#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? 

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.

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*

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.

Why Giving Matters to Me

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

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

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

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

The Ultimate Deception

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

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

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

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

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

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

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

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

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