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*

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.

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.

A New Battle Begins

Flashback - a year ago today it became clear to the doctors that food was not being my friend. I was having a lot of problems with vomiting and nausea (and still am) and my weight had dropped back down to only 58lbs. I was so tiny, my mom would say that they wouldn't need an xray to tell if I broke a bone. My medical team decided that I needed to have an NG tube inserted through my nose and into my stomach to get all of my nutrition. For the 4 months that followed, I was only allowed clear fluids to go along with my NG feeding formula. I never thought that giving up food would be so hard, but after awhile you just want to eat something solid again, no matter how bad you know it's going to make you feel. I think it's just a natural part of our instinct to want to have solid food. But food and I have a difficult relationship.

I have certain foods that are often triggers for my anxiety, which doesn't help with my menu selections. Then when we factor in what the Inflammatory Bowel Disease doesn't let me eat (anything leafy, stringy, acidic, etc) my menu choices get even more limited. But part of the problem is also that I've been having so much nausea and vomiting that even the thought of eating turns me completely off most of the time.

So how did my weight become what the doctors are now calling a "medical emergency" for weighing too much? That's the million dollar question that everyone keeps asking. Last June, when I hit 80lbs after the first 4 months of formula feeding, we had asked the doctor about weight but were told not to worry, that everything would balance itself out. But my weight kept climbing. I was gaining on average 4kg a month, which is amazing when you factor in that I wasn't eating enough solid food to keep a bird alive. Up, up, up my weight went. I went from wearing a boy's size 8 to now wearing a men's size small/medium. Everything came to a climax last week when the doctors saw that I was weighing in at 125.5lbs, much too much for a child my age. And it's a complete mystery how I managed to gain this much weight. My mom and I have been strictly calorie counting for several weeks and on average I'm having 700 calories a day, most days less than that.

So the doctors are now running more endocrine function tests to see if there is a physical explanation as to what is going on, and in the meantime I am on a very strict calorie intake plan from the dietitian - I'm allowed 1900 calories a day. Whoa. Wait a minute! I'm only taking in 700 anyway... So I was left completely confused with a calorie limit that exceeds what I currently take in by almost 3 times.

My mom decided to go out and buy me a FitBit Charge HR to better track my calories going in and out, as well as my heart rate and sleep so that we could have accurate records to show the doctor. So far it tells me that to lose the 40bs, I should be eating about 2100 calories a day based upon my heart rate and activity levels. And I'm still coming in at the most 900 calories.

The challenge now is to develop a new relationship with food. I've been trying out different recipes, trying to expand my menu. So far I've learned that I love mango chicken curry, and would rather eat dirt than my mom's Kung Pao Chicken. I wish I had a video clip of my expression trying that dish that night, it would have for sure went viral. I'm sure that with my mom learning to cook, that there will be plenty more opportunities to create some hilarious "Jacob tries..." videos!

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.

My Best Birthday Gift

Last week was such a busy week for me with all of the medical appointments that I'm just getting caught up on all of the wonderful birthday messages and love that was shown to me that day! It meant so much to have people all over the world show such thoughtfulness. I'd like to share one special act of kindness that was presented to me on my birthday weekend.

My Papa used to work at The Oshawa Curling Club and made many friendships with people there over the years. When my story made the newspaper, a few of the members of the club had seen it, and reached out to find out how they could help make my wish come true. A few members decided to take it upon themselves to bring attention to Jacob's Healing Rooms. My newspaper story was posted in a few areas of the club, and a big collection jar was placed at the bar. It was such an amazingly nice thing for them to do!

I haven't been able to have a birthday party in 3 years. My grade 5 birthday I had pneumonia and could barely blow out candles let alone host a party. My grade 6 birthday was when the nausea and vomiting started to be a huge problem. This birthday I was recovering from surgery #14 to place a GTube feeding tube, which we have learned I am allergic to and it will need to be replaced on January 7. It was a bummer that I couldn't have an actual birthday party yet again, but I decided to do something awesome with it and see if I could host "Jacob's Online Birthday Bonanza to Benefit Sick Kids". Why not turn a bad situation into something a bit better?

Hearing that it was my birthday, they decided it was the perfect time to give me their awesome present. Together, the Oshawa Curling Club members raised an amazing $711!! My birthday wish goal amount was to see Jacob's Healing Rooms reach $8000, and thanks to the outstanding generosity of the members, I was able to reach my goal, which was the best birthday present I could have asked for!

Thank you for everything that you all have done. This dream of mine can only come true with the kindness and generosity of others. I know that together we will be able to bring some smiles to these kids faces and make treatment days brighter! I can't wait until I can come and thank you all in person next month!

"What's Eating Jacob?" - the saga continues!

Can I get the last week of my life back? Please? What a week it has been! And I've had many other things that I could have been doing rather than sitting in different waiting rooms. Like Christmas shopping. Oh, wait a second, I wouldn't have been doing that anyway with the way I'm feeling. I'd become part of the display shelves in no time at all and "crash, bang, boom" it wouldn't be pretty.

Tuesday was the day I had been waiting over 3 weeks for , or basically since they inserted the GTube (gastric feeding tube). Nothing has been right since that day. A recap of events: Surgery #14 was to insert the feeding tube since I'm not able to eat a whole lot of "real food". Two days after the insertion I got a wide-spread rash across my belly. They did skin biopsies (I don't even have to tell you how not fun it is to have someone stick a needle over 9 times into your nerve-sensitive belly), and the biopsies came back normal for the chicken pox/shingles they thought it might be. I came home from the hospital. Then we discovered that wherever the tube was touching my skin was blistering so bad that you could see an indent in my skin where the tube had "eaten" a trough. Kinda cool, since it started to form a sun ray pattern around the GTube hole, but very painful. Then the hole itself started to get extremely sore, so much that it hurts to stand-up with the weight of the tube pulling on it. This hole then started to look infected, but it was quite clear by this point that I was reacting to the tube materials (the blistering to the skin stopped when I put a layer a skin protector down below the tube). So the GTube team thought it best to come in and see whatever doctors needed to be seen to solve the problem.

Tuesday couldn't have come fast enough. The constant itch, the pain, the nerve sensitivity. It's making me tempted just to rip the tube out myself. The wonderful GTube nurse checked me out and agreed that it sounded like an allergy to the tube materials, as did the general pediatrician she called up to take a look. GI and radiology agreed that it was likely a tube allergy and that I was probably reacting inside the stomach and tube tract as well, which was causing the pain. But they didn't want to give me anything for the pain because it "could cause you to develop toxic megacolon". Ummm, did someone forget to read my chart for the part that says "subtotal colectomy"? I can't get toxic megacolon without having a colon! But whatever, I'll deal with the pain, just get the tube out of me. Radiology agreed that if no one had any ideas to fix the tube area, that they would switch it out next week for me since they can't do a replacement any earlier than 4 weeks because they could "damage the tract". Then along came someone who didn't completely agree with the assessment which changed the whole plan. Dermatology initially said that it looked like a tube allergy rather than just a skin infection, skin breakdown. They said that we should likely do some skin rubbings to see what materials he is reactive to before we go ahead and put in a new tube. Then they ended the conversation with "but we don't think it's an allergy". That completely left us in limbo land, a place I don't like to be. General pediatrics has sent me home with Atarax (a heart-safe anti-histamine) which has really helped bring down the swelling. They also sent me home with a warning that if, as they suspect, my stomach is reactive to the tube, we might see sudden bleeding and to get our butts back to the hospital if it happens. Great, love warnings like that. So, the next important GTube date will be January 7th. We'll be switching my tube into a Mic-key button which sits right flush with my skin (think about a beach-ball opening to put air into - same idea). I really hope I'm not allergic to this one!

But more than being allergic to the new one, it's disappointing that I'm still in a lot of pain. It's disappointing that I'm looking at the Christmas Holidays approaching and I'm begging time to stop because I'm just not up to celebrating. I have a feeling that this is going to be a "deja vu" Christmas where I spend the day exactly where I spent it last year:

It's going to be Deja Vu alright!

Jacob's Song Pick of the Day (11/12/2015): "It's Not That Easy Being Green" by Kermit

Oh what a life this is. Today I picked the song "It's Not That Easy Being Green" by Kermit the Frog. Have a listen and read why I chose this song today:

Acceptance. How do you accept that you are who you are, faults and all, when everything seems to go wrong? How do you accept even the most horrible of situations, at the worst possible time of year, when all you want to scream about is how unfair it all can be? 

Surgery #14 to put in the GTube (feeding tube into my stomach) was now 3 weeks ago. What the doctors initially thought was possibly the chicken pox/shingles virus is turning out to be something somewhat nastier - a bad allergic reaction to the feeding tube materials. Each bandage change is showing more and more "damage" around the feeding tube hole, so yesterday my mom decided enough was enough and e-mailed pictures of the situation to the GTube team, who now also thinks that I might be having a significant reaction, and fears what type of reaction might be happening on the inside where we can't see. A very scary thought considering I have a lower immune system thanks to the immuno-suppressing drugs that I'm on. She then sent the pictures and the message along to the pediatrician who became alarmed and decided that I needed to be seen by several specialities (GTube team, general pediatrics team, dermatology team, GI Team). I really wanted to spend my birthday with my sister though, so they've let me stay home until Tuesday. 

But...

If they think that I might need to have a new tube inserted right away, or if an infection happens to develop (I'm at high-risk with an open-wound and this being nasty-infectious season), than it might mean spending Christmas in the hospital this year. I'm trying to stay hopeful but I also know that things can't keep going the way they are and I'm feeling worse and worse by the day. 

I am who I am and my body is what it is. I'd be perfectly justified in throwing an earth-shattering temper tantrum right now and scream about the unfairness of the world. But what would that get me? Yes, I complain. I answer truthfully when someone asks me "how are you?" even though it might not be the acceptable answer of "Fine thanks". I'm not fine. But I'm working on it. I'm holding on the best I can, trying to ignore the worries, the pain, the unhappiness of potentially spending yet another holiday in the hospital. Acceptance of "what is" is the only way to go. It's the only ticket that we have to our "happy ever after" party. 

And trust me, we will one day be having a huge "Happy Ever After" party. There might be no light at the end of the tunnel right now, but I think if we keep going we just might see the smallest glimmer at the end. 

I leave you with my favourite part of the song:

"When green is all there is to be

It could make you wonder why, but why wonder? Why

Wonder, I am green and it'll do fine, it's beautiful!

And I think it's what I want to be"

Mystery Solved... Maybe?

Everyone loves a good mystery, except when it's a medical mystery involving your own self. It's been 2 weeks since I had my GTube (gastrostomy feeding tube) put in and developing a mystery rash across my belly that no one could really identify. The little spots covering my whole belly area are starting to clear up but then something happened - I started blistering. I thought the rash was painful, but the blisters are .... ouch. What could possibly be eating Jacob?

Yesterday my home nurse came for a visit to close my file since my mom is ok with all of the nursing, and she's pretty good at it. The nurse looked at my GTube area and she noted that the blisters are in a pattern that follows along with the movement of my GTube itself. Wherever the GTube touches my skin, I get a blister. It's so crazy that in less than 24hours the tube will actually "eat a little ditch" through my skin and be stuck to me. And that's each and every night.

We're going to test out the theory that I'm allergic/reactive to the GTube materials. We've put down a piece of Skin Protectant Tape between the tube and my skin. If no new blisters, then I'm pretty sure we can say that it's more likely to be an allergy.

My doctors often refer to me as "the mystery" because if there is a very slim chance of something happening, it would happen to me. Seriously, I'm not being dramatic. There was a tiny chance I had Crohn's and not Ulcerative Colitis as they originally thought, and it turns out I had Crohn's. Then there was a tiny chance that I would aspirate the NG Tube Feeding, and I did ending up with pneumonia. There was a <20% chance that I would develop psoriasis as a reaction to the Remicade, and I did. And there was only like a slim chance of being one of those patients who don't respond to any therapies. I'm one of those patients. And now this comes up with the GTube. I know it must be frustrating for my doctors, I know that it's 100% frustrating for me and my family. But life happens in the most unexpected ways. Hey with the odds I have, perhaps I should start picking lottery numbers for people!

I can't wait to be able to go in to the hospital and announced that I solved the great mystery of "What's eating Jacob?".

What's Eating Jacob? - Surgery Recovery Update

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

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

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

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

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

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

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

Everything Changes - Jacob's Health Update

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

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

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

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

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