My Ostomy Story - 6 Things I Want You to Know

February 7, 2013 my life changed forever. I was 9 years old, and had lived with severe Inflammatory Bowel Disease for 7 months. I had run out of medication options to help get the inflammation under control and needed to have my colon removed in a procedure known as a sub-total colectomy. I then had to have an ileostomy to create a new way of eliminating poop from my body. Since that time I have lived life wearing a colostomy bag, something you rarely hear people talk about in public. I would like to share here what I want others to know about life with an ostomy.

6 things I wished others knew about life with an ostomy:

1. It's ok to have mixed feelings. I both wanted and didn't want this surgery at the same time. I had spent the last several months before my surgery either in the hospital, in the ER, or in a doctor's office. I had missed a lot of school and the chance to make new friends as I had started at a brand new school. I was tired of being sick all the time and just wanted life to go back to normal. But on the other side of things, I knew that this surgery might mean living with an ostomy forever. I didn't know what it would be like to look at my body after the surgery and worried that my stoma would get damaged easily. I worried what others would think if they knew. Would the kids at school tease me and make fun of the fact that I was even more different? This surgery is a huge life-changer that like life, has both positives and negatives. It's ok to think and feel both sides of this situation.

2. It can be embarrassing. There's no shortage of things that can happen when you have an ostomy. Leaks are one of the major problems with the bag. And they will happen at the most inconvenient times possible. Such as when you are stuck in major traffic and have nowhere to go. Or when you're in a public place and forget your supplies that day. "Releasing gas" or as my friend Jen puts it "Stoma squeeks" are another problem. And they will happen the moment things around you turn silent. There is absolutely nothing you can do to avoid this from happening, so it's best to develop a sense of humor when it happens.

3. There is no shame in having an ostomy. Earlier this year, an anti-smoking campaign featured a commercial with a lady talking about her ostomy bag that she had to get after developing colon cancer from smoking. Having an ostomy was shown as being absolutely disgusting and essentially something to be ashamed of. There are a lot of reasons why a person might need an ostomy, and most of them are for life-saving reasons. If my colon hadn't been removed, I could have died if it perforated. Being able to live is much more important than the inconveniences of a bag. Yes it can be gross to empty, and of course there is a smell, but I'd rather deal with that than not have a life.

4. An ostomy doesn't change who I am. It changes how my bodily wastes comes out, that is all. I am still human and have feelings. I still get worried about what others might think. I still have dreams and fears. I am still capable of most of everything that I was before I had the surgery (no more dodgeball thankfully!).

5. I don't mind you asking questions about it. I'd rather you ask me questions than to shy away from me or avoid me. I don't mind talking about it because it brings more awareness to something that no one talks about. I had never even heard the word "stoma" before 2012 when both my grandfather and I had to have ostomy surgeries (my grandfather is stage 4 bladder cancer survivor). Since then I have met so many kids who live with an ostomy bag, and have helped a few who were going to be going through with the surgery. It's only through talking about it that we can build awareness and acceptance.

6. I don't regret the surgery. Going into the surgery, we had thought that it was going to be a temporary solution until they did an ostomy reversal surgery known as a JPouch surgery. I think in the back of my mind I knew that this ostomy might be forever. My thoughts were confirmed when a few months later I was diagnosed with Crohn's Disease and likely will never be able to have an ostomy reversal. I'm ok with that. My ostomy gave me a bit of a life back again. It helped so that I could at least be at home with my family instead of in the hospital. I'm proud that I was able to accept the situation and turn it into a positive by donating my colon to research to help find a cure for this disease.

Life goes on after an ostomy. It's an adjustment, but you do go on to make a "new normal". Some days will be completely frustrating but when you remind yourself of what life would be like without it, there really is no choice other than to carry on. My ostomy reminds me daily that I am a survivor.

The "Good", The "Bad" and The "Ugly" - Treating Crohn's Disease (Part 2)

For those who haven't read part 1 of my epic Crohn's treatment story, you can go back and read it be clicking HERE.  An extremely short recap: I had been through 8 months worth of different combined therapies and nothing had worked to control my Crohn's Disease.

Little did I know that my journey was really just beginning and it was going to take a turn for the nasty. In February 2013, I had my colectomy surgery (removal of the colon/large intestine/large bowel), donating the organ to research in hopes of finding a cure so others don't have to go experience my story for themselves. I'm planning on writing a completely separate post about the colectomy, so I won't say much about it here other than we were all hoping that this was where the story would end.

It was about a month after my colectomy when I knew that things weren't going well. I was still passing a lot of blood, having low energy problems and just feeling plain awful. At first the doctors were wondering if it was just that I was a slow healer from the surgery, so we gave it a bit of time. By July/August we knew that it wasn't just a problem of "not healing" that there was something else going on. Despite my earlier major blood loss from the bleeding, my body always kept up and my blood levels would stay normal (surprising my docs!). Now, my iron was basically 0 so I spent my summer getting weekly IV iron infusions. August rolled around, the doctors decided to go in and take a look at what was going on again, and discovered for the first time that I had inflammation in my stomach and MAJOR inflammation in the duodenum (the first area of the small intestine after the stomach). The doctors said that this type of damage could be seen with Celiac Disease, so I went on a strict (and horrible!) gluten-free diet for 6 months. We bought new toasters, learned new ways of cooking, and tried every type of gluten-free pizza out there without finding one we liked. Not once did we cheat on the diet. But the diet wasn't the problem.

After 6 long months gluten-free, the doctors went back to take another look inside and found that things were even worse than they had been. I could have told them that from how I was feeling! The doctors started me on Humira, another biologic medication designed to suppress the immune-system similar to Remicade that is injected every 4-12 weeks like Remicade. The Humira shots were painful, I'd rather have an injection of just about anything else. But if it controlled the symptoms it would have been worth it! Unfortunately the Humira left me looking like a car-accident victim. I had at one point over 80 bruises on my body. Here's my legs:

I also had sudden cell death on my arms that turned them brown: 

This was still nothing compared to what was to come. We decided that Humira was not the medication for me. 

I spent that summer (2014) as an in-patient at the hospital for the entire summer when my weight dropped way too low. I was put on TPN, which is a form of nutrition given through the IV. The doctors started talking the 's' word again, meaning more surgery. Instead, they decided to try Remicade again. 

From the start it didn't go well, I wonder if it were a sign of things to come. I had a rash, shortness of breath and fever during my first infusion. But we pushed ahead. After my initial 4 doses they found that I wasn't retaining any of the medication as I should be. So they increased the dosage. Then this happened:

At first the doctors thought I was breaking out in hives, the itch was incredible and wearing clothes was extremely uncomfortable. Benadryl didn't take the itch out of it. Benadryl cream burned to put on. As it developed it became clear that it wasn't hives. The hospital gave my mom cream to put on it, but everytime she touched me I would scream in pain and my skin would start bleeding. Eventually dermatologist confirmed that I was in the small percentage of Remicade users who developed psoriasis from the medication. The psoriasis covered 70% of my body and was the primary reason why I was hospitalized for a month. Ironically, Remicade is used to treat psoriasis!

The doctors decided that I needed both a treatment for my Crohn's Disease since we had now gone through everything that was typically used. I had to stop the methotrexate (a form of chemotherapy) injections because they made me violently sick. I couldn't take the Imuran because there was something to do with my genes or blood that said it wasn't a good choice for me. Stelara (ustekinumab) is also used in the treatment of psoriasis but is just now being investigated for its potential usefulness in treating IBD. Thankfully, because of the psoriasis, I didn't have to apply for special access to have this medication. Even more thankfully, because of the expense of this drug, the pharmaceutical company gives it to me for free since we would never be able to afford it. I started Stelara this past May. 

Stelara really upsets my stomach, but the injections are a lot better than the Humira injections. Unfortunately, I just recently had another set of scopes done to see why I can't eat, and they've found some new inflammation, so it might not be working to help control the disease. It has been wonderful for my psoriasis though!

I hope that my treatment story highlights the need for more research into treatments and a cure for this disease. Stelara is one of the last options remaining. Another newer medication on the market, Simponi, works similar to the Remicade and Humira, so the doctors feel that it likely won't be as effective for me since I've already tried two medications in that family. There needs to be more research into refractory kids like me. Living with Crohn's Disease is hard enough on a child, but to already run out of treatment options is scary. I will have this disease for the rest of my life. I'm 11 now. If I live until I celebrate my 100th birthday, that's 89 more years of living with this disease. I sure hope that in that time they can come up with more effective treatments so that I, and people like me, can have a break from the "roulette wheel of medicines". 

The "Good", the "Bad" & The "Ugly" - Treating Crohn's Disease (Part 1)

It's been a tornado of 3 years of different treatments for my refractory Crohn's Disease. Sometimes you imagine the doctors sitting in their rounds and spinning a roulette wheel to decide which treatments they're going to do this week/month. When it comes to treating Inflammatory Bowel Disease, the treatments change from person to person just as the type of symptoms do. Some patients are on a grocery list of medications, while others seemingly take very little at all. Some patients may have combination therapies given to them, others might just have one or two at a time.

When I first started with my Inflammatory Bowel Disease symptoms, I was started on every person with IBD's dreaded medication - prednisone. Prednisone is a steroid that works really well with stopping inflammation, but the side effects are often horrible. Prednisone through the IV worked best for me. Whenever the doctor tried to switch me over to the pill form and then have me start to lower the dosage, I would immediately go into a flare (dramatic increase in symptoms). It was usually enough to land me back in the ER. I went from being a really small 40lb kid to 111lbs at my highest. I would have heart palpitations and a racing pulse, intense sweating, at 9 I was starting to grow a mustache (great for Movember but not so much for 5th grade). I was hungry all the time and couldn't get enough food. I'd have these mood swings for no reason. I stayed on prednisone from the time I was diagnosed in July 2012 until March 2013.

To the prednisone mix, they added sulfasalazine, a medication used in the long-term treatment of Inflammatory/Rheumatory Diseases. Unfortunately, I had to stop the drug before really starting when my liver didn't respond well to it. The doctors decided that my body didn't react well to the sulfa based medications and it was time to move on. 

To the prednisone mix they added some antibiotics that have shown to have benefit in treating IBD. At least I didn't react to them, but they also didn't work that well at controlling any of my symptoms. I stayed on antibiotics until they removed my colon in 2013. But they weren't done adding to the mix yet. 

We then took out the "heavy hitters", the Jose Bautista's of the IBD treatment world, Remicade. Remicade is a great drug for the majority of people that need it. When a person with IBD needs to go past the less intense drugs, this tends to work for them in a lot of cases. It's an IV infusion medication which is made using mouse protein. So I am now part Mickey Mouse. Remicade works to help suppress the immune response in my body to change the way some of the immune cells work. It can be given every 4-12 weeks depending upon how well the person responds to it. They added Methotrexate, a chemotherapy agent to further suppress the immune system and to prevent antibodies from the Remicade. I didn't have any problems with the Remicade the first time around, it just didn't work for me. I continued on Remicade and Methotrexate until I had my colon removed. 

We tried a lot of treatments before I lost my colon, and it was all in the time-span of 8 months. My mom wanted to give all the options a chance before we turned to life-changing surgery, and I can honestly say that we gave it all a really good try. It's just that this disease is so complicated to treat and not everyone responds to the available meds or responds in different combos, that it can be just as frustrating for the doctors too. 

I can also honestly say that considering what was to come for treatments, up until the surgery I had things relatively easy. Tomorrow, I share the "Ugly" as my treatment story continues. 

*Always remember that just because my treatment experiences haven't been the greatest, it doesn't mean that you will also have a similar experience. Don't be afraid to try new things, if you don't try all the options you might miss the one that works for you. And if you do get to the point, like me, where you are out of treatment options - always, always, always hold on to hope. Tomorrow there might be something new. Tomorrow they might make a breakthrough. So keep holding on*

Jacob's Song Pick of the Day (11/03/2015): "Heavy" by Emblem3

Today's song is inspired by the challenges that we all face in our lives. For today, I have picked "Heavy" by Emblem3.  Have a listen and read why I chose this song today:

"I knew from the start, the start/All of the struggles that we go through/They may scar my heart/But in the end, it's what will make you".

It doesn't matter whether you are going through health challenges, money challenges, relationship challenges, we all have our own struggles. Some struggles only stay a short time before changing, but other struggles can stay with us for our entire lives. These challenges bring out certain characteristics of who we are, they shape us into the people we are today. How you work to overcome your challenges can be defined as Resilience. The wonderful people at the BystanderRevolution.org/@BystanderRev (on Twitter) were quite touched by the sharing of my story that they honored me with one of their Upstander Awards:

My home nurse and I were chatting today about how crazy a journey it's been with my Crohn's Disease and heart issues over the last 3 years. I've gone through medical crisis after medical crisis with only short-term solutions to try to find something that would get my Crohn's under control. She said that she knows Crohn's is very difficult to live with, but that I'm by far one of her patients who has had the most struggles with it that she's worked with in awhile. Truth be told, it is hard to cope when your disease is so resistant to treatment. Participating in various campaigns and donating my time to help others is something positive I can do that helps me escape all this day-to-day "stuff" that I would love to be able to completely ignore. Sitting sick at home has forced me to connect with others in a different type of way. Making new "internet friends" and spreading the word about giving, hope, and courage has become my new daily "thing".

There has been something great to come out of all of this. I'm reaching more and more people with my story everyday, which helps to spread the word about my #beforeIdie wish to help make a difference for other sick kids by creating child-friendly IV treatment rooms. It's come up to one year since I started making plans for Jacob's Healing Rooms, and all of the work, the frustration at not being able to find words and make sentences is finally starting to take off. I'm so excited to continue to help inspire others through my charity work.

"But You Look Good..."

There's a phrase that really gets to me as someone living with a chronic, invisible (most of the time) illness. I know that it comes from the best of intentions and is meant to lift my spirits, but to me, it also feels like it comes from a place of doubting that I really am sick. I know that it seems to come from a desire by the person who said it to feel better about the situation. 

"But you look good". Of course I don't look "diseased", unless I'm in active psoriasis flare, or am sporting the latest in NG Feeding tube fashion trends, you don't actually get to see my illnesses. My illnesses are buried deep inside, sometimes the only way for the doctor to really even tell what's going on inside is to actually go in with a set of scopes and see for themselves. 

What you can't see is that my insides are often a mess. I have little bleeding sores and blood vessels in my digestive system. What you couldn't see was a year ago when part of my small intestine was so inflamed that pictures of it reminded people more of a colon, and they thought that I might lose that part of my intestine as well. People comment that I look better with the weight gain since I'm no longer such a skeleton that you can count individual bones on me.

 But what they don't see is that there is no real explanation for the weight gain since I'm really not eating anything and my feeding tube calories have been reduced. They don't see that the weight gain has been really hard on my body, making me feel even more tired out than normal. It's impossible to see that the pain in my legs and joints makes me cry out at times and wakes me from my sleep. There's so much about my illnesses that just stay completely hidden. 

"But you look good" is a conversation stopper. I've usually just gave you the honest truth about how I'm feeling when you respond with that statement. It takes away my experiences and passes them off as not-important because I'm looking so good. This also happens quite often in healthcare when helpers make an assumption as to how we're really doing by how "good" we are looking. I've once spent 20 minutes going over my concerns with a healthcare provider, and at the end of my how-I'm-doing-update they responded with "But at least you're looking good". That doesn't mean much when I can't eat anything without either wanting to throw up or actually doing it. It doesn't mean a lot when I'm just not up to doing normal kid things like Halloween trick-or-treating. It doesn't bring me closer to my goal of wanting to feel better. 

Always remember that you can't judge a book by it's cover so you can't judge a person by their appearance. I'm thankful that at least I still have my "good looks" but when it comes down to it, it's more important that I feel good too. 

Jacob's Song of the Day (11/02/2015): "One Step at a Time" by Jordin Sparks

Today's song is brought to you by a metaphor/cliche that is often used for anyone that is struggling at the moment. I have selected "One Step at a Time" by Jordin Sparks. Have a listen and read why I chose this song today: 

We often talk about our life as a journey, and the need to keep moving forward, the need to keep putting one foot in front of the other. Physically, I'm feeling pretty rough these days. I was really down on Halloween because I really wanted to go out trick-or-treating but could barely stand without feeling like I wanted to fall over. I also can't eat candy (I'm on a strict no preservatives, spices, artifical colorings and flavorings, no-fun-at-all diet), and I can't digest raisins. That doesn't leave a lot of options for people like me! Actually, it gives us no options at all! So I told my mom to take my sister out anyway and I would hand out candy. 

Then I decided to take one step at a time. I decided that I wasn't going to let this disease take yet another holiday from me. I quickly assembled a costume and even managed to catch up to my sister. 

I was only able to make it to about 8 houses, but that's what taking one step at a time is all about. You need to be able to celebrate the tiny steps forward that you can take. 

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.