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

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

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

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

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

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

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

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

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

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

BUT

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

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

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

Jacob's Song of the Day (03/02/2016): "I Don't Wanna Go To Bed" by Simple Plan ft. Nelly

I'm taking a break from doing homework to get caught up on a lifetime of school work to bring you my song pick of the day: "I Don't Wanna Go To Bed" by Simple Plan featuring Nelly. Have a listen and read why I chose this song today:

I'm really liking Simple Plan's newest Album, Taking One For the Team. Hopefully one day soon I'll get to enjoy them live! 

Anyway, today's song was chosen as today is going to be a very long day and night for me. Just over 9 years ago, I went unresponsive in my mom's arms for 6 hours. The doctors could poke me with needles and run instruments over my feet, and I wouldn't move a muscle. I eventually came out of it, and after several EEG's (electro-encephelogram) to measure my brain activity, I was given the diagnosis of epilepsy. I really have a mixed bag when it comes to my seizures - I have temporal lobe seizures where I have odd physical feelings and I keep repeating the same word/phrase over and over. I have occipital lobe seizures where I get visual distortions. It's really not that great of a feeling when suddenly the room feels like something right out of Alice in Wonderland. I have absence seizures where I'll briefly "drift-away" and quickly snap back. Sometimes it makes people feel like I'm ignoring them when I don't immediately respond, so while they might be really quick seizures, they're not so great for the social skills, or receiving instructions, etc. Finally I have a few tonic-clonic seizures which is where my body can become rigid, shaky, I start to roll my tongue around in my cheek, I might arch my back so much that I could potentially go into the yoga bridge pose. Thankfully, these ones are few and far between. 

In May, I'll come up to the 2 year seizure free while on medication mark. After 9 years, this is a huge deal! To celebrate, my neurologist is going to start reducing my seizure medications. But first, there's a test that I must pass. 

Tomorrow I'm going for a sleep-deprived EEG. Because of my age, I need to be awake for the 24 hour time period before the test. When the body is heavily sleep-deprived there is more of a chance for triggering seizure activity. For a kid like me, who feels like going to bed by the time early evening comes around, this is going to be a challenge to stay awake! It's going to be a long day and night for sure! Thankfully I have my new Simple Plan CD and all my other favourites to keep me company overnight :)

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!

The 'R' Word & Me: Remission

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

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

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

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

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

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

How a Bag Saved my Life

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

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

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