Thursday, April 28, 2016

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*

Wednesday, April 20, 2016

Jacob's Song of the Day (4/20/2016): "Invincible" by Hedley

So.... last night I went to see one of my favourite bands, Hedley, who I've now seen a total of 3 times, although it really does seem like I've seen them more. Listening to one of their older songs, "Invincible", really jumped out at me and I looked over at my mom and said "that's tomorrow's blog post". So have a listen and read why I chose Invincible as my song of the day:

I had a hard time picking only one part of the lyrics to share with you, the whole song is pretty meaningful to my life, but this is what I ended up choosing:

"This time / I'm a little run down / I've been living out loud / I can beat it, beat it / That's right / 'cause I'm feeling, feeling / Invincible"

The last several months have been among the most difficult of my life. Yes, what I'm going through now feels even worse than at the time that I had my colon taken out because of the severity of damage from Crohn's Disease. My body is simply falling apart, or at least it really feels like that most of the time, and the doctor's are kind of at loose ends grasping for straws that could help me get back on my feet, back being a kid again, and back into the game of life. I'm learning patience during this straw grasping game. What other choice is there? I wait for tests, for more surgeries, for more specialists to get involved, to get answers that MIGHT help. I've learned to hold no expectations, which to some might sound like a very negative thing, as though I'm giving up hope. But rest assured, this has nothing to do with hope. I still cling to that like a lost soul in the Gobi desert. What I mean about holding expectations is that I have no expectations that tomorrow will be better, or that my doctors will come up with the miracle, that researchers will find a cure for my disease. If you hold expectations like that with a chronic illness, you get disappointed real quick. Especially when you have such a severe form of the disease, that there are very few treatment options left. Instead, when something goes right, it's now become a pleasant surprise.

Last night was physically the second-most physically exhausting concert I've attended, right after the Train concert where I was rushed to the hospital before Train even took the stage with a major heart event. Despite having eye pain from suspected uveitis (waiting on the opthamologist appointment), extremely painful joints, my GTube allergy that I'm fighting, a painful hernia in my stomach, and vomiting over 40 times, I managed to stay for the whole concert, even if I wasn't able to get up on feet and dance my heart out.

That just shows people just how invincible this kid is. 

Oh, and how did I like the concert? The music was great but I didn't really get to see much of the performance even if I was only 6 rows back in the stands. Instead, I learned that when I'm sitting at a concert (and I have no choice but to sit right now) that I'm the perfect height for the people in front of me to stick their butts in my face. That's the view I had for all of Hedley's performance. Hopefully the next time around, I might actually be able to see the concert. Or even better, I might be able to actually be on my feet dancing.

Friday, April 15, 2016

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. 

Tuesday, April 12, 2016

The Ultimate Deception

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

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

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

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

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

Last February, I could no longer tolerate solid food, so the doctor put me on complete bowel rest and I was fed through an NG tube running from my nose to stomach. I finally really looked the part of being sick with this tube taped to my face. People stared, they asked
questions, they offered to give up their seat on the train at rush-hour so I could have a place to rest. They treated me a whole lot differently and it was only the tube that caused this change. People often let us go in front of them in a line-up. The train gave us a discount because they could visibly identify me as a "person with special needs". At concerts, the staff of the venue would ask us if there was anything we needed to make our experience more enjoyable. People could see that I fit their belief of what a sick person should look like and treated me different.

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

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