Friday, May 20, 2016

#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

Tuesday, May 10, 2016

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:


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
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? 

Monday, May 2, 2016

Welcome to the Dark Side

I've been struggling to put these words down on paper. Struggling to get them just right, just perfect, just exact enough to tell a story that you will want to read. With the way my ADHD brain jumps from idea to idea at speeds that make warp speed seem like standing still, combined with my awesome perfectionism (I've mastered the art of feeling the need to be perfect) and my dyslexia, putting words to paper can sometimes be a very slow go. Especially when it's a part of my life that I don't normally share. And especially as talking about all of this brings a flow of tears. This is a post about life on the Dark Side.

Anyone who follows my blog knows that I don't normally share the darker side of my feelings. Why? One easy answer: I care what people think. I want to inspire others. I want to be uplifting. I want to help others see that there is hope, that there is light, at the end of the tunnel. Then I got to thinking about the reasons I blog in the first place; to help other people. Sharing our stories is a way of connecting to others, a way of saying "Hey, you're not alone, look at my story". Our stories, good and bad, are part of our journey and people need to see the good, the bad and the ugly. Life isn't all unicorns and leprechauns. Real life has the good and the bad with it, and sometimes the bad does feel like it overpowers the good.

In another month, I will celebrate an anniversary. It will have been 4 years since the onset of my Crohn's Disease symptoms. In two weeks, I'm going for my 16th trip to the Operating Room. Until that time, I'm trying to avoid my 8th major hospitalization. I can't even tell you the number of pokes, painful tests, painful procedures like rectal ultrasounds and painful treatments that I've had to live through. That seems like a lot but in reality, that's just the physical stuff I have to go through daily. There's also a lot of emotional stuff that goes on in the background.

In 4 years of treatments, I haven't caught a break. I haven't felt any major improvements no matter what combination of drugs the "team" throws at me. In fact, since November I would say that I have physically felt even worse than I did when I was so sick that I needed my bowel out. I have been living every day in constant tear-inducing pain, unable to get quality sleep, having severe problems with nausea and vomiting (I feel like I should carry a bucket with me everywhere I go for emergencies), and oh yeah, did I mention the pain?! Every week brings a new health challenge, and it's hard to know when, or if, it will stop. I get people saying "if it were that serious you'd be in the hospital" or "you must be feeling better since you've been to the doctor". Unfortunately, it doesn't work like that in healthcare. When you are a chronic patient, you get stabilized at the hospital and once things are stable, even if they are stable on the horrible side, you are released and wait for the next step on your medical plan. Going to the doctor doesn't always make things immediately better.

 I've been to see at least 1 doctor every week for so long that I can't remember a week without a doctor's appointment. Every time I see a doctor, I hope beyond hope that this will be the visit that will change everything. I hope for relief, for some type of improvement. I hope to be able to describe perfectly what is going on with my body. I hope for the doctor's to listen and believe me, and to be patient with me when I break down into tears as I'm talking simply because it's overwhelming to talk about every single little problem all at once. I know that my confusing, complex health problems are overwhelming for health care professionals, but they're also overwhelming for me to live with daily.

I know I'm going to live with Crohn's Disease for the rest of my life. There is no current cure for it (and yes, I've tried different diets, supplements, medications, meditations...). I know that I should say that "I haven't let it control my life", but to be honest with you, it sortof does control my life right now. I'm not sure how it couldn't. I've had to give up being a Scout, as it's hard to go out and do physical activity like rowing a canoe, or going on an hours long hike, when it takes all of your energy just to get out of bed. I haven't really been to school yet this year. I can't go into the classroom and throw-up on my classmates, and I fear my tears and yelps in pain would only distract my friends. I've been away from school for so long (most of the last 2 years) that I don't really have any "normal" friendships. My life has become a series of waiting rooms, and waiting for waiting rooms.  And waiting for treatments to work, or more accurately, waiting to find a treatment that does work.

Welcome to my Dark Side.

It's heavy. It's crushing at times. I ask "why?", I ask "what's the point?". I get angry, frustrated, and exhausted. I cry. Nobody wants a dark side, and it's not something that we just go up to a stranger and start talking about. It's definitely not a conversation starter. In fact, most people get uncomfortable when you even come close to talking about the negative side of chronic disease. The socially acceptable answer to "How are you today?" is definitely not "Horrible, thanks, and you?".  Yet that is the honest response. Some days I really don't have much to say that is positive, other than "I'm alive, breathing and with a heart beating". And that truth makes a lot of people uncomfortable. I don't mean to be negative, I just mean to be real. It's always okay to be the real you, and real people have real problems.

How do I combat the Dark Side? Purpose and Belief. There has to be some point to it all. I believe that all of my experiences have had to happen for a greater reason, that there has been a purpose behind the suffering. Jacob's Healing Rooms fundraising project gives me purpose. It lets me take the ugliest of situations, the worst nightmares, the stuff that the Dark Side is made of, and make something beautiful come from it. It's a symbol of my Light Side doing battle against the forces of evil. Doing something to help improve other people's lives is my way of taking back a little sliver of my life. Every positive word someone shares with me, lets me know that what I'm doing is making a difference. In turn, that makes my Light Side glow a bit brighter. That keeps me motivated to keep doing what I'm doing. It's one of the better cycles that I like getting stuck in. The Dark Side might be scary, but it's not the whole picture when it comes to who I am. It's simply a part of me that reminds me of where I come from. It reminds me of the mountains that I've already climbed, and that my scars are symbols of battle wounds. My Dark Side makes my Light Side all that much more brighter.