EEN (exclusive enteral nutrition) where all my calories could potentially be through the tube again if needed. There has been some evidence to suggest that the formula that I am on is beneficial to healing in Crohns Disease as pretty much a treatment itself, but they are unsure of why this is the case. However for some other people like me, who haven't gotten results from medications, elimination diets, etc, they have seen that sometimes a prolonged period of EEN helps to promote the healing. They did a set of scopes right before they did the EEN, and then re-scoped afterwards. Prior to the EEN, some of the doctors on my team were considering the potential of having my duodenum (first segment of the small intestine) removed, a major surgery with potential life-long complications. It's a surgery that none of us Crohns patients would want to have, even more so than the colectomy. But at that point my duodenum was a HUGE problem. When they re-scoped after the EEN feeds, the majority of the deep ulcers showed significant improvement. We were nowhere close to being in "remission" but it was at least a step in the right direction. So to continue with long-term nutrition, they decided that I needed to have a more permanent feeding tube put in, called a gastrostomy (GTube).

True, the GTube gave me back my face which had been covered "Phantom-of-The-Opera" style with medical tape to hold my NG tube in place. I had the GTube inserted November 19, and if you've been following my posts, you'll remember that I posted the "What's Eating Jacob?" story when an allergic reaction to the tube caused blistering, swelling, and internal bleeding. It was a painful time I'd rather not have to repeat at any point in my life.

Yesterday they finally swapped out the old GTube I was allergic to and put in a Mic-Key button tube. The experience was...interesting. I'm a kid who even after probably at least a 1000 blood tests in the past 3 years, needs their mom to shield their eyes from what the blood nurse is doing. Well, when they took the Mic-Key out, I got a good look at what the hole into my stomach for the tube looks like. I wish I could turn back time and wear a blindfold. Then the nurse has to measure by inserting a flexible measuring tube. She said that I have one of the longest tube "tracts" that she has even seen. The distance between the surface of my skin and my stomach is 5cm. It just so happens that the Mic-Key tube button, is only designed for tracts that are 5cm long or shorter. If I add more weight, I might not be able to have this particular design model. In any case, after much pushing to get it in through the stomach hole, it's in.

I was terrified yesterday. I didn't want this done, especially since I was really afraid of being awake for the procedure and it hurting. But I can tell you that it wasn't near as bad as I thought it would be. Yes, it hurts as they're trying to insert the new tube. You feel them really pressing down on your stomach to get it into place. It feels weird sometimes because since it's only being held by a water filled balloon resting on the inside of the stomach, you can feel it shifting. But after the first 30 or so minutes it gets easier.

As for the hanging out with Mickey, I'd still prefer the mouse guy but maybe this other Mickey won't be that bad.