Robbie's Rainbow

Attention, all superhero parents of young adults living with Inflammatory Bowel Disease (IBD)! Prepare to level up your support game as we guide you through the exciting transition from pediatric to adult IBD care. Mark your calendars for Wednesday, May 31st at 7:00 PM (EST), the YACCC is delivering an educational session "Transition: Empowering Teens Through Adult Care". Guest presenters are nurse practitioner Karen Frost, MN, NP from SickKids, and the one-and-only parent extraordinaire, Kate Murray, who has conquered the challenges alongside her teen. They've got the knowledge and experience to share!

Don't miss this chance to empower yourself and be the ultimate support system for your teen. Together, let's conquer the world of IBD transitions!

Registration Link: https://lnkd.in/gqmBW8jx
Question Submission Form: https://lnkd.in/gHdivf_N

Teenagers with IBD often have a difficult time transitioning from pediatric care to adult care, which typically happens around the age of 18. A new study explores a way to improve transition using a biopsychosocial approach, with a specific goal of improving patient function, transition readiness, and outcomes among transitioning adolescents and young adult patients with IBD being cared for at pediatric centres in Canada. This is an exciting initiative that will help improve care for teenagers with IBD at this challenging juncture in their lives.

Read more in this excellent article co-written by a number of Robbie’s Rainbow’s medical expert collaborators: https://bmcgastroenterol.biomedcentral.com/articles/10.1186/s12876-022-02307-9

When it comes to monitoring IBD in pediatric care, new research findings suggest that intestinal ultrasound use could be a new best practice. The research shows that ultrasounds can identify patients with endoscopic recurrence and possibly predict disease outcomes and treatment response.

“This is a noninvasive tool that’s more accurate than the standard biomarkers or clinical symptoms, and we use it regularly at the point of care without needing patients to fast, without any preparation, and in five minutes we can see if there’s Crohn’s disease recurrence,” said Michael Dolinger, MD, MBA, an advanced pediatric IBD fellow at the Susan and Leonard Feinstein IBD Clinical Center at Mount Sinai.

Learn more here: https://www.gastroendonews.com/Inflammatory-Bowel-Disease/Article/05-22/Ultrasound-IBD/66851

As we shared last week, stress and IBD are intricately linked — and this can be challenging for children diagnosed with a digestive disease.

However, a fascinating new study has shone new light on the connection, and showed that a clear mind can lead to a happy colon. In other words, the connection goes both ways. Not only does an IBD diagnosis contribute to psychological stress, but psychological stress can have a detrimental effect on individuals diagnosed with IBD. As such, lowering an individual’s psychological stress could help improve the outcomes of IBD.

Learn more here: https://www.cureus.com/articles/89737-stress-and-inflammatory-bowel-disease-clear-mind-happy-colon

And for tips on managing psychological stress, especially in children, visit our website to access a variety of resources, including a guide to mindfulness, managing depression and sadness, preparing for clinical appointments, and more: https://www.robbiesrainbow.ca/resources/education-guides/

We’ve talked before about the importance of psychosocial support for children with celiac disease and other digestive diseases, because we believe this is such an important topic. And as May is Celiac Disease Awareness Month, it’s the perfect time to bring more awareness to the challenges that kids with celiac disease face, and the importance of getting them the proper support — not just at the doctor’s office, but in terms of support from family and friends or perhaps from a psychologist, social worker, dietitian, or other health care practitioner.

Kids with celiac disease and other digestive illnesses risk feeling isolated or lonely. They’re also at risk of increased anxiety, depression, and sadness. Fortunately, there are many forms of community and peer-to-peer support available.

Read more here: https://healthier.stanfordchildrens.org/en/psychosocial-support-for-children-with-celiac-disease/

And visit our website to learn more: https://www.robbiesrainbow.ca/depression-and-ibd/

Today is World IBD Day, a day that unites people worldwide in their fight against inflammatory bowel diseases, including Crohn’s disease and ulcerative colitis. World IBD Day is led by patient organizations, including Robbie’s Rainbow. As the only Canadian children's charity dedicated to improving the health and quality of life of children living with IBD, we’re proud to be part of this important initiative.

Today, over 50 countries on 5 continents will be working to raise awareness about IBD, to urge governments and health care professionals to take action, and to show support for the 10 million people worldwide who live with IBD.

Please help us in recognizing World IBD Day. Drop a purple heart in the comments below, share this post, and help to spread IBD awareness in your community.

Inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, is a lifelong disease that requires personalized treatment. It’s important for children with IBD to receive the treatment and care they need, because IBD can lead to a variety of negative consequences down the line. These include:
* Growth impairment
* Arthritis
* Skin conditions
* Inflammation of the eyes
* Liver and kidney disorders
* Bone loss
* Increased risk of intestinal cancer
* Intestinal strictures causing bowel obstruction
* Intestinal perforation causing fistulas and abscesses

While there’s no permanent cure for IBD, proper care and treatment can help keep children’s symptoms under control and reduce the risk of these long-term effects and complications. And that’s why we work so hard to ensure that every Canadian child can access the care they need, regardless of cost and other barriers.

All kids should feel like superheroes — bold, brave, adventurous, and invincible. At Robbie’s Rainbow, we believe strongly that no child or family should feel unsupported or alone, or go without the IBD treatment and care they need.

Our advocacy and education efforts range from supporting pathways to access safe and effective medicines for children diagnosed with Crohn’s disease and ulcerative colitis — as well as other digestive diseases, such as gastroesophageal reflux disease (GERD), Celiac disease and Eosinophilic Esophagitis (EoE) — to providing these young patients and their families with the health information they need to make informed decisions about their digestive health and strategies to improve their quality of life. We’re also working to provide children, teens and families with resources that are easy to understand, tools that improve disease management, and strategies to live beyond one’s diagnosis with confidence while advocating for the health needs of our community.

Can we support you? Send us a DM to get started.

Did you know that we have a range of printable resources on our website? From apps to help manage IBD and other digestive diseases in children to info about diet, depression, biosimilars and more, we’re here to support families and children living with digestive disorders. Visit our website to access our resources: https://www.robbiesrainbow.ca/resources/educational

“Normal” stool elimination varies from person to person, but the healthy norm is generally considered to be 1-3 times per day, with even 3 times per week considered OK by many health care practitioners. Constipation is a condition in which a person has uncomfortable or infrequent bowel movements. Generally, a person is considered to be constipated when bowel movements result in the passage of small amounts of hard, dry stool, usually fewer than three times a week.

When the colon's muscle contractions are slow or sluggish, the stool moves through the colon too slowly, resulting in too much water being absorbed. Some of the most common causes of constipation include:
* Medications
* Lack of exercise
* Not enough liquids
* Not enough fiber in the diet
* Irritable bowel syndrome
* Irritable bowel disease

While IBD (including Crohn’s and ulcerative colitis) are often associated with multiple daily bathroom trips and loose stools, constipation is also a common IBD symptom.

Talk to your doctor to learn more if your child is experiencing constipation.

Connection, communication and honesty matter when it comes to engaging with your child’s teacher or school. When your child has a chronic disease like IBD, it’s important to work together with their school to ensure they feel safe and successful at school.

On our blog, we’ve got tips and advice from teacher Katie McBeath, who teaches grades 7-9, on how best to build connection and communication between parents and their child’s education team. This is a must-read for those seeking to make a strong, lasting parent-teacher relationship to support their child living with IBD.

Read more here: https://www.robbiesrainbow.ca/connection-communication/

Did you know that it’s estimated that over 8,000 children in Canada have been diagnosed with Crohn’s disease or ulcerative colitis and that one in 10,000 children have eosinophilic esophagitis (EoE), one in 1,000 children are affected by celiac disease, and 56,000 Canadian children are estimated to be diagnosed with gastroesophageal reflux disease (GERD) every year?

Chances are that one of these five diseases affects you or someone you know or love.

You can make a difference by helping Robbie’s Rainbow improve the lives of children and teens living with a digestive disease. When you fundraise for our organization, your donated dollars will help children in need of critical treatments access essential treatments and support children, teens and families through our education programs and resources.

There are many fun and easy ways to fundraise for Robbie’s Rainbow in your community. Learn more by visiting our website: https://www.robbiesrainbow.ca/ways-to-help/fundraise/

Short bowel syndrome affects both people who have had portions of their small intestine surgically removed and people whose small intestines were partially missing or damaged at birth.

In the former case, patients who may have had parts of their small intestine surgically removed include people living with Crohn’s disease, amongst other conditions.

Short bowel syndrome impedes patients from receiving enough nutrients from their food, since nutrient absorption happens in the small intestine.

Short bowel syndrome treatment typically involves special diets and nutritional supplements and may require nutrition through an IV infusion (parenteral nutrition) to prevent malnutrition.

Signs and symptoms include:
* Diarrhea
* Greasy, foul-smelling stools
* Fatigue
* Weight loss
* Malnutrition
* Swelling (edema) in the lower extremities

If you think this could be your child, talk to your doctor.

Celiac disease — a digestive condition triggered when gluten, a protein found in wheat, barley and rye, is eaten — is on the rise in children.

Know the symptoms to watch for:
* Poor growth or weight loss
* Lack of appetite
* Stomach aches or bloating
* Diarrhea
* Fatigue or irritability
* Iron deficiency

It’s important to note that some people who have celiac disease may not show any gastrointestinal symptoms. In fact, almost 50% of people with celiac don't present with any symptoms.

Visit our website to learn more about celiac disease and what to do if you suspect that your child or teen may have it: https://www.robbiesrainbow.ca/what-is-celiac-disease/

Gastritis refers to a group of conditions that involve inflammation of the lining of the stomach. What causes it? A variety of factors can play a role, including infection with the same bacterium that causes most stomach ulcers, the regular use of certain pain relievers, and over-consumption of alcohol. However, it’s important to note that gastritis can also be connected with certain medical conditions, including Crohn’s disease and celiac disease.

Gastritis doesn’t always cause symptoms, but when it does, symptoms may include:
* Gnawing or burning ache or pain (indigestion) in the upper abdomen that may become either worse or better with eating
* Nausea
* Vomiting
* A feeling of fullness in the upper abdomen after eating

Gastritis can lead to stomach ulcers and stomach bleeding if left untreated, so know what to watch for and when to see a doctor.

Having a child diagnosed with IBD can be overwhelming. The number of tests, doctor visits, and medications add up quickly, and as parents, we want to do everything we can to help our children feel well — although it’s not always a simple path.

If you’ve wondered about the difference between mono vs. combo therapy in IBD, we’ve got a blog post that breaks it down. Mono therapy is when an anti-TNF agent is taken alone, with no immunomodulator, while combo therapy is when an anti-TNF agent is combined with an immunomodulator. Learn more on the blog: https://www.robbiesrainbow.ca/mono-vs-combo-therapy-in-ibd/

Recent research has uncovered a potential cause of inflammatory bowel disease (IBD)!

IBD is becoming increasingly widespread. Until now, however, the underlying causes of the inflammation responses were unclear. Scientists at the Technical University of Munich have now identified a mechanism that triggers a problematic interaction between intestinal bacteria and cells in the intestinal mucus layer in XLP2, a condition associated with IBD. The team believes that the results can be applied to other intestinal diseases and could offer approaches to the development of new drugs.

Read more here:
https://medicalxpress.com/news/2022-02-inflammatory-bowel-disease.html

Microscopic colitis: is it the same as ulcerative colitis, and therefore a form of inflammatory bowel disease (IBD)? The answer is no.

Microscopic colitis is inflammation of the large intestine (colon) that causes persistent watery diarrhea. This condition is known as "microscopic" colitis because physicians usually can't see the inflammation without a microscope.

It’s not clear what causes this inflammation. Microscopic colitis is usually found in older adults (ages 50-70) rather than children, and affects women more than men as well as people who have an autoimmune disorder and who smoke. The condition is treatable and does not increase your risk of colon cancer.

Did you know that almost 50% of people with celiac disease don't present with any symptoms?

Celiac disease is a digestive condition triggered when gluten, a protein found in wheat, barley and rye, is eaten. For those with celiac disease, their body responds to ingested gluten by producing antibodies that attack tissues in the small intestine, causing damage specifically to the villi, which are small, finger-like projections in the small intestine that are specialized for absorption.

Because of this, it becomes very difficult for the body to absorb nutrients for people with celiac, which can lead to health problems such as malnutrition.

If you suspect your child or teen has celiac disease, talk to your child or teen’s doctor.

Visit our website to learn more: https://www.robbiesrainbow.ca/what-is-celiac-disease/

As children living with IBD grow up, there comes a point in time when they must transfer over from pediatric care into the adult health care system. This usually happens when the youth is around 18 years of age. Navigating this transition can present some challenges. Change can be scary for everyone, after all!

For example, youth may suddenly have a new team of healthcare providers, a new hospital or clinic to visit, and a new schedule or routine. This can be a lot to get used to.

Most importantly, however, children transitioning into the adult health care system should have a good understanding of their condition, their health history, and any ongoing issues. This is because in adult care, it’s expected that patients will make decisions and manage their health independently. Help prepare your child for the transition by encouraging them to become knowledgeable about their treatment and health history, and comfortable with independently managing their medications, scheduling their appointments, and making healthy lifestyle choices.

If you or your child are dealing with a digestive illness, you may have come across the term “dyspepsia.” Dyspepsia is another word for indigestion, essentially — discomfort or pain that occurs in the upper abdomen, often after eating or drinking. It is not a disease but a symptom. Common symptoms include bloating, discomfort, feeling too full, nausea, and gas.

Did you know that dyspepsia is a common problem, affecting up to 30% of the population? So if your child is suffering, you’re not alone. However, dyspepsia can be a sign of bigger problems, like gastroesophageal reflux disease (GERD) — so it’s important to monitor and to mention to your doctor if it persists.

We spoke to Robbie about how starting Robbie’s Rainbow with his mom, Kate, has impacted his life.

“Starting the charity has definitely had a positive impact on my life,” says Robbie. “Being involved in a charity so young, you get a point of view that not a lot of people have. I was faced with the reality that the world isn’t the most perfect place, but it allowed me to be more open-minded, caring, and understanding. I think that my being involved in charity so young has given me an inherent need to help. With me wanting to pursue criminology and just generally the way I am, I think it has really given me a sense of purpose and a determination to do the best for anyone that I can. From a very young age I understood that the world can be a little bit dark, but that the only person that’s going to be able to bring a bit of sunshine to it is yourself. And you have to try to be the one to do that.”

Hemorrhoids occur when the veins or blood vessels in and around the a**s and lower re**um become swollen, irritated and enlarged. This happens when there is extra pressure on these veins. Hemorrhoids can be either inside your a**s (internal) or under the skin around your a**s (external).

Hemorrhoids can be caused by and complicated by a variety of digestive issues, including:
* Straining during bowel movements
* Sitting on the toilet for long periods of time
* Chronic constipation or diarrhea

They can also be caused by:
* Eating a low-fiber diet
* Weakening of the supporting tissues in the a**s and re**um that happens with aging
* Pregnancy
* Often lifting heavy objects
* Chronic liver failure

Hemorrhoids in young children are rare, but may still occur. Fortunately, treatment for hemorrhoids is available — but make sure you seek care if your child is suffering from them.

Kate Murray, founder of Robbie’s Rainbow along with her son Robbie, is proud to be a member of the Hospital for Sick Children (SickKids Foundation)’s Family Advisory Network. As the mother of a child with IBD, Kate works hand-in-hand with SickKids to bring her voice to the table, share her and Robbie’s experiences navigating care, and provide input into the design of SickKids’ services and spaces, and in priority-setting and policy-making.​

The Family Advisory Network is a group of patients, family members and caregivers who volunteer their time in person and from home to make SickKids a better place. Advisors provide a unique perspective and make a difference at all levels of the hospital. For example, they can impact the way staff care for patients at the bedside, advise on the design of SickKids’ spaces, and lead discussions in development of hospital policies and procedures.

You can’t have a rainbow without some rain. The incident that prompted Kate and her son Robbie to start Robbie’s Rainbow was sad and painful — and it’s forever etched in Robbie’s memory.

“I think I was about 7 or 8 years old at the time,” recalls Robbie. “We had gone to SickKids for an experimental, life-saving treatment I was receiving. While I was getting my IV, we heard crying and begging from the next room. It turned out that it was a woman with her child, who was around the same age as I was and who needed the same treatment — but their family was unable to afford it. Since this drug hadn’t been approved for use in children, it wasn’t covered by OHIP.”

The moment impacted Robbie and Kate deeply. “I remember offering to share the medication I had, because it didn’t make any sense,” says Robbie. “I couldn’t comprehend why someone wouldn’t be able to get something they needed. No child deserves to go without treatment. That moment was what kick-started everything. It was a very tragic start but we were able to prevent a whole lot more situations like that.”

And from that rainy day, Robbie’s Rainbow was created.