Service dogs are specially trained to help people with disabilities, including people with Crohn's disease.  Under the Americans with Disabilities Act (ADA) service dogs are allowed in public places like restaurants, schools, stores, and airplanes. Service dogs offer emotional support and can help with important tasks that are challenging during episodes of pain or fatigue.  Typical daily tasks that a service dog can be trained to help with  are:

• Carrying heavy items like backpacks or books
• Opening doors
• Switching lights on and off
• Fetching items such as a cellphone 
• Reminding to take a medication

Some patients report that their dogs also can recognize symptoms of a flare, sometimes before their owner does.  Another important benefit of service dogs is that they encourage their owners to be more active. Like all dogs, service dogs need exercise and playing with their owner outdoors is a great way to get it.

Determining whether a service animal is right for your child also requires careful consideration of whether your family is ready to take on the costs, new routines, veterinary care, and special training required to integrate a dog successfully into your home. 

To find out if a service dog might be right for your family, talk to your doctor and consult an accredited member of  Assistance Dogs International.

​Explaining inflammatory bowel disease (IBD) to a child is not easy. It's normal for kids to have lots of questions, but sometimes difficult for them to understand the way adults talk about the disease. To help kids learn more about what is going on, the Crohn's & Colitis Foundation (CCF) brought together a writer, artists, and medical professionals to create a comic book all about Crohn's and colitis, "Pete Learns All About Crohn's and Colitis." 

The colorful comic includes a glossary of commonly used medical terms, symptoms, and tests, and covers helpful topics such as what the intestines do, tips for taking medications, coping with embarrassing symptoms, and how to talk to friends about the disease.  Reading the comic together is a great way for parents and children to start a conversation about any concerns or questions they have about having IBD.  

A digital version of the comic is available for free on the CCF website.  

Being in the hospital is no fun, but the day is a little brighter when someone shows they care with a thoughtful gift. Any thing that makes the stay more comfortable or help pass the time is welcome.  After spending many months in the hospital I'm somewhat of an expert patient, so I'm sharing here some of the great gifts people sent.

While I was in the hospital my parents spent hours playing with dolls, but not for fun.  The doll was basically my stunt double, allowing my parents to practice the complicated process of changing my parenteral nutrition infusion, setting the dosage correctly on the pump, and changing the dressings the PICC line insertion in my arm.  The expectation is that once I was discharged, my parents would take over from the nurses and be responsible for this daily process at home. Fortunately for all of us, I was able to start eating solid food again before I went home, but we'll never forget PICC baby.

For more information about PICC lines visit https://www.mayoclinic.org/tests-procedures/picc-line/about/pac-20468748

The Summer 2019 issue of MIT Spectrum reports on the travels of several MIT post-doctoral students who traveled to Malaysia in search of microbiome samples from indigenous villagers of the Batek tribe.  Collecting the samples proved to be challenging, as skeptical villages unaccustomed to toilets, not to mention observers, were unwilling to  put their personal habits on display.  Fortunately an accommodation preserved the villagers' privacy while allowing the researchers to locate stool samples.

Although it sounds at first like an odd undertaking, the fact is that the Batek tribe living in the forest more than 250 miles from the capital in Kuala Lumpur offered a unique microbiome.  As nomadic hunter-gatherers, the Batek tribe's microbiomes are the result of a diet free from processed food, and untouched by the vaccines, antibiotics, and chemicals that affect the microbiomes of those living in the industrialized areas of the globe.  

The successfully harvested samples were taken to MIT's Center for Microbiome Informatics and Therapeutics (CMIT) for further study.  Launched in 2014, CMIT seeks to research the human microbiome to understand better its role in the diagnosis, treatment, and prevention of diseases like Crohn's Disease and Ulcerative Colitis.  


Source:  Halber, Deborah, "Going for the Gut," MIT Spectrum, Summer 2019 Issue, available at:  https://spectrum.mit.edu/summer-2019/going-for-the-gut/

Most everyone knows, or should know, that orally administered antibiotics destroy vast numbers of both the good and harmful bacteria that comprise the microbiome.  Recent research has shown that the microbiome is also vulnerable to more than two hundred other medications that are not specifically antibiotics, like blood pressure medication, antihistimines, and painkillers.

The research, undertaken by the European Melocular Biology Laboratory in Heidelberg, Germany, was made possible by new techniques that permit the culture of anaerobic bacteria that live only in the absence of oxygen -- like those in the microbiome.  

The research also found that the same bacteria that were resistant to antibiotics were also resistant to adverse effects from other medications.  An important revelation of this research is that antibiotic resistance can occur even when antibiotics are not used.  

For Crohn's Disease patients, this is important news.  Ensuring a healthy microbiome is an essential approach to ensuring that a dysbiosis in the microbiome -- a hallmark of a Crohn's Disease inflammation flare -- does not occur.  Knowing that many other medications, in addition to antibiotics, can adversely affect the microbiome is critically important. 

Source:  Maier, Lisa, et al., "Extensive Impact of Non-Antibiotic Drugs on Human Gut Bacteria," Nature 555, 623-628 (19 March 2018).

Today, May 19, patients, advocates, friends, families, and health care specialists across the globe are raising awareness of Inflammatory Bowel Disease (IBD) during official World IBD Day.  Join them by getting involved or making a donation to support research, patient support, and advocacy efforts.  Great ways to get involved:

1.  Fasting: Some MRIs require you to fast (stop eating and drinking) the night before.  We recommend eating a healthy, filling dinner the night before and drinking plenty of water.  It helps if your MRI is scheduled first thing in the morning and luckily most centers give priority to kids for these early time slots so you won't be hungry too long.  Its also helpful to ask your family not to eat in front of you while you are fasting!

2. Leave Your Metal At Home:  MRIs have big magnets that will attract certain metal objects.  To be safe, remove all the metal from your body and leave it at home.  This includes jewelry, watches, and any removable dental appliances.  If your parents are coming into the MRI with you, they need to do the same.  Mom won't be happy about leaving her engagement ring in a hospital locker, so its best everything precious stay at home. Once at the MRI offices you and your parents will also be asked lots of questions about your medical history and any possible metal inside your body (orthodonture, orthopedic pins, staples, hearing aids, pacemakers, etc.)  As a final check you may also be screened by a metal detector to ensure nothing has been missed.

3.  Funny Pajamas:  Once you get to the MRI offices a nurse or assistant will probably ask you to put on some funny pajamas and socks.  If the offices are cold you may also want to ask for a blanket.  

4.  Drinking the Mix: To prepare for the MRI you may be asked to drink a mix of Miralax and Gatorade.  It doesn't taste great, but its not that bad either.  Its kind of hard to drink it all in the short time they give you and it may make you feel yucky.  It was easier to get down if we timed a few sips every minute.  

5. Lying Down on the Table: Usually, your mom and dad can stay in the room with you, so even if you can't seem them while you're lying down, you can still talk to them and know they are close by.  The nurse and/or technician will help you get on the table and show you the best position to lie in.  They may also put straps on your legs or waist to help you lie still.  After you are in the right position the nurse or technician will leave the room you're in and watch you from a special room with a window so they can see you. They will also be able to talk to you through a speaker  telling you when its ok to move and when its important to stay still. 

6. Plugging Your Ears:  The most surprising thing about an MRI is how LOUD it is.  It doesn't hurt at all, but it does make a whirring, chop chop chop sound a lot like a helicopter and sometimes like a fire alarm.  The noises can be so loud that the nurse will likely give you either earplugs or headphones.  The only problem with these is that it makes it hard to hear what other people are saying, but you get used to it. 

7: Getting the IV: During the MRI you may get a contrasting dye injected through your veins.  The dye helps the doctor see everything inside more clearly.  To prepare for this, the nurse may insert the tube in your arm ahead of time while you are waiting.  The nurse might rub a numbing cream on your arm so the needle prick doesn't hurt, but even if s/he doesn't it only pricks for a second and then she takes the needle out.  A little tube stays in your arm but it gets taped down and doesn't hurt.   In some people, the injection of the dye makes them feel sick to their stomach.  The feeling is intense and awful, but it usually passes quickly -- within 2-3 minutes.  The nurse gave me a plastic bowl in case I needed to throw up, but I ended up not needing it.

8.  Settling In:  The MRI can take a really long time.  Ours usually lasted 45-60 minutes.  I even fell asleep once! Its important to stay still when the machine is taking pictures so that you don't have to do them again. But if you do have to take some pictures again, its no big deal, it just takes a little longer.

9. When Its Over: Congratulations! When its over you will be relieved and also probably a little surprised that it wasn't as big a deal as you thought it would be.  You might even get a prize at the end for your bravery.  We got a stuffed animal and we got to keep our funny socks.  Now we wear the socks as a weird memento of our not-such-a-big-deal-MRIs. 

When I look at pictures of our son at the beach  last summer it is startling.  How could I look at those protruding ribs and thin limbs and not realize our son had Crohn's Disease?  Unfortunately, at the time I didn't even know what Crohn's Disease was.   Although I was always vaguely worried that Ben didn't eat enough or get enough sun, when I saw him without his shirt at the beach I was taken aback.   But somehow, I managed to talk myself out of my concerns, remembering old photos of his Dad -- who was also very thin as a boy but filled out as a teenager.  The paleness was easily explained in my mind too.  Ben didn't  play outside much -- like many boys his age he mostly preferred computer games.   

In addition to not knowing about Crohn's Disease, what we also didn't yet know that Ben was having severe diarrhea.  He was shy about telling us and didn't clue us in until the start of the school year.  We figured he was nervous about starting school and chalked up his symptoms to irritable bowel syndrome (IBS), an anxiety-driven condition that is pretty common in our family.  We tried not to pressure him to eat too much and let him pick many of our menus but when dinner after dinner was merely picked at, mealtimes became tense.  We wondered if he was having some trouble at school he wasn't telling us about or whether he might have an anxiety disorder.  We knew SOMETHING was wrong, but we didn't know what.  

At the same time, our daughter Isabelle was also complaining of stomach pains almost every morning.  She was admittedly excited and nervous about the start of school, so I attributed the complaints to nerves and didn't give it much thought at all.  Occasionally I would give her a TUMS, even if I didn't believe she had a "real" stomachache  I figured they were a good source of calcium.  She also intermittently complained about sores in her mouth.  In my experience, too much sugar, nuts, or citrus will give me mouth sores, so I assumed it was the same for her and tried to cut back on the sugary drinks she loved so much (e.g. chocolate milk at lunch, fruit juice box for snacks).  When the sores got particularly bad so that it hurt to eat, I took Isabelle to a walk-in clinic where the nurse practitioner diagnosed "hoof and mouth disease."  

If I knew then what I know now, its obvious none of this was normal and both kids were in early stages of Crohn's Disease.  They say hindsight is 20/20, so with my 20/20 hindsight I'll share the symptoms that our kids had that we ultimately learned are signs of Crohn's Disease:

• Frequent diarrhea and/or constipation
• Rectal bleeding
• Abdominal cramps and pain
• Loss of appetite
• Weight loss
• Weakness in the limbs and joints
• Fatigue
• Anemia
• Mouth sores/ulcerations in the digestive tract
• Skin rashes

Although every person is different, if any of these symptoms persist in your child, ask your pediatrician about testing for IBD.   When you know something is wrong, trust your instincts and ask specific questions about what could be causing your child's symptoms.  In most cases it will be a passing virus or food sensitivity but if its more, the sooner you get the right treatment the better.  

See also At 12, he had stopped growing. The reason was a surprise, Washington Post, Feb. 6, 2017.

To read more about the signs and symptoms of the disease we recommend the Crohn's and Colitis Foundation of America website, ccfa.org.