A Plea to the Politicans of Ontario

Dear Politicians,

Today is World Health Day; a day to help promote healthy communities, and the importance of healthcare worldwide. As a person living with several chronic health conditions, healthcare is absolutely vital to my survival. I fear that the direction that the Ontario government is going with healthcare, may not be supportive or benefit the health of us living with chronic illness.

Seven years ago, I was diagnosed with severe Crohn's disease, a form of Inflammatory Bowel Disease. Despite my doctors best efforts, I have yet to reach remission in those 7 years, which has led to 19 trips to the Operating Room, the surgical removal of my colon, and many long hospitalizations. Prolonged inflammation can lead to cell changes and the development of colo-rectal cancers, which is the second most deadly form of cancer a patient can have. In June 2018, I was diagnosed with rectal cancer at the age of 14. Tomorrow, I will be having my rectum removed for Operating Room trip #20.

Did you know that colo-rectal cancer, when it's caught in the early stages, happens to be one of the most curable cancers to have? I'm among the extremely lucky; because of regular colonoscopies, the doctors caught my cancer in the early stages. If it hadn't been for the frequent monitoring to look for these changes, my cancer story would be very different.

My cancer surgery doesn't scare me as much as the proposed changes to OHIP that allows Ontario residents access to healthcare services. Patients with Inflammatory Bowel Disease can develop intestinal blockages, strictures (narrowing of the intestines) and have an increased risk of intestinal perforation during these procedures. The procedure itself can be painful to those who have significant inflammation in the bottom part of their intestines, and can also lead to increased anxiety. It is my worry that with the increased risks associated with unsedated colonoscopies, heightened anxiety and push to do less frequent scopes, that IBD patients will put off these procedures. Colo-rectal cancer can be quick to develop, I went from inflammatory cells to cancer cells within 6 months. Quite simply, a colonoscopy saved my life.

I am writing in hopes that my government leaders will take a moment to consider how their proposed changes will negatively impact the health of so many. Yes, there is a cost to doing regular, sedated colonoscopies, but there is a higher cost associated with not doing them. The cost of chemotherapy, radiation, diagnostic and monitoring tests for someone with advanced cancer will exceed the costs of regular preventative tests. Promoting the health of all Ontario residents can help to avoid the costs to the economy and ensure that we all can contribute to society.

The province of Ontario has the chance to be a leader in providing great healthcare. My future depends on the decisions that you will make in the near future. Please, reconsider these changes and find ways of promoting the health of everyone.

Sincerely,
Jacob Ralston

Giving Tuesday 2018

Giving Tuesday 2018 starts with a picture:

They say a picture is worth a thousand words, so what words would you use to describe this room? Imagine being a child, how would you feel walking into this room? What comforts do you see in this room for a child who is feeling scared, alone, worried, or sad? How would you feel if I told you that for the next 8 hours, this room would be a place that you couldn't leave?

Now what if I told you that this is an outpatient treatment room at a children's hospital? 

My first impression of this room goes along with words like "heavy", "depressing", "discouraging", and "boring". In order to "win" a trip to this room, I had already failed other treatments to get my Crohn's Disease under control, so there was already this feeling of having been defeated. Now, I was going to start a new IV treatment, where the potential for serious reactions meant that it had to be done in a carefully monitored environment. It was so carefully monitored, that for the duration of the treatment, you need to pretty much stay in your chair, with the only distractions other than medical equipment being the items you brought with you that day. These were the rooms where I was started on Remicade treatments, and after failing Remicade, received on-going iron infusions. This is the room where I sat wondering how this treatment would make me feel, if it would be helpful, what reactions I would experience from it, and plenty of more questions. This is the room where up to 6 other patients are receiving their own IV treatments, but you can often tell that they too, are just as worried and feeling the weight of the world on their heads. This is the room where you often find out whether you are responding to the treatments. This is one of those rooms that you'll likely remember for a very long time to come.

As most of you know, I've spent A LOT of time at Sick Kids Hospital in various departments for my ever-growing list of medical challenges. I've had a lot of opportunity to compare other areas of the hospital with this area, and really, there is no comparison - this is one of the areas of the hospital that is in desperate need of an update. Unfortunately, this is also one of the areas of the hospital that is severely under-funded within the hospital's budget, with the majority of the general fundraising going to help other areas of priority. The result are these rooms where the environment does little to help lift, engage and support the patients who use them.

This Giving Tuesday, I'm asking once again for your help to make my dream of child-friendly outpatient treatment rooms come true. These rooms should help to encourage healing, give hope, lift the spirits, distract from the worries, and inspire others. Jacob's Healing Rooms project at Sick Kids hospital will help to make treatment day better for all of those patients who will use one of these rooms in the future. Your generous donations will help to purchase materials such as covers for the awful lights, bubble tube machines, a fresh coat of paint (in a different institutional color!), as well as electronic gaming machines that will hopefully allow patients to play together as a way of building peer support.

I'm closing in on my goal, $42,000 out of $60,000 raised so far, but I need your help to turn my wish into reality. Please consider making a donation today to Jacob's Healing Rooms project at Sick Kids. Together we can make a huge difference in the lives of kids who are fighting for better days. Together we can make treatment day a bit less scary and depressing. Together we can change the whole treatment experience.

To donate: https://www.sickkidsdonations.com/registrant/FundraisingPage.aspx?RegistrationID=3641076

THANK YOU!

What I Would Teach to New Doctors

Dear New Doctor,

Congratulations! All of your hard work and long hours has paid off, and now you will be part of the next generation of the medical community. Your role and service is so critical to those of us living with chronic illnesses, without your help, the quality of our lives would take a really big nosedive. We depend on your knowledge and skill that you have cultivated and grown over the years in order to be successful in our lives, just as you depend on us in order to have people to provide services to. Thank you for your commitment to trying to help your patients to achieve their dreams through improving and maintaining their health.

As you leave behind medical school for your future careers in your chosen field, there's a few things that I'd like for you to consider as you set up your practice. As a patient, I've noticed that there are a lot of differences between the ways that doctors interact with their patients, some of which are helpful and some of which ... are not so helpful. I want you to be able to deliver the best possible care to your patients, and I want your patients to feel that they are getting the best possible care from a doctor who truly does care about their patient as a whole.

The first thing I'd like for you to remember in your day-to-day encounters with patients is that we are all unique. You spent a very long time in medical school and in training, learning the "textbook" definitions of many of the illnesses out there. You have amassed this great wealth of knowledge which is invaluable to us as patients. However, not all of us will fit into your neat little textbook definition, and definitely not all of us will be effected the same way. For example, my Crohn's disease wasn't an obvious case. In fact, at first I was diagnosed with Ulcerative Colitis. Even after my colectomy, when my duodenum started showing signs of inflammation, I was told that it acted more like a colon with the whole section being effected rather than having skip lesions, or patches of inflammation. It wasn't until months later when they did a pill-cam study on me did they find that I had these skip lesions, a hallmark of Crohn's Disease.

Next up, don't assume. We've all heard the saying, and it's not something I can repeat here as it's not PG-13. However, a lot of assumptions are made, without even checking in with the patient to see the accuracy of those assumptions. When you make the wrong assumptions, it can seriously impact on the quality of care your patient receives, causing their health to suffer, and impacts the patient-doctor relationship. For example, a lot of chronically ill people live with depression and anxiety. However, not all of your patients will have depression and anxiety as well. Despite my health, which at times really sucks, I am HAPPY. I feel like I have, for the most part, a great life. Yes, I struggle, but every single person on this planet has their own personal struggles. When my healthcare providers use psychological assessment forms to judge off a piece of paper whether I am depressed, there's often no question asking "HOW HAPPY ARE YOU?". Instead you are asked "In the past two weeks, rate how often you have felt sad/or cried/or worried/etc." There's no option to say "I really didn't feel sad". And the paper also doesn't allow you to put your answer into any sort of context that explains your choice. Like "Do you vomit frequently?", well, I have Crohn's, vomiting can be par for the course.

It's also assumed that because I use a wheelchair to improve the quality of my life, that I don't do anything physically active. This is a very dangerous assumption because it immediately closes the door on exploring other reasons why your patient feels they can't do certain things without using medical device assistance. When you make assumptions, you run the risk of not providing the best possible care to your patients. 

Listen to your patient. I can't stress this little word 'listen' enough. I come to you with my health story, tell you how my illness has been impacting me, and seek your input from that knowledge base you have built. When you talk over me, interrupt me unnecessarily, or just plain not acknowledge my complaint, it's not respectful or fair. These are real problems that we come to you for, and they really impact our lives. If you don't listen, and believe, what we are saying... I'm not sure where we're supposed to go from that point. For example, if I come to you and tell you that I am struggling with a certain problem and it's keeping me from XYZ, don't just pass over it, ask more questions and seek to understand. Listening to your patient is respectful and vital to the patient-doctor relationship. There is nothing worse as patient than leaving an appointment and feeling like you weren't heard, acknowledged or respected. 

Finally, work WITH your patient. The medical team has doctors, nurses, social workers, and other medical professionals. In your more complicated patients, there might be an enormous amount of individuals that are involved in providing care to your patient. Your patient is at the center of all of this, and is the only person who can inform you about their experiences. Your patient needs to be informed of all of their test results, not only so that they can make treatment choices, but so that they can inform other members of the team. At times, we might need you to connect directly with other team members, in order to coordinate the best possible treatment plan. Also, when considering treatment planning, consult with your patient to see if the treatment plan will work for them. Again, as we are all unique individuals, we enjoy unique lifestyles as well. A treatment plan that doesn't work for your patient for whatever reason, is doomed to fail and essentially useless to your patient. Working together to create a treatment plan, you can help to avoid the pitfall of having the patient not comply with your recommendations.

To tie it up into a neat little bow, I'll call these ideas my "prescription to doctors for providing the best possible patient care", and they form the basis for building a healthy patient-doctor relationship.

Thanks for reading!
Wishing you the best in your future,
Jacob

Opportunity Knocked, Or Tweeted, and I Answered: My Patient 2 Patient Education Project Experience

Opportunities. Every day we are faced with opportunities; the opportunity for change, to learn, to help make a difference in this world, to make choices. Even just waking up is an opportunity in that you get the chance to do another day. Late last fall, I was given a major opportunity to represent the child-adolescent patient voice at an IBD (Inflammatory Bowel Disease) conference called "Patient 2 Patient Education Project", or P2PEP, for when that name sounds way long! Of course, I immediately grabbed for this amazing opportunity. To be the first pediatric patient that the University of Michigan IBD Program has invited to speak at this event, alongside other well known IBD advocates in the social media world, was a great honor.

Events like P2PEP are so important to our IBD community. These events are a chance for patients to come together to see that they're not alone, that their struggles are often similar to others. Like how my struggles as a 14 year old with Crohn's, can be just as similar to the 60 year old living with the disease. It's an opportunity to look around and see that you truly are not alone on your journey.

P2PEP is a chance to learn from both patients and experienced doctors. No one talks about our disease. It's almost impossible to find what some people call a "socially acceptable time" to discuss our symptoms with our friends, families, strangers in the elevator, etc. Here's how I see that conversation going:

Friend: How's it goin'?
Me: Well last night, I couldn't make it to the toilet and ended up coating the floors with vomit. As if that wasn't enough, my ostomy bag let loose and sent poop everywhere in a massive code brown incident.
Friend: *crickets*

Unfortunately, for a lot of IBD patients, these are common statements. There is no good and acceptable time to talk about what happens with our body functions. Our disease is one of silent suffering when it's not "right" to talk about it. Yet the only way we're going to educate other people, and find a cure for this disease is if we tell our story. If we shout our stories out loud, and keep shouting, awareness will grow. P2PEP gives us an opportunity to come together to give voice to what is important to us as patients, to address the things that might not always get covered in the often-too-quick medical appointments, like partnering with your medical team, how to get the most out of your doctor visits, and more about the other treatments you likely have not heard about.

The great thing about P2PEP is that it's an event for everyone regardless of age. You might not think that's a big thing, but for teens like me, I think we often feel left out of big medical conferences that aren't specific to the pediatric population. The topics discussed are ones that are actually chosen alongside the patients, to hopefully cover what is important to them and what they want to learn. And that means even us pediatric patients. For example, this year I presented with Dr. Neef on the topic of Diet, Growth and Puberty in IBD, and how those things can be particularly challenging for us as patients. Another talk focused on the idea of transitioning from Pediatric to Adult Care, something that sooner or later, us pediatric patients are going to be forced to do. Which is kind of scary when you aren't prepared for it. So P2PEP really does try to touch on it all within a few short, crazy hours, to give a quick "highlights" of what's going on in the IBD world and why this matters to patients.

I had a great time meeting other doctors, fellow health advocates, and patients, it all came to a close way too quickly, like it was just a dream. As exhausting as the day was for me physically, I left feeling inspired by others, and that is always a great feeling to part such awesome company with. It certainly was a dream of an opportunity.

Child & Family Centered Care Week at Sick Kids Hospital

Last week I had the incredible opportunity to be a part of a panel discussion on Engaging Patients as part of Child & Family Centered Care Week at Sick Kids Hospital. It was an amazing honor to give a

voice to the other patients in the hospital and their families.

I'm happy to be able to share my speech with the world, hoping that the medical community can take notes about what it means to the patient to be included and take steps to including patients at all levels of healthcare. Without further delay...heeeeere's Jacob (insert drumroll!)



★Hi, Good afternoon! I'm very happy to be here today, not only to share my story, but to be able to represent other child patients and hopefully inspire you to help make an even bigger difference in the lives of others.

My name is Jacob, I'm 13, and I participate on the Children's Council here at Sick Kids. I first started coming here when I was 8 and diagnosed with severe Crohn's Disease.

Giving to others has always been important to me, so when the doctors' best efforts to control my disease didn't work, and I need a colectomy, I asked to donate my colon. You could call this my first really big donation, but I still wanted to do more to help others.

Unfortunately, I experienced a lot of health complications during my last 5 years. I have been to the operating room 16 times. I have spent holidays like Easter, Christmas, birthdays, and summer vacations here. I've often spent weeks here as an in-patient at a time, and sometimes, I have been here at least weekly for appointments. Thankfully my GI team never gave up on me and after a lot of trial and error with everything under the sun, they have finally found a medication that is working well for me right now.

Healthcare is a partnership. At the beginning, I come to you with a medical problem. You, the doctor, listens to me, asks me questions, and prescribes the next steps to getting better. But let's say the medical problem I bring is complex and chronic, like my Crohn's Disease. If I am going to live with this for the rest of my life, or until there is a cure, I need to know something about it. That means that I need you to answer my questions which needs to be done at the child and family's level of understanding.

I once had a doctor who suggested that I didn't need to know as much as I do about my disease. This is a huge problem because the more I know, that more I can participate in making decisions about my own health. I can't take responsibility for my own health without having all the information and developing an understanding about it. I need to be able to bring up new research that may improve my health, as sometimes doctors might not have thought of something in their busy schedule, and that something might just be the key to the right treatment.

But healing is about more than just finding the right treatment, it's also about the support services the hospital offers, that encourages patients to heal and to participate as partners in their care.

Because of my health experiences, I have been to many areas of the hospital, from GI to Dermatology, to the In-Patient wards and many others. And of course you can't forget the fun places like Marnie's Lounge, or the old Starlight Lounge which is now the Samsung Space. I've had a lot of opportunity to compare different areas and to imagine "how would I make this better?"

For example, consider unit 4C, the medical short stay unit where Inflammatory Bowel Disease patients start to receive IV infusions of medications like Remicade. Inflammatory Bowel Disease patients are often prescribed this strong medication when other treatments have failed to work. I can remember when I started these treatments worrying things like "What if this treatment doesn't work?" and "How will I feel afterwards?"

There is a lot of hoping going on too; hoping that this will be the medication that allows you to be out of the hospital; hoping that this will take away the pain; hoping for a return to being a child. These fears I would imagine are shared with a lot of the patients who are coming through those treatment doors.

Now imagine having all those fears as a child and entering a place with very few things to distract you during your 8 hour day. The three large group treatment rooms are very plain rooms, where the only distractions are 2 very old televisions that are out of reach of us patients to control, and about 6-7 wall stickers.

When I compared this to the other areas of the hospital, it was clear that these rooms were in desperate need of an update to make them more child and family friendly. In other words, they needed to encourage healing more. Working with the Foundation, I created "Jacob's Healing Rooms Project" which will see tablets installed at each treatment chair; a bubble tube sensory machine to add color and visual distractions; and light covers to make the room more appealing by covering the harsh lights with pictures of clouds. Using social media, I have just reached $36,000 of my $60,000 goal! I'm really hoping that this will help to uplift the spirits of children and their families coming to Sick Kids for short-stay treatments, and also help the staff by creating a more appealing and enjoyable place to come to work each day, and do the fabulous job that they do for us.

I know first-hand that the right environment can help to encourage healing. When patients work with the hospital to develop services that promote a healing environment, it has a positive impact on everyone's health. Patients who discover things that could be done better, voice their concerns, and work in partnership with the hospital, can help create a healing atmosphere.

I enjoy the opportunity I have at Sick Kids to be able to give a voice to the most important people in this hospital; the patients and their families. These are the people who use the services you offer, so it is important to have their input into what would be even more helpful for the hospital.

But I didn't want to stop there with trying to help improve this hospital, so this year when it was suggested that I apply for Children's Council, I jumped at the chance to be able to make a larger difference.

Truth be told, I come to this hospital so much that when I walk through the halls, I always see somebody I know or who has been involved with my care. Spending those holidays here, the Sick Kids staff has become almost like a family to me, as I'm sure many other patients and their families who spend time here would agree.

The staff play a huge role and impact our personal story, in fact, it becomes impossible to tell our story without them. Each of my bravery beads not only tells the story of what I personally have gone through, but it also tells the story of the staff in the background. For example, my clown beads tell the story of an amazing therapeutic clown, A LeBoo and the incredible way that he uses his gift of finding a way of interacting with each of us on our own personal level. And he seems to never forget a face. My bloodwork beads tell the story of the kind blood lab ladies, who even though I don't like 6:30am bloodwork, always greeted me with a smile and jokes. There isn't a single bead here that doesn't involve a staff member in the background. This is why child and family centered care is so important.

Child and Family Centered Care, where families and patients like me can partner with staff at various areas of the hospital from designing of patient spaces to evolving policies and planning, plays an important role in developing that kind of relationship that I just described. I hope that more patients feel that if they too recognize that something can be made better, that they can approach the hospital with their ideas, and they too can participate in changing the hospital for the better. As the hospital continues to evolve, we as patients and families need to be included and encouraged to provide input and feedback, in order to continue to make this the best hospital to come to. No matter our abilities or the challenges that stand in our way, we are all capable of making a difference in the lives of others. Nothing is impossible when you have a dream. Thank you.★

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.

Love, Time and Death - The Trio of Life

Yesterday I saw the movie Collateral Beauty. It's about this guy, Howard, struggling with the grief from losing a child and his search for meaning while trying to put his life back together. In his search, he writes letters to concepts - Love, Death and Time, the three things that connect us all.

It's a movie that makes you think. Can there be beauty through pain, suffering and loss? Can we really take tragedy and see light within the darkness? Is there such a thing as beauty in ugliness?

I think so. Love is within everything. It's the passion, it's the motivation, it's the inspiration. Love is the creative force in this world and everything is created out of love. Love is the main reason for doing what you do. But love is also in the struggles. Love gives us a reason to keep going each day, a reason to get out of bed.

Living with Crohn's Disease is ugly. I've had 15 sets of gastroscopies, colonoscopies/ileoscopies, proctoscopies, all with biopsies. I've had my colon removed and now have an ostomy. I have a permanent/long-term feeding tube. I've had to live through severe side effects caused by Remicade, then Humira, and then allergies to a list of things longer than I am tall. I've had some pretty painful procedures like rectal ultrasounds, skin shavings and skin biopsies. I've had a few nights where I wasn't sure if I'd wake up to a tomorrow, such as when I had my hypertensive crisis episode and collapsed at the Train concert. Or when I had pneumonia and aspirated into my lungs. It's ugly. Yet, there is still love to be found in all of this suffering. Love is what lifts me up to keep me going each day. Love are the complete strangers that reach out with little notes of encouragement. Love are the little rays of light in otherwise very long, dark days.

Time gives us a chance to use our love, to transform the ugly into beauty. Time is the hope for tomorrows, the hope for a better future. Time is an opportunity. No one knows what tomorrow brings, the only time that we have is now. Time and Love give us the opportunity to create a lasting impression on the world. We have this moment to make a difference, we can make this moment matter. I'm very aware that our time here is short, and can be much shorter than any of us could have dreamt of. I want to leave something beautiful behind when I die. I want my life to have meant something. I want to be remembered as the kid who did something positive to make this world a better place.

Death. We fear it. We want to run and hide from it. But death isn't necessarily to be feared. To me, I think of death as the beginning, the point where your old life is going to meet a new life, just possibly in a new form. And that's exciting since it means that there never really is a final "goodbye", that we're connected together even after death. It's the beautiful side of death that is often overshadowed by the grief death creates. Even out of the pain of death, beauty still exists. Proof of this can be found in any of the deceased transplant donors, or in the charities that are created after the death of a loved one.

Everything comes down to acceptance, which also comes over time and with love. You accept that things change. You accept the reality of your situation for what it is. You accept your personal limitations. You accept your life for what it is - a journey filled with possibilities but not without challenges as well. Acceptance is necessary to truly live, if you don't accept the positives and the negatives in your life, you spend so much more energy fighting back against them rather than spending your energy moving forward. I accept that I have multiple illnesses that I will live with for the rest of my life. That doesn't mean that I am happy to have Crohn's Disease or Ehlers-Danlos Syndrome but I have to accept that these will be in my life as part of my path to happiness.

So the next time you're faced with a crisis, stop, breathe, and try to look for the beauty, look for your opportunity to turn the ugly into something beautiful. Make today matter.

A Million Thank Yous from the Heart

Family. Friends. Community. These things are on my mind as I sit down on my 13th Birthday to write what I hope to be is one awesome thank you letter. These three words are so important. Your
community is your home base, they're all the people who you haven't met yet but are just waiting to become friends. They're like the space around an atom, they're there but they're invisible until you go looking for them. Then you have Friends, who are like the electrons surrounding the nucleus. They help to bring energy and support the nucleus, consistently there even though they might move around a lot. Then you have family, which is like the nucleus. It's tightly compacted, full of possibilities and serves as the heart of the atom. My nucleus, my family, grew huge over the weekend!

This weekend I hosted Jacob's Birthday Bonanza, my drop-in birthday fundraiser for Jacob's Healing Rooms to redo the outpatient treatment rooms (4C) at Sick Kids Hospital. It was a huge success but only because of family, friends and community. Without the help of a lot of people, most of whom were strangers to me, Jacob's Birthday Bonanza would not have been the success that it was. I owe a lot of thank yous. It's this outpouring of generosity that inspires me to keep going, to keep trying to make Jacob's Healing Rooms become a reality, to keep dreaming of changes I can make to help this world be a kinder and more welcoming place. 

To Mayor John Henry, MPP Granville Anderson, and Councillor Willie Woo, thank you all so much for taking the time to come out and take part in my birthday. It means so much to me, and I was happy to be able to share my special day with you all. I can't imagine too many other 13 year old have the honor of saying that they celebrated the day with their local politicians!





To the amazing Durham Regional Police Services - THANK YOU! Your
attendance made me feel pretty extra special on my special day. I don't know too many other 13 year olds who have a whole bunch of officers show up at their birthday parties. It was so overwhelming that you all would take the time out to come and support Jacob's Healing Rooms. I look forward to my tour!


To Pepper the Clown and Bob the Magician - What an amazing surprise for you
both to donate your time to help keep my guests and I entertained. And
entertained you did! Not only are you guys fantastic at what you do, but you're also incredibly warm and generous people. I felt so incredibly lucky to have you both at my party!




To Boston Pizza Oshawa - Wow. Your support of making Jacob's Healing Rooms come true is absolutely amazing. Thank you for going so much above and beyond what anyone could possibly hope for. The pizza donations were a huge hit with everyone (we were only left with 1 slice!), and I love the idea of selling the kids club meal cards with $1 going back to Jacob's Healing Rooms! I can't wait for our Celebrity Serve Night!

To Jack Astors (Whitby) - Incredible. Every now and then you run into extremely special people that

really make a difference. Thank you so much for jumping on board to support Jacob's Healing Rooms from the moment you heard about my project. The outpouring of love from your staff has been so overwhelmingly amazing. The huge tray of cookies was so very thoughtful and yummy! I look forward to working with all of you around the Jacob's Healing Rooms server shirts - I have some ideas! 

To the Whitby Curling Club, thank you for donating the space for a discounted rental price! We were able to transform upstairs into a fun-filled party room quite nicely. Your support of Jacob's Healing Rooms has meant a lot to us! 

To Karen, Marilyn and Ken Easby from Gold Reflections (Bowmanville Mall), thank you for your never ending support. From running around with my mom to ask for donations, to making sure we had everything we need and helping with the set-up, donation table, our special surprises and clean-up, you guys were there to help us out. 

To Jen Doolan, Doug Hamilton, Doug Izard and Robyn Minnikin - Thank you for helping in the set-up and clean-up, and arranging things for us during the party to help avoid crises. It was hugely appreciated! 

To Trisina at Skippy Cakes (Hamilton) - Your cake is a work of art. Not sure if I or my mom told you,
but when I was younger I used to re-read the Lorax all the time, it's one of my Dr. Seuss favorites. Thanks for being so awesome, driving all the way from Hamilton just to come out for my special day. And helping to clean-up afterwards, even though we mostly chatted rather than worked! 

To Jen of Jennifer Rue's Photography, thank you for taking such beautiful pictures of my guests and I.  You have a special talent with that camera. Thanks for being a part of my day. I can't wait for our next photoshoot! 

To Andrea Kirkwood-Look, Emiko Balazik, and Alison Smith (Ali Katz Cookies) - Thank you so much for providing such yummy snacks. Our bellies much appreciated them! 

To all the companies and individuals who donated such amazing prizes - Mandy Rusk, Clare Izard, East Side Mario's Whitby, Party City Whitby, Bev Bradbury, Buffalo Wild Wings Oshawa, Wild Wings Whitby, Melanie Pringles, Putting Edge Whitby, Boston Pizza Oshawa, Billie Jax's Whitby, Mastermind Oshawa, Scholar's Choice Oshawa, Edible Arrangements Whitby, Swiss Chalet North Oshawa - Thank you for being part of my special day. Without the generosity of people like you, it would be so much more difficult to make my dream into a reality. 

To those special people who took the time to come and hang out with me, thank you for making my day so very special. We may have started out as strangers, but you are all now my family. I couldn't be luckier to have such an amazing and supportive team of people cheering me on. I will always treasure the memories that we created. 

Jacob's Birthday Bonanza has raised $3674.65 so far thanks to the kindness that everyone has shown to me. Thanks for sharing in the best birthday I could have asked for! And Thank you for joining my family. 

What Happened When I Thought No One Would Attend My Birthday

My life is anything but normal, or at least what people think of when they think "normal". It always has been, I'm pretty used to to it by now. I've spent the majority of the last two years unable to attend school because of being sick, or in pain, or both. It's really put a huge downer on my ability to make friends at school or elsewhere. In order to make friends, you need to see each other once in awhile. That's something that just doesn't happen all that often for me.

So the topic of my 13th Birthday came up a few weeks ago when my mom asked me what I wanted to do to celebrate entering "Teen-dom". My birthday is December 13. Let me be the first to tell you that it's not a great time of year, because of this other little holiday called "Christmas" being so close. But the real problem for me isn't even competing with Christmas.

I haven't been well enough to have a birthday party since grade 4 (I'm now in grade 8), this year is shaping up to be the same way. Since I haven't been at school to build friendships, I don't think that anyone I invite to come hang out with me would come over. So I had an idea.

Why not host a public birthday party? Invite whoever would like to come out, play some games with me, chill out, have a few laughs, make a few friends, and maybe have a few surprises along the way! Then I came up with the idea that if anyone did want to give me a gift, that I would tie my birthday to Jacob's Healing Rooms project at Sick Kids to raise funds to make my wish of updating the IV infusion treatment rooms come true!

So I'm hosting Jacob's Birthday Bonanza in real life this year!! Please join me on December 10, 2016 from 1-4pm at the Whitby Curling Club, 815 Brock Street North, Whitby.

The Great Return...The School Year Begins

Stop the presses! This week I did something that I haven't really done in the last 2 years, I went to school. Not only did I finally manage to walk through the front doors, but I made it through two complete days!

It was almost like being a rock star. I walked around the corner of the school to gasps, and hearing my name over and over again. My old school friends hadn't forgotten me, which was clear since I was surrounded by people coming up to welcome me back. It's a weird feeling to try to pick up where you left off when it's been 2 years, something worthy of an episode of the Twilight Zone.

Physically, I'm exhausted. I'm in pain. And I'm constantly overheated since the class is not air-conditioned and it's hotter than India here right now. Which also means I'm constantly dehydrated. It's similar to the song about bones, except:

"The overheating is connected to the... dehydration.
The dehydration is connected to the... dizziness.
The dizziness is connected to the vomiting.
And around the loop we go". 

Yet I'm still lucky. I, at least, got to experience my first day alongside everyone else. There are some kids who don't get to have this experience because they're in the hospital, or at home too sick to go, or in some type of treatment room. For once I was able to do something so incredibly "normal", that it's often taken for granted by so many of my friends. Two years away from everything has taught me to be a bit more thankful for the "normal" experiences that I do have. I may not be able to run around the school-yard with my friends, join any sports teams, or even participate in some classes with my friends (I am not allowed to do gym, and I haven't had a french class since grade 4), but I'm at least there with them.

Being away from school so much over the last 4 years, also presents it's own challenges. For example, at my school we start learning to play instruments in grade 4. My instrument of choice was the french horn, which my mom went out and bought for me. Now, let's pause and consider my instrument of choice in terms of my health. I am constantly dizzy and nauseated. The french horn, for those who have never played, requires a great deal of air control and extremely strong lip muscles. When I start to play, within minutes my dizziness has me on the floor. Holding a note for an extended length of time....I won't say impossible but certainly difficult. So, because my music teacher has to start me off from scratch, she has given me the option of changing my instrument. Thankfully my mom owns most of the instruments already, so I have the flute, clarinet, alto sax, or piano to choose from. Now to decide what the least physically demanding instrument would be!

Anyway, the big thing is I made it through the first week. It's such a huge accomplishment for me!

8 Things I Say Instead of "It's Going To Be Alright" as a Parent to a Medically Complex Child

"Don't worry, it's going to be alright".

It's an innocent enough thing that we say that is meant to offer support and encouragement. When I was small and played with dolls, and my dolls had a boo-boo, this was something I said to them. My mother said it to me all the time when a problem came up. And when I became a mom, on the countless nights I spent awake with a sick baby, I would be whispering "It's ok" as I soothed him back to sleep.

I thought my job as a parent was to make things better. I'm supposed to be able to take any problem my child has and be able to work together to find the answer. I'm the boo-boo fixer, whether that boo-boo is physical or emotional. I'm the one who is supposed to be able to assure my child that everything is ok, that things aren't as bad as they seem, that any problem can be overcome with a bit of work. I'm supposed to be the super-mom, cape and all, that with a single wave of my magic wand, make everything good again.

This was my vision of motherhood, as I'm sure a lot of other soon-to-be-moms see themselves being like this too. For awhile, my life as a mother was a lot like this. Colds, ear infections, sore throats would come and go, and everything would be alright again. Growing pains would come and go, and then another period of "alrightness". I could easily soothe my growing boy, telling him "it's going to be alright".

But what about when you can no longer promise this? What happens when you can't honestly say that things are going to get better?

My days of motherhood are now spent playing a lot of other roles, but my primary one is still "boo-boo fixer". 9 years ago, Jacob was diagnosed with epilepsy. Then 4 years ago, he was diagnosed with severe Crohn's Disease. Since then, he's been diagnosed with anxiety, ADHD, severe psoriasis, Long QT Syndrome, eye inflammation, Ehlers-Danlos Syndrome/Joint Hypermobility Syndrome... He's in near constant pain, suffers multiple infections due to his immuno-suppression, and lives with daily vomiting and nausea. My vision of my role of motherhood, of being the one to help make it all right, has been completely changed.

I no longer tell my son that everything is going to be alright. That, in itself, is alright. Jacob knows enough about his medical situation to know that several of his problems have no cure, and can be difficult to manage. He was told that after he had his colectomy, things "would go back to normal, you'll be alright". That didn't happen. With each new medication we try that is supposed to "make things better" our hopes go up, only to come crashing down with severe side effects, or failure to help manage the disease it's supposed to treat. It is devastating to be promised improvement and then to experience this type of let-down. So we don't talk about things being alright in the future, instead we focus on the moment. The little things that we can do together to make each day a bit more manageable. Life has to go on, even when there is no magic wand. There's nothing "alright" with what Jacob lives with daily. There's nothing good that comes from watching your child suffer, other than the motivation it creates to keep fighting back.

How I see my job as a parent has completely changed. I no longer think that my job as a parent is to be able to take away his pain or to hide him from a painful reality. Don't get me wrong, I would give anything to be able to make him better, that still hasn't changed. My job though isn't to find a way though to take it all away, my job is to help my son to develop the skills to cope with the challenges that life has brought his way. My job isn't to protect him from all of the world's horrors, but to teach him to understand them so that he isn't afraid and to allow him to find his own way of making them better. My job is to help him appreciate the small things in life, to celebrate the small successes, and to focus on the moment rather than the long-term bigger picture.

I've watched my son grow in so many ways during his many medical crises, he's actually the one who is teaching me what it means to be a parent. Every time he has to have a painful procedure, and there's been many, he teaches me about bravery. Every time he has to try something new, something scary, he teaches me about courage. He's taught me what it means to be strong, to never give up on hope, to keep going no matter the size of mountain in your way. He's taught me about generosity through his fundraising and efforts to make a difference in this world. Most of all, he's taught me about life and love. I don't need to fix Jacob, he's the one who has fixed me. He's the one who's made me the best mom I could be to him, and also a better person. Things might never be the typical definition of "alright" so instead I say:

We can get through this.
You are so strong and brave, you can do it!
Just keep swimming.
Hold on.
This is just one moment, the next might be different.
Keep trying, keep hoping, keep dreaming.
Live for the moment, in the moment.
You are not alone.

Four Years Later

Four years. Four years ago, I received a diagnosis that has changed my life. It's taught me a lot about strength, survival, and fighting on even when met with disappointment after disappointment. It's taught me hope, love, friendship, patience. Four years ago, I was diagnosed with severe Crohn's Disease.

Actually, I should correct that. Initially I was diagnosed with severe Ulcerative Colitis. See, Ulcerative Colitis (UC) and Crohn's Disease, are both forms of Inflammatory Bowel Disease (IBD) but can be very difficult to tell apart. Ulcerative Colitis, effects just the colon (large intestine), whereas Crohn's can be anywhere in the digestive tract. In my case, the inflammation that they saw when they did my colonoscopy was limited to my colon, and since I didn't have any non-intestinal symptoms of Crohn's, or granulomas present, they believed that I had Ulcerative Colitis. Unfortunately, 4 years hasn't changed the fact that it's still very difficult to tell the two diseases apart, and many are still misdiagnosed.

In 4 years, I've had so many treatments and procedures that it's overwhelming. I've been to the OR 15 times. At one point I was taking handfuls of 18-19 pills at a time. I had a colectomy (removal of the colon), donated my colon to research and gained a fancy bag out of the deal for collecting poop. Each medication brought new side effects, some of them tolerable, some of them a nightmare, but treatment after treatment failed to control my Crohn's and I kept getting sicker and sicker. Four years, and it's still often trial & error to find the right combo that works for the patient.

After 4 long years, my Crohn's is finally starting to get under control. That doesn't mean that I'm "better" though. I will live with this for the rest of my life, or until there is a cure. Remission is an awesome thing to achieve, but it can so easily take a turn the opposite way. I'm focusing on the fact that at least my Crohn's is now controlled so that we can look at what else is going on with my health (because the answer to that is A LOT). But that's a whole other post...

The main thing I want to share with others is HOPE. After my colectomy, things were looking so bad inside that at one point, the doctors were thinking I might have to have a major part of my small intestine removed. The doctors were stunned at just how bad it was. After the Remicade dramatically failed, leaving me with bleeding psoriasis all over my entire body, I did worry that we'd never find a treatment that worked. I worried about my future and what it would be like. Would I still be able to achieve my dreams of being a scientist (physics, chemistry) if I couldn't regularly get to school because of this? Would I always have to spend the majority of my time with doctors and nurses? The Stelara injections that the doctor started me on were, and still are, quite new to treating IBD, and not always effective. But taking a chance to see if it helped without major side effects was worth the risk compared to doing nothing. A year later and I'm no longer at risk (at the moment) for losing part of my small intestine! In fact, things look almost normal inside! There is HOPE. Sometimes it's the things that you're least confident in doing that will give you the results that you want. Keep trying. Failure is not failure so long as you get up and try a different approach. Keep moving forward. Change is scary, but if you don't make changes, things likely stay similar to the situation you're in now. Keep your head up, it does take time to find the right combo of treatments but when you do, it's a major accomplishment. You CAN do this.

A HUGE Thank You to the Ladies of Leaside Curling Club

Kindness. Generosity. Philanthropy. Charity. These are words that matter, words that will make our world a better, more gentle place for everyone. The wonderful, amazing Ladies at Leaside Curling Club have all of these characteristics, and then some.

I was honoured to once again be chosen by these ladies to have Jacob's Healing Rooms be the recipient of their annual end-of-the-season charity golf banquet. Jacob's Healing Rooms is my vision to create a more child-friendly place at Sick Kids Hospital for short-stay treatments, such as regular IV medication infusions. This is my dream and how I want to be remembered, as the person who did something positive to change other people's lives. It may be my dream, but it takes a whole village to make my dreams into a reality. I've heard a lot about how the curling community as a whole loves to help out special causes, and I've been so fortunate enough to experience this with not only Leaside Curling Club, but also the Whitby Curling Club and Oshawa Curling Club too! The response from the curling

community has been so overwhelming, but in a good way!











Our event was held on May 31 at the gorgeous Thornhill Golf and Country Club. The first thing that I immediately noticed was that a lot of the ladies and the staff were wearing my Jacob's Healing Rooms t-shirts! It was so touching to have people believe in my cause so much that they were
wearing t-shirts to promote it. I was so thrilled to be able to speak to the ladies about how Jacob's Healing Rooms will help children to heal and life as a child with a chronic disease. I hope that I was able to inspire at least one other person to go and make their own positive change in this world.

Thank you ladies for once again showing me what kindness can do. Together we raised just over $5000, which will go a LONG way towards making my dreams come true. We still have a bit to go, but you all have reminded me that if you can dream it, you can make it happen with a lot of work.




You can read more about my Jacob's Healing Rooms plans by clicking HERE.

It's Time to Get Gutsy!

On Sunday June 5, my team, Awkward Guts, and I will be walking in the 5km Gutsy Walk! The Gutsy Walk is the annual walk held to raise awareness and research money for Crohn's Disease and Ulcerative Colitis. This will be my 3rd year participating.

Why is this walk so important to me? Because I have severe, refractory Crohn's Disease. Sadly, I am part of the fastest growing age group to be diagnosed with Inflammatory Bowel Disease. I was diagnosed 4 years ago this month, when I woke up one day in severe pain and started pouring blood. It took the doctors about 3 weeks to figure out what was going on, as everyone we consulted thought I just had a bad stomach bug. Oh how I wish that was the case here.

Following my diagnosis, I was started on a lot of different medications to try to get this disease under control. The longer a person has active inflammation, the higher the risks of cancer mutants showing up, so controlling the disease is key in this whole battle. Within 3 months of getting my diagnosis, my disease was so bad that it had destroyed my colon, and we were consulted about our surgical options. It was becoming clear to everyone that I would need to have a colectomy and ileostomy created for my poop.

My battle continued after my colectomy and we started throwing more potions and pills at it. Each new treatment left me with side effects that were serious enough to lead to me stopping that
treatment. I'm also not alone when it comes to side effects. For example, 20% of people who take Remicade will develop psoriasis as a result. I was in that group, my body after Remicade was 70% covered in painful, itchy spots. It makes you wonder whether the medication's side effects are just as bad as the symptom it's managing (it's not, but it makes you wonder sometimes). I also started having liver problems, eye inflammation problems, joint pain. There's so much more that goes with Inflammatory Bowel Disease other than just bloody poop.

In Canada, the "three biggies" for pediatric Crohn's Disease are Remicade, Humira, and Imuran. I've taken the Remicade and Humira, but bloodwork has shown that I wouldn't be a good candidate for Imuran. So when my Remicade infusions caused the psoriasis, we had to go for an option that hasn't been used an awful lot - Stelara injections. I've now been on Stelara for a year, and later this month we will learn if it is working to control the inflammation. Unfortunately, I've had some challenges pop up that make me think that it might not be working that well.

Those are my treatment options in Canada, meaning that we're at the end of the road here. The Gutsy walk means HOPE to me. The funding from the day will go to research programs to help find a cure for this disease. And that will go a long way towards preventing other kids from going through similar battles as I have. If you'd like to donate, please click the link below.

Jacob's Gutsy Walk Page

#MyGivingStory - Giving Tuesday Plans to Help Sick Kids.

#MyGivingStory starts with a diagnosis. In July 2012, at the age of 8, I was diagnosed at The Hospital for Sick Children (Sick Kids) with severe Crohn's Disease, a type of Inflammatory Bowel Disease. Over the next 3 years, I would have many ER visits, hospitalizations, medical appointments and have been wheeled into the Operating Rooms 13 times. One of those visits was to lose my colon which I donated to science to help find a cure for this disease so that others wouldn't have to go through these struggles.

Last winter, I was receiving Remicade IV treatments again. Remicade is one of the medications that is often used once a patient has failed to respond to other medications. Patients at Sick Kids will be started on Remicade infusions as an out-patient, and receive their first 3 sets of infusions in the group treatment rooms. Here's what the treatment rooms look like:

As you can see from the pictures, the rooms are very plain, and do little to offer distractions from the medical treatments or a source of entertainment for the kids. There are two televisions suspended from the ceiling but they are out of the control of the kids since the remote is attached to the bottom of them. And there's always a problem on agreeing what to watch since the person sitting next to you might not like what you want to watch. I've spent 8 hour days in rooms like this while getting my IV treatments.

If there's one thing I learned through my journey, it's that distractions help in the healing process. They can take away the anxiety that you feel when getting treatments, the worries about whether it's going to work, distract from the pokes and the pain. Having a positive outlook helps greatly in the healing process. When you are feeling "down", the pain and other symptoms can make you feel even worse. Feeling encouraged, supported and hopeful are extremely important in the healing process since the disease effects us emotionally as well as physically. So I came up with a plan to help make this happen.

I asked my mom if for Christmas I could ask for the ability to transform this place into a child-friendly place of healing and hope and the plan for Jacob's Healing Rooms was created.

For #MyGivingTuesday I'm asking for $1 donations to Jacob's Healing Rooms. Your money is going to help me to install tablets at each treatment chair so that patients will have a source of entertainment, be able to connect with other patients in the hospital and across Canada using UPopulis, check their e-mail and of course, play games. In each room, I'm going to purchase a colorful bubble-tube machine as a source of distraction and brightening up the room. I'm hoping to get a fresh coat of paint in a relaxing color (I find the yellowness of the room hard to look at), and put cloud panels covering the lights.

This past June I had a medical crisis that reminded me that life was short. I have been having some problems with the electrical activity in my heart. This has only renewed my determination to make a difference in this world and in the lives of other sick children. Jacob's Healing Rooms has become my #BeforeIDie wish.

Your $1 could help me make this wish come true. It could bring a smile to a sick child's face, give hope for a brighter future, and inspire others to make a difference in this world. Your $1 could make these rooms amazing child-friendly places of healing. Your $1 could take the stress off of parents who are also worried about their child and struggling to distract them during the long treatment day.

This #GivingTuesday please think of Jacob's Healing Rooms and make a $1 donation to help make my wish to help other sick kids come true. And please share my story with as many others as possible. Together we can make a difference.

Here is the link to my Sick Kids Donation Webpage: Jacob's Healing Rooms Giving Tuesday Donation Link
You can follow my story on Facebook: Jacob's Healing Rooms Facebook Page
And I'm on Twitter: @KidWithCrohns
And on Instagram: @JacobsHealingRooms

Bad to Worse to Horrific: The Graphic GTube Story

This is a post that I wasn't going to write. It's a post about how we all deserve to know exactly what is in the products that we rely on to maintain our health. Sure, pharmaceuticals and supplements have to list their ingredients, but beyond that, it's really hit and miss. I am going to give a very clear warning right now, right here: If you are squeemish, if you have a weak stomach for graphic pictures:

THERE ARE VERY GRAPHIC PICTURES AHEAD

This is a NG Tube
I had it for 9 months.

The "What's Eating Jacob" saga goes back in history quite a bit. It goes back to when I had my first NG tube (nasal-gastric tube for feeding). Even though obviously having a tube shoved up your nose is going to be a weird sensation for anyone, it was more than that for me. I had daily pain in the upper part of my nose and the back of my throat from the NG tube. I would get frequent nosebleeds and always had a constant sore at the corner of my nose where the tube touched flesh. The doctor at the time attributed the nosebleeds to just dryness and irritation from the tube, so said that I should just use some nasal mist to keep things moist in there. I never said anything more about it. 

How it started

Fast forward to November 2015 when the team decided that it would be best if we replaced the NG tube with a semi-permanent GTube (an implant into your stomach). Two days post surgery, I broke out in a widespread rash on my stomach and chest. It was so itchy and spreading so quick that the team thought that I had chicken pox. I ended up in the lock-down infectious disease ward for a few
weeks on IV anti-virals just in case it was chicken pox. I was also taking the anti-histamine medication Atarax for the itch. The team determined that I didn't have chicken pox and I was discharged home with a few weeks worth of Atarax while the rash went away. 

This is actually an improvement.
Picture taken about 2 weeks after insertion

Once the Atarax was over, where-ever the tube touched my skin would actually eat troughs through my skin where I would have to pull the line out of the "groove" which wasn't the nicest of things to do. But we came up with a solution for this, use DuoDerm (it's a special type of dressing that forms like a second skin) under the line and then tape it down. I no longer had problems with the line eating my skin after that, it was just around the opening where the tube touched that was raw and bleeding. The team said that I was likely reacting to one of the materials in the line, I was given Atarax again, and told to wait the 6 weeks from the date of surgery before we could swap it out. 

6 long weeks. 

My Mickey with granulation tissue
problem

At the start of January, almost like a delayed Christmas gift, I had a new type of tube inserted, a low-profile MicKey button that sits pretty much flush against my skin. I was on Atarax at the time it was inserted and thought that things were going better. I mean, it had to go better than the last tube experience, right? 

Not so much. 

Worsening rash & reaction

I took the Atarax for the first few weeks after changing the tubes over, which helped to keep "stuff" from happening. Then I ran out of medication. We were going to see what happened. What did end up happening was another rash and a lot of granulation tissue (tissue the body sends out to heal an area) forming that was bleeding around the entrance to the stomach. I went back on Atarax and things improved for awhile. Until the dam burst. 

For the past few months, this area has been nothing short of torture. As you see in the pictures, I have a huge raw, bleeding and painful area around the tube. I start bleeding just with air exposure, but when I have to put up with the cleanings... yowzers. Things just keep going from worse to worse. 

My medical team believes that I'm having a reaction to the materials in certain medical supplies such as the tubes, some bandaids, Tegaderm film that is used to secure IV lines. My dermatologist sent a referral to an allergist for patch testing to determine what it is I'm reacting to. Then things started to take a weird, interesting and horrific turn.

The allergist called back and said that the dermatologist needed to supply a list of ingredients from the potential list of offending medical supplies before he could see me. It makes sense, in order to test for something you need to first have a list of potentials to test for. You can't just test every substance known to mankind. 

You would think that this list of ingredients would be available, after all these are healthcare products we're talking about. Would it shock you if I told you that that isn't the case? Would you believe me if I told you that medical product ingredients are extremely hard to track down? Even my doctor was met with resistance when she tried to find out what these tubes were made out of. 

My mom decided to try to track down the secret ingredients listings for some of the medical products I use daily. She called the makers of the actual products for my feeding tubes, as well as for a few of the dressings I use. Here's an example of the difficulties we faced: 

My mom called one company and asked for customer service. She explained the situation and asked to find out what exactly it was made of. Customer service replied that they did not know, and that she should call product development. They transferred her to someone else. That person said that she needed to call Customer Service in Canada (because we're Canadian) and they could help us. My mom called Customer Service again, who initially told her that any of the vendors could answer our question better, but then told us to call Product Tech Support. Yes, they have tech support even for medical supplies. The Product Tech Support, who you would think would know their product the best, was unable to find the answer for us. But he said that he would try to track down the information and call us back. When he called back all he said was "I spoke to the PRODUCT ENGINEER who didn't know the exact ingredients and couldn't confirm one way or the other if the product contained silicone" (The dermatologist believes it might be a reaction to silicone because that's the one thing we know for sure each product has in common). So, the product engineer, the one who actually physically makes the product doesn't know the ingredients? Mind-boggling. Perhaps, just perhaps, things might have moved faster if this information was publicly available. I think that anything that is used in healthcare supplies should have to have a product ingredient list available to the public. Anything short of full disclosure can seriously impact lives, I'm living proof of that. 

What it looks like now

Meanwhile, I'm left in a bloody mess and last week managed to contract yet another infection in the open, bleeding, seeping wound. I'm in so much pain that I have tears rolling down my cheeks often. I suffer through hourly cleanings to try to prevent it from worsening and new infections from developing. Something needs to be done!

Next week I'll be going in for scopes to see what kind of internal damage this tube is doing to me. It's suspected that there's likely problems on the inside too given how severe the reaction is on top. There is another tube available, but they want to make sure that I'm not allergic to the materials of it, so they've referred me for patch allergy testing. Unfortunately, I got the worst news ever about that today, it's not until the end of June. I can't imagine living in this much pain until sometime after that appointment. See, that appointment is just the consultation, then I'll have to wait for the actual testing to be done. Help seems so very, very far away right now.

It's my hope that sharing this, even though it's graphic can help other people. I can't be the only one who has ever experienced something like this. Perhaps if my team is able to pinpoint the answer, then perhaps my story might help someone else who is experiencing this. I also hope that this can bring light to a bigger problem: the problem of full disclosure in healthcare. As someone who has to purchase products to supposedly benefit my health, don't I deserve the right to know what is in the products that I am using?