Happy 4th Ostoversary to Me!

"Absolutely not going to happen" - that was my response just over 4 years ago when an ostomy nurse told me that most kids who end up having a surgery to create an ostomy end up not even thinking about the fact that they have a bag attached to them for collecting waste. There was just no way I could ever wrap my mind around the idea of what it would be like to have an ostomy bag, so thinking that I would come to not even think about it at all one day... it seemed impossible.

I have severe Crohn's Disease, a form of Inflammatory Bowel Disease (IBD) for which there is no current cure. At the time I needed to have ostomy surgery, I was only 6 months into my diagnosis and nothing the doctors threw at me was working. I was taking handfuls of pills all with the hope of achieving remission, but I would still be at the hospital weekly due to the heavy bleeding. The doctors thought that I had Ulcerative Colitis at first, another form of IBD, and since the inflammation was limited to my colon and rectum, they felt that having a total colectomy (removal of the colon) with an ileostomy (creation of an opening on the outside of the body using the ileum for waste disposal), would be my best chance for regaining my life outside the hospital. I was ready for the surgery but was it true that I would one day come to accept having an ostomy so completely that I would forget about it aside from times of emptying the contents or changing the bag?

I thought that I would be aware of my ostomy every second of every day. Aware of this bag of poop hanging off of me constantly. Aware of being different and at times looking different. Aware of other people's reactions. When people asked me about it, would they get grossed out and treat me different? Would people not want to be near me in case it suddenly exploded, or because they think I might smell (which I can tell you, other than when I have a "code brown accident" there is no smell)? I'm pretty sure that anyone my age who has had this surgery has had similar questions as well. Most kids would have had no idea what an ostomy was, and what it would mean for their day to day life. And not knowing creates fear and anxiety.

Today marks my 4 year "ostoversary". 4 years ago today, I had my colon removed and donated to research, and started pooping into a bag. I was scared being wheeled in to the operating room, my life was about to forever change. I wanted to feel better, to be back to doing the things I enjoyed, but I was nervous about what it would look and feel like afterwards.

The first time I saw my "stoma", the part of my insides now sewn to my outside, I was grossed out. Those first days and weeks, I worried a lot about the bag suddenly falling off, or stuff getting trapped in my new exit and causing new problems. I worried about it being touched in the cleaning process (it doesn't hurt), and dreaded having to do changes every few days for it.

I don't know if it happened over night, or if it were something in the making, but one day I realized that I wasn't actually thinking about it. When I think about how much time I would spend these days thinking about my ostomy, other than emptying it or changing the bag, I would say that I don't think about it. At all. My ostomy has become my normal, it's something that I will live with for the rest of my life, or until Crohn's is cured, which is ok with me. Yeah, it sucks to sometimes have these giant ostomy fails, like when my bag starts to leak and I have no place to go to change it, but I don't find that I'm worrying about those accidents that much anymore, because they just don't happen as often as you imagine when you first start thinking about it. In fact, most of my fears have been completely for nothing.

My ostomy is my bag of honor, it's a symbol of having gone through a very challenging time and having come out on the other side. It's a symbol of strength, of having overcome some of the hugest hurdles life can throw your way. My bag saved my life and taught me that sometimes you just need to believe that it's all going to turn out ok. Yes, it takes time to adjust, but that's true to most things in life. But life does go on, that I can promise you. My name is Jacob and I am an ostomate.

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. 

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!

How Not to Recover From Surgery or How I ended up in Quarantine

I have to admit, I have style. I don't do anything the easy way, and when I do something, I commit to it 100%. Day 2 of recovering from surgery to get my GTube placed didn't go as planned, even if it did start off with the idea that I'd be going home today (day 3), plans can go horribly wrong.

It started off with just normal recovery pain and the day went downhill dramatically from there. In the morning, my mom noticed that I was started to get a rash across the belly. The doctor wasn't sure if it was some irritation from the surgical soap, so we took a wait & see approach. We still planned on going home.

The afternoon came, as it tends to do since it follows the morning, and the rash has now spread to the other side of my stomach. Not only that but I'm having a lot of sinus tachycardia. It's now starting to get to be a bit more of a concern, and the nurse mentioned it to the doctor but the doctor still felt that it was a reaction to something.

Finally, the evening comes. The rash has now taken over most of my abdomen. The nurse put in a call to the general pediatrician team to come have a look and when they do the last thing I expected to hear is what I heard: We think it's chicken pox. 

The doctor gave me a dose of Benadryl to try to calm the itching and rule out an allergic reaction. The rash didn't react to the Benadryl, but my heart sure did. I became extremely dizzy, feeling like I was going to pass out and shaking. I later found out that Benadryl is a potential "conditional" medication for a prolonged QT rate of the heart, which is a fancy way of saying that given the right circumstances, the medication may put me at higher risk of having a "heart event". Benadryl is so not a good idea so I lay here rubbing my itchies on the bed.

By 2am, the doctors has been in to look at the rash about 4 times. They decided that I needed to have skin biopsies done to test for infections. At about 3:30am they took a needle and poked about 8-9 different spots that I had in hopes of getting a sample with enough stuff that they could test. Then they had to send for the IV team to start a new IV after I blew the other, and to get bloodwork at the same time.

4:30am and the IV team showed up, they were able to finally find a vein, which was really exciting for me. They immediately started acyclovir, a powerful anti-viral because I have very little of an immune system left thanks to the medications that I'm on.

By 5am I was finally moved to the quarantine ward as they wait for answers to the question that's on everyone's mind "What's eating Jacob?". Since I was moved to a different ward, of course that means a new team and a new intake which ended with the nurses saying that we could expect some company at 7am to do a nursing shift-change. I think this was about the point in time when I realized that day 2 & 3 were just going to be one very, very long day. I'm obviously not going home today.

I've been vaccinated against chicken pox. Unfortunately for some kids who have been immuno-suppressed like me, can lose their antibodies to the vaccines they have had. This is why it's so important to have vaccinations. Chicken pox might seem like a common everyday illness for most kids, but for kids like me it can be dangerous. My heart hasn't settled down yet so I'm still hooked to the monitors, and the pain in my skin has been awful. The antibiotics used to treat the virus could quickly lead to dehydration which wouldn't be good for my heart. There's nothing simple about this "simple childhood illness" for me.

I may have come for the tube, but I'm staying for the quarantine.

The Day After

I'm alive, or at least that's what my heart monitor tells me every nanosecond that it beeps. It's been a VERY long day recovering from surgery #14. I've actually been up since about 3am, you have to love when you just can't get comfortable. I've been in A LOT of pain and today's busy activities didn't help any at making it better. 

Early this morning they decided that they would do my ultrasound to check out my bottom. Well, apparently checking out your bottom really means directly checking out your bottom with the wand. Without anything to relax you, or for pain. I have a new "most dreaded" hospital procedure (and anyone who knows me knows how much I hate the NG Feeding Tube). The kicker was that they couldn't get a really great visual on it because of the pain during it and not being able to get the probe into a good spot to have a good look around. But I guess the doctors saw enough because they said they didn't see a reason why I was passing so many blood clots. Awesome that you didn't see anything in there, but I'd love to know why I can't sit or stand without a lot of pain and pressure, and why all of a sudden for the first time in 3 years I'm passing clots.... things that make you scratch your head and wonder. 

I was in sooo much pain after the ultrasound, I had tears streaming and was crying out in pain the entire time. 

Then came time for the dressing change over the GTube (feeding tube) site. I forgot exactly how much it hurt to have dressing changes done. I've got two more to look forward to tomorrow. I'll try to hold back my excitement about that. 

I finally was able to get some Tylenol for my pain in the late afternoon, but truth be told, it didn't do anything for the pain. I'm trying so hard to pretend to be ok, I've told them that I've been in severe pain a few times today but have to try to get used to it on my own. I'm really hoping it gets better. 

Operating Room Trip #14 - I came, I saw, I got "tubed".

Today is the first day of the rest of your life. It's weird going to bed and knowing that your entire life is going to change the following day. It's strangely exciting and worrisome at the same time. Today is going to help improve things in my life.

One of the problems with Inflammatory Bowel Disease (IBD) can be some pretty stellar weight lost. I don't recommend this weight loss plan though. I've had 4 hospitalizations in 3 years because of my nutrition and weight loss, which can happen pretty quickly when you have problems getting food in and digesting it. Because my Crohn's Disease is the worst in my stomach and duodenum, daily nausea and vomiting have been a huge issue for me, and I have a hard time digesting foods properly. Which also means I'm not getting the full nutrient value of the food. If I don't get the nutrients, I can't grow correctly. Sometimes when I am having a really bad flare of my Crohn's (above my normal flare), the doctors take away solid food and I get my nutrition only through my feeding tube. This helps to give my stomach and small intestine a chance to heal. Since February I have had tube feedings daily through a Naso-Gastric (NG) tube, fed up my nose and into my stomach. It's one of my most hated procedures. I'd even rather have bloodwork. It's not that it's painful, it's just the feeling of it going up the nose and then down the back of your throat. Ugh, heebie, jeebies.

After 9 months with an NG tube, we've decided that nutrition is going to be a long-term problem. Today I took the step of allowing them to surgically place a gastrostomy tube (GTube). It's kinda cool since it's like a body piercing, only it's in my stomach and has a tube sticking out the middle. The "hole" will heal to form a tunnel straight from my skin and into my stomach. Awesome science at work. But it also means that I have something else taped to my body other than just my ostomy bag.

Surgery went well. The doctors still called me "medically interesting" because they couldn't place the tube in the usual spot because my rib was in the way and my stomach was too far over. So they had to place it more in the middle, but that was the only glitch today. My heart's running fast tonight but they're watching me closely and cardio is supposed to come around and have their poke and prod with the rest of the medical gang.

Today is the first day of the rest of my life and I'm quite excited about that future. I was able to see my favorite clown who came by for a visit and he heard about my $1 donation campaign for Jacob's Healing Rooms to make child-friendly outpatient treatment rooms and gave me a donation! It helped to lift my spirits to still be working on my fundraising even while recovering from surgery.

Speaking of recovery, the pain is starting to hit. It's time for me to get some much needed rest finally.

Huge Hugs Going to Everyone!

Taming the Dragon - Health Update

The thing about living with severe, refractory Crohn's Disease is that it's relentless. It doesn't give up because I'm tired, it doesn't go away because it's decided that I've had enough. It's like this dragon that's always sneaking around inside and starting fires. Some fires get put out but others grow and smolder. We can try to calm the dragon down, but he likes to get angry real quick and often at the worst possible times. I wish that I could just put the dragon on the time-out chair and tell him that he can't come out until he agrees to play nice. Only in a dream world.

Last week's GI appointment was better than one before, at least we agreed on my diagnosis (I do 100% have Crohn's Disease) and that we would NOT be talking about a reconnect surgery (reversing my ostomy by building a JPouch inside me to collect waste), at least not anytime in the next several, several years. There was more inflammation found on this set but at least it's not back to the epic level of disaster that it used to look like inside me. Still not great and not the level of healing that they were hoping to have seen.

We've entered a new phase of my Crohn's journey. The doctors have now moved to symptoms management. What does that even mean? It means that there isn't much more they can medically do to get me into remission, so we're going to try to get some of my symptoms under control. I'm not sure how I feel about this statement yet. I want to feel better, which means that we have to manage my symptoms but I want what's causing my symptoms to go away in the first place. I know that we aren't going to be able to cure this for me right now, there is no cure for Inflammatory Bowel Diseases, but I want to go into a period of remission like I see my other IBD friends having. I'm realistic though and looking at the reality of not having achieved remission in 3.5yrs, I know it's not likely to come along anytime soon. But I still dream of it, hope of it, and try to imagine what it would be like. In the meantime, I do need symptom control so that I can get back some quality of life. I need to be able to get back to school, see the friends I haven't seen very much of in almost 2 years. I'm looking forward to getting some of these symptoms under control!  Hopefully we can make the dragon a bit happier.

I guess the first step of that will be later this week with Operating Room trip #14 to get my permanent feeding tube put in place.

The Importance of an Accurate Diagnosis (Crohn's & Colitis Awareness Month)

November is Crohn's & Colitis Awareness Month. I had never known exactly what Crohn's & Colitis was until I got sick. There's still a lot of confusion out there in the community as to exactly what it is. And it can be a confusing disease to diagnose. It's like a giant game of "What's Eating Jacob This Month?" and I'm the reluctant guest star.

Crohn's Disease and Ulcerative Colitis are known as Inflammatory Bowel Diseases (IBD). Ulcerative Colitis is diagnosed when the disease effects the colon and rectum, but if the disease is elsewhere in the digestive tract, it's Crohn's Disease. These two conditions are often mistaken by the community as IBS - Irritable Bowel Syndrome - (maybe because the acronym is one letter away), which can cause some similar symptoms to IBD. However in IBS, there are often no changes to the lining of the GI tract, you don't tend to see ulcerations develop, the blood inflammation markers don't often go skyrocketing, and it shouldn't cause you to pour blood. IBD is in part thought to be an auto-immune disorder, where my body is literally attacking itself. So why is this disease so hard to diagnose? 

For me, I've always been somewhat on the small side, but I was born in December so of course I'm going to be smaller than my classmates. I never really had any huge problems with my guts until one day I woke up in severe pain in my stomach. Then the washroom visits started. In those early days, we would joke about moving in a bed to the bathroom, it was that bad. Yet, it really wasn't a joke because I honestly was there that much. I knew something was wrong immediately because I was bleeding pretty heavily when I went to the bathroom. The doctors at first thought that maybe it was a flu, or a bacterial infection. One time a doctor even suggested that I go home and drink water! About 3 weeks after my symptoms began, it got to the point where it was clear to even the doctors that I was quite sick. An ultrasound and xray showed that my ENTIRE colon was heavily inflamed, a condition known as pancolitis. To confirm the diagnosis, I had my first set of scopes done in July 2012, and the doctors diagnosed me as having severe ulcerative colitis, and my colon was toxic. 

So why did they diagnose me with Ulcerative Colitis when I now have a Crohn's diagnosis? According to the tests done at the time, and on about the next 3-4 sets of scopes, my inflammation was located only in the colon and rectum. The biopsy reports did not show any of the cells that were more consistent with a Crohn's diagnosis, like granulomas. The doctors were 99.5% sure by the time of my total colectomy surgery that I had Ulcerative Colitis. Out came the colon after all the medications failed to make a difference. 

Things never got better after the colectomy. I kept bleeding, now into my ostomy bag because I no longer went to the bathroom the normal way. 5 months after the surgery, I went back in for more scopes and biopsies. They found that my stomach and duodenum (the first part of the small intestine after the stomach) were heavily inflamed and the duodenum was extremely sick looking. Even then they were reluctant to call it Crohn's until we did a strict 6 month gluten-free diet to rule out Celiac. 

I couldn't ever go longer than an hour, two at the very most without a bathroom trip. I thought at one point I should name the toilet because I was spending so much time with it. Eventually, after 6 long months and 1 Gene Testing later, I was diagnosed with Crohn's Disease when the inflammation failed to get better.

I had just turned 9 when all of this happened.

If there had been an accurate way of diagnosing me right from the start, would that have changed my treatment course? Would I still have a colon? The answer in my case is, probably not. Treatments for Inflammatory Bowel Diseases tend to be the same no matter if you have Ulcerative Colitis or Crohn's. There are some medications which show more effectiveness at treating one or the other, but when it comes to the "BIG" treatments (Remicade, Humira, etc), they're used for both of them. My colon would have had to come out. It was so heavily diseased and damaged that it would have only meant more pain and hospitalizations until eventually it led to surgery anyway. By that time I had had 3 major hospitalizations greater than a month, so I was ready to try to be a kid again.

So why, if the treatments offered aren't going to change regardless of diagnosis, do we need an accurate way of diagnosing between these diseases? Because for other kids (and adults too!) it could make a difference to surgical plans. When a person has their colon removed for whatever reason, there is another surgical procedure that can be done once the person's health is restored, called a JPouch surgery. This involves taking the end of the terminal ileum/ileum (the last part of the small intestine before the colon) and creating a "pouch" that acts like a colon. The person than goes to the bathroom normally again. However, the key word to having this surgery is "healthy". For a person like me with Crohn's Disease, I could develop ulcerations at anytime, anywhere in my digestive tract. If I developed these lesions in my pouch, there is a very real possibility that I would have to have surgery to have the pouch taken out, and I would lose even more intestine. Not ideal. I've already consulted with a surgeon about this surgery and was told a very strong "NO" and basically to run from anyone who says that they would do it. Since I have been in a Crohn's flare for 3 years, I would not be a candidate for this surgery.

But, for other kids the type of surgery they do could be decided based upon which disease they have. For a kid with Crohn's but who has inflammation in the colon, they might just be able to do a resection of an area rather than a colectomy, which might help the child avoid an ostomy bag for life (not that there is anything at all wrong with an ostomy bag, but if it can at all be avoided why not take these steps?!).

Research is getting closer to finding out what is causing IBD to develop, but it's not quite there yet. I strongly believe that once we can find out what goes in to causing IBD, we can then find better treatments or a cure. In the meantime, it's important to inspire all people living with IBD (and other chronic illnesses) to keep up the hope even when hope seems slim. Keep fighting even when you feel like you don't have the strength. Keep focused on the light at the end of the tunnel, we will beat this. 

A Game of "Telephone" and it's for sure Broken!

For those who are new to Jacob's Healing Rooms - I'm Jacob, I'm 11 and I live with severe Crohn's Disease (as well as a few other medical conditions) and an ostomy. I'm told that my disease is refractory - meaning that it doesn't respond to the treatments they've tried. Yesterday was a trip to the OR to find out if the Stelara injections I'm taking in hopes of ending my 3.5 year flare, and to hopefully get an explanation for the increased Crohn's Disease symptoms I've been having since late spring.

There's a game in kindergarten that we used to play called Telephone. Person 1 would come up with a "message" and the message would be whispered from one kid to the next until it got back to the teacher who would say it out loud. It was very rare that the message was the same as the original version. One of the downsides of having a lot of different specialists involved in my care, even within the same department, that there is a greater chance for errors in communication to take place. Communication is key to improving my health. For example, a few of the dermatology drugs can be used in Inflammatory Bowel Disease treatment, so any changes my dermatologist wants to make for my psoriasis could impact on the IBD, and vice versa. All of my treatment providers (neurologist, cardiologist, dermatologist, GI, dietitian, pediatrician, surgeon) need to be kept in the loop as to "what's going on with Jacob this month". Even within the department, I rely on my messages to be relayed accurately to each member of the GI team involved in my care (nurse, fellow, GI). But the more players involved, the more this line of communication has the potential to be messed up. It happens more than you would think. Friday's Operating Room trip is the perfect example of the necessary information being relayed accurately.

Things started well. The blood lab had the forms for the requested pre-op blood work, so, all was going as planned. I got ready for the procedure and was waiting for the OR nurse to do my final pre-op assessment. When she arrived she read off the chart "so you have a diagnosis of Ulcerative Colitis". Umm, no. I have a diagnosis of Crohn's Disease, which is an Inflammatory Bowel Disease like Ulcerative Colitis but can effect the entire digestive tract from the mouth on down. Ulcerative Colitis tends to be restricted to only the colon, and considering I haven't had a colon for almost 3 years... I have Crohn's. I'm sure it was a sign of the way the day was going to be. Thankfully, my mom has more patience than I do and politely corrected the diagnosis.

Then it was time for the GI doctor that I've never met to come out to talk to me about the procedure. Not that I need to have it explained, I've been through it only a dozen times. Literally. You know it's going to be an interesting day when the doctor doing the procedure had the wrong reasoning relayed to him/her. "So you're here today to have a look to see if we can do a reconnect surgery (JPouch)". Whoa. Wait a second. At no time in the past several clinic visits have we talked about the JPouch surgery. It's often not recommended for people who have severe, uncontrolled Crohn's Disease because if you develop Crohn's in your JPouch, you'll be losing more intestine (and we need all the GUTS we can get. Get it? - Sorry for my sick sense of humor). In fact, when we had looked at this possibility over a year ago, the surgeon had said that he would NOT do it and would highly recommend that I don't find someone else to do it. It was absolutely confusing to both my mom and I why we were all of a sudden talking about a surgery that has been turned down and never again discussed. What really should have been communicated is "we are here today to see how well your medication is working for you and to see if we can find an explanation for your continued symptoms". That's only a bit different than the surgery reasoning. Then, the doctor had asked to have my NG (nasal-gastric) feeding tube to be replaced which I was under, because I have extreme anxiety of anyone shoving anything up my nose and into my stomach. No Ng Tube was sent down to the OR, so they had to go hunting one down.

I had the procedure and the OR Nurse in the Recovery Room prepared my Discharge Notes. There was a key piece that hadn't been communicated - I was supposed to be admitted after the procedure for cardiac observation. The nurse had to call around to find out if this was indeed the actual plan.

When I did get to my room, there had been a lack of communication in ordering my Feeding Tube formula, so I had to go without. Not really a big deal, since I went home the following day, but if the original plan had been followed through on - to keep me for a few days after the procedure - it would have been more of a deal.

Communicate - the act of sharing messages between individuals. It's one of our basic human needs. In healthcare it's an absolute necessity. I rely on my healthcare providers to help me get back to being the best Jacob I can be (at least physically). If the communication within the department and then with other doctors isn't accurate, then it's my health that suffers. I need my specialists' medical help. I need them to communicate their plans to me in detail and with other departments that their changes might effect. I need to be able to participate in my health care and communicate my experience, since I'm the one living this disease. And I need to make sure that my experience is really heard.

I'm trying to stay positive. I'm trying to focus on the bigger picture. I'm enjoying working on my fundraising project and making some really great friends along the way. And that's what the bigger picture is all about - seeing the world and the difference that you can make and going for it. Hopefully I'll have a better health update soon!

And a HUGE THANKS to everyone who continues to offer me their support. It means everything. It really does. Every message I receive helps me to keep my spirits up, so thanks for sharing so much kindness with me.

Jacob's Song Pick of the Day (10/23/2015): "Fight Song" by Rachel Platten

I've been sitting on this song for awhile, waiting for the "perfect time" to use it in one of my song of the day posts. It's a song that when I first heard it, I knew that it was something pretty special. Today's pick is "Fight Song" by Rachel Platten. Have a listen and read why I chose this song today:

Today is a HUGE day for me. I'm about to be wheeled in the Operating Room for the 13th time in 3 years. This will be the first time I've been sedated since they discovered that I have a heart problem. It's kind of scary, but I know that they're going to be watching me very carefully before and after the procedure. I'm having a set of scopes, a little camera that is inserted into various holes in your body, and biopsies at the same time. In Inflammatory Bowel Disease, sometimes the only way to tell what's going on with the insides is to go in and have a look. They are going to see whether the Stelara is being effective at calming down the inflammation and allowing for healing to happen. I want the Stelara to be working so bad. But then if the Stelara is working, then that leaves a lot of unanswered questions about why I'm feeling the way I am. Why I'm having bleeding episodes, why I can't eat solid food (I have an NG Feeding tube), why I'm having pain. It's hard to explain the feeling of being stuck between wanting both sides, which seems pretty near impossible.

Do you have a pre-"big day" routine? Something that you do before you have to go do something really big? My big day routine usually starts with my mom and I having "silly time" and taking some silly pictures together. We come up with some pretty corny health related jokes, I'll spare you from hearing them. We try to keep the mood light, listen to some of our favorite bands, launch into debates about unanswerable questions (What was before the singularity that caused the Big Bang? What if we could download our every thought?). We're even cracking jokes right up until the big moment.

Why do we have pretty much a silly day? Because it's part of our plan to fight this disease. I have to be able to laugh sometimes about the craziness that has made up the last 3 years. There's a saying "If I didn't laugh, I'd cry", well that's the case here. Sometimes it does feel like nothing is going right. I've had nights where I've woke up crying in pain from my joints and bones, then in the morning have episodes of spontaneous ejections of pre-digested something out of my mouth, have my ostomy bag fall off and not be able to stick on again due to a sudden reaction and all before 9am. The only thing you can do in situations like that is to laugh, because otherwise, you'd never stop with the tears. There is power in laughter. I know that when we start cracking jokes, all the problems seem a bit less extreme. It changes my day around. We all need a smile and a laugh sometimes.

So as I'm being wheeled into the OR, I'm going to be thinking of my Jacob's Healing Rooms project and how much laughter it is going to bring to other sick children. Because that thought will definitely be one to encourage some great dreams while I'm sedated and make me fall asleep with a smile.

"This is my fight song/Take back my life song/Prove I'm alright song/My power's turned on/Starting right now I'll be strong/I'll play my fight song/And I don't really care if nobody else believes/'Cause I've still got a lot of fight left in me"

*To DONATE to JACOB'S HEALING ROOMS please click HERE*