Building Body Composition and Maintaining Weight While Battling IBD

For many of us, when we’re initially diagnosed with IBD or when we flare, we experience weight fluctuations. The number on the scale may plummet during times when eating anything hurts or seems to make symptoms worse. The number on the scale may skyrocket when we’re on prednisone and not only retaining fluid, but also wanting to eat everything in sight.

Andrew Jagim, PhD, CSCS*D, CISSN was diagnosed with ulcerative colitis in 2014 after being infected with an intestinal parasite (Giardia). He managed to remain in remission for a few years until things went downhill quickly at the end of 2016. He dropped 50 pounds over the course of 3-4 months, was going to the bathroom 15-plus times a day, was running constant fevers, severely fatigued, anemic, and had little appetite. In the spring of 2017, after two weeks on TPN and several days in the hospital, he decided that a sub-total colectomy was his best option at the time. Since then, Andrew’s battle has been a rollercoaster of ups and downs, resulting in 12 colorectal surgeries.

Sports and fitness have always been a huge part of Andrew’s life—so much so, that he made a career out of it. He has a doctorate in exercise physiology, is a certified strength & conditioning specialist and a certified sports nutritionist, so he has an extensive background when it comes to understanding the important roles of exercise and nutrition for health and performance.

“Throughout my life, a large part of my identity has always been tied to my physical appearance. I’ve always been known as someone who is athletic, big, and strong with a high state of fitness. I struggled immensely during my flares and surgery recoveries when I couldn’t work out, when I looked sick or couldn’t stop losing weight. It was like I was losing a sense of who I was and who I identified with. When I looked it the mirror, it pained me to see my hard-earned muscle just “falling off” when I was too sick or weak to workout. However, I have always been determined to rebuild my body and regain what I lost.”

This week on Lights, Camera, Crohn’s—a look at the impact disease flares and surgeries can have on body composition, and how you can try and counteract the changes through diet and exercise.

A cornerstone of the disease itself is a high state of inflammation – most of which is centralized to the gut; however, this can also have systemic effects thereby resulting in widespread joint pain, fatigue and even a state of anabolic resistance within muscle tissue. Essentially, this makes it challenging to maintain or increase muscle mass during a period of high disease activity. This can be coupled with a reduction in appetite which can exacerbate body weight loss and muscle loss.

Surgeries can range from minimally invasive procedures to treat a fistula to much larger and complex operations such as removal of sections of the bowel and placement of a stoma for an ostomy. Depending on the magnitude of the surgery, patients often must modify diet and physical activity based on the recommendations of the surgeon.

These modifications will likely lead to decrements in body weight, muscle, strength, and endurance in the short-term; especially individuals who may have been highly active prior to the surgery. However, in patients who may be extremely ill at the time of surgery, the procedure may help them regain lost weight and strength as their body may finally be able to heal and recover from the inflammatory cascade brought on by IBD.

The Case Study Andrew Conducted

A year and a half after Andrew’s colectomy, he decided to schedule the second step for the J-pouch procedure. However, prior to, he decided to take advantage of this unique opportunity and conduct a case study on himself to document the changes in body composition and performance throughout the recovery process. He was curious how a surgery like that would impact someone with his fitness state as most of the literature focused on smaller or more sedentary individuals. Leading up to surgery, he had been able to resume his regular fitness routine and got his weight close to where it had been for most of his adult life.

“As seen in the figure below from my published case study, there were significant declines in body weight (-10.5%), lean body mass (-9.9%) and endurance (-40.3%) 4-weeks post-surgery. At 16 weeks postoperatively, most parameters were near their baseline levels (within 1–7%), with the exception of my peak endurance, which was still 20.4% below baseline. Thankfully, I was able to leverage my educational background and expertise in exercise physiology and nutrition to use targeted exercise and nutritional strategies to retrain my body and build my physique back up,” explained Andrew.

The balancing act of trial and error

As many IBD patients know, there are a lot of nuances, misconceptions, and unknowns regarding how diet impacts disease. For Andrew, it has been a lot trial and error to find foods that worked for him and helped him achieve his goals.

“Early in the recovery stage, just getting my appetite back and trying to eat more while not interfering with any post-operative dietary recommendations was always my goal. For me, this meant trying to eat about 2,500 – 2,750 calories and 150-170 grams of protein per day. In my opinion, these are the two most important dietary goals when it comes to regaining any weight (especially muscle mass) following surgery or during a flare. It will also help support the tissue and incision recovery following surgery”

Regarding exercise, strength training, is the most effective form of exercise to regain lean body mass following surgery. However, most colorectal surgeons (for good reasons) impose a lifting restriction of no more than ~10-15 lbs. for about 6 weeks following surgery to allow the incisions to heal and avoid the risk of hernia.

“For my larger surgeries, this was easy to abide by as I was in so much pain and was so fatigued that it was a struggle to just get dressed and ready for the day, so there was no temptation to get back in the weight room any time soon. But for the smaller surgeries, as I got closer to the 6-week mark, I was anxious to get back to my old routine. I took a very conservative approach and used a lot of alternative training techniques (i.e. blood flow restriction training, isometrics, resistance bands, etc.) to elicit an adequate training stimulus while not having to lift heavy weights and to avoid injury,” said Andrew.

Andrew’s main piece of advice about life with IBD? “Be prepared for a rollercoaster of changes to both your body composition and physical abilities throughout battles with IBD – especially during a flare or following surgery. Unfortunately this also will likely take a toll on your mental health as well, or at least it certainly did for me. However, just know that you can always get it back in time and more often than not, come back even stronger. Be patient and give your body rest when needed but otherwise keep grinding.”

Everyone has their own battles they are fighting

“I think my experience with IBD has taught me that everyone has their own battles they are fighting – even if they don’t show it. Additionally, it is also a reminder that not all disabilities are visible as a lot of people are probably unaware that I live with a permanent ostomy. I have chosen to keep a lot of my health struggles private and I think a lot of people will be surprised when they hear what I’ve endured over the past five years as I have still managed to have a successful career and not miss much work – despite all the surgeries and time spent feeling very ill.”

Andrew’s IBD journey also shifted his research focus a bit and challenged him to apply my knowledge of how to increase performance, strength and muscle mass in athletes towards a more clinical application.

“A lot of the strategies that work well with athletes can be modified and used in clinical settings as several of the benefits (i.e. increased muscle, strength, endurance, energy, etc.) may also help improve quality of life in patients will a chronic illness, those who are critically ill, or those recovering from surgery. It’s just a matter of making the appropriate modifications and fitting them to the current need,” said Andrew.

Here’s how you can connect with Andrew:

  • Facebook: Andrew Jagim
  • Twitter: @Ajagim
  • Instagram: Sports Science/Performance Nutrition Focused: @andrewjagim
  • Instagram: IBD/Ostomy Focused: @the_chronic_comeback

The future of biologics and the changes coming down the pipe

This article was sponsored by SmartTab. All opinions and thoughts are my own.

The future of IBD care and treatment is constantly evolving and there’s a lot of hope on the horizon for the patient community. Think back to the moment your physician discussed starting a biologic for the first time and how daunting it was to imagine giving yourself an injection or getting an infusion for the rest of your life. It’s a heavy burden to bear for many reasons.

This is where SmartTab comes in. SmartTab is a digital medicine company focused on drug delivery and improving patient care, comfort, and compliance. Their main application, the InjectTab, would give people the option of using the current syringe or autoinjector used to give biologic medication or instead have a person swallow a capsule that would deliver the active ingredients to either the stomach or the small intestine. This initiative is making waves in a big way in both the patient, pharmaceutical, and technology industries. SmartTab was recently named a Tech Crunch Disrupt 2020 Top Pick.

This image has an empty alt attribute; its file name is picture1.png

As someone who has been giving myself injections for over 12 years, this is music to my ears. My next question was what this means for those on infusions.

Robert Niichel, Founder and CEO of SmartTab, says, “We will start with the biologics deployed through a syringe and needle and then move to biologic infusions. Imagine if you take that infusion dose and instead take a smaller dose of the same medication as an ingestible capsule once a day. You now have reduced the amount of drug to a daily amount, side effects would go down because you’re not having to process this entire bolus and keep in mind that some of these drugs, no matter what it is, when you have an infusion, whether it’s to treat Crohn’s or receive chemotherapy, your body has to process that out through the liver or the kidneys. It’s stressful on the metabolism and the organs. Our goal, is that one day, regardless of whether it’s an infusion or an injectable, that you’ll take those drugs via an InjectTab capsule.”

This image has an empty alt attribute; its file name is profile1.jpg

Keeping patients in mind every step of the way

SmartTab is determined to limit the anxiety associated with managing diseases like Crohn’s and ulcerative colitis. The diagnosis and living with a chronic illness can be challenging to cope with, no matter how many years you’ve had it. It’s exciting to think what the future will hold for the IBD family.

“If physicians could go to people and say, we are going to start you on a biologic, you will take one capsule, every week, that’s a lot less of a burden than finding out you need to give yourself injections or spend hours with an IV getting an infusion. Your compliance goes up, patient outcomes, go up. At the end of the day, we’re trying to figure things out so people can lead better and more comfortable lives,” said Robert.

Getting InjectTab FDA-approved

SmartTab has the technology of the capsule finalized and they are starting a pre-clinical animal study next month. The InjectTab will inject an active ingredient into the side of the stomach.

“We will then do blood draws to collect the different levels of the active ingredients. Once that is complete, we will move on to human clinical trials and then onto FDA clearance, meaning approval of a device. Once we have that clearance, then we can combine our InjectTab with other active ingredients. Then we would seek out strategic partners to combine a prescription drug with our InjectTab. We would then do human studies.”

A lot of the heavy lifting for the actual technology has been completed, now it’s all about the clinical studies. Robert says the good news is that they’re not working on getting a new drug approved, since existing biologics will be used with the InjectTab technology.

“We believe that five years from now, if you take a biologic, you will no longer need to be doing a self-injection, there will be more options than syringes or needles to get your medication. You could just take a capsule. Whether it’s once a day or once a week, it will be as easy as taking your vitamins and moving on with your day.”

The cost benefits of a capsule vs. an injector

Right now, autoinjectors are typically hundreds of dollars. The InjectTab will range from $10-$50 a capsule, so right away there’s a significant cost reduction per use.

Robert says SmartTab is really counting on the insurance companies to look at this and say they’ll reimburse for the technology to deploy the drug because now patients are compliant and have reduced office visits and disease progression that can lead to hospital stays and surgeries.

SmartTab is currently in talks with several pharmaceutical companies, because that is the path to commercialization and making InjectTab a game changing reality for patients. Initially, the capsule technology will be available in the United States and then Europe. InjectTab will be geared towards the adult population first.

Life with IBD can be a tough pill to swallow, but the future possibilities surrounding InjectTab may prove otherwise. As someone who has given myself injections for more than a dozen years, this type of technology blows my mind in the best way. When my GI walked into my hospital room in July 2008 while I was battling an abscess the size of a tennis ball in my small intestine and he told me I had two options—Humira or Remicade, I was devastated. I didn’t want to give myself injections and I didn’t want to sit with an IV in my arm and feel sickly. It was a lot to process then and is still not always easy now. Hats off to companies like SmartTab innovating and changing the landscape for the future of IBD and beyond. As a patient, it means the world to me to see the tireless work going on behind the scenes that will change the future for those living with Crohn’s disease, ulcerative colitis, and other conditions.

This image has an empty alt attribute; its file name is humira-loading-dose-day.jpg

Interested in learning more about IBD innovations? Check out the virtual IBD Innovate: Product Development for Crohn’s and Colitis conference November 17-18. Register here.

Click here to learn more about Tech Crunch’s Top Picks for 2020.

Check out my podcast interview about living life powerfully with Crohn’s disease and the future of IBD treatment.

Why Busy Boxes are one of my favorite IBD mom hacks

When you’re a parent keeping your kid(s) entertained and engaged throughout the day is a constant challenge, especially as most of us continue to hunker down at home. When you’re an IBD parent, throw extended bathroom breaks, overwhelming fatigue, and debilitating pain into the mix. Keeping up with your kids, while making sure they’re safe and not getting too much screen time can sometimes feel like an insurmountable task. Just as it’s imperative we are proactive at managing our IBD, it’s also extremely beneficial to be proactive as parents. This is where busy boxes come in.

I first heard of this concept when I was pregnant with my daughter Sophia. My son wasn’t even two when she was born. I had intentions of breastfeeding (and I did), but between nursing and pumping, that’s hard to do when you have a busy toddler running around the house, while managing the day-to-day of life with a chronic illness.

What’s so great about busy boxes is that you can be creative, tailor them to your child’s age and interests, and do so without breaking the bank. As a mom of a 3.5-year-old and a 22-month-old, with winter approaching in the Midwest in the middle of a pandemic, I’m starting to update my busy boxes for the long months ahead. I started this past weekend. I went to the Dollar Store and got this haul for a mere $14.

All this for only $14!

Whether you’re at Target, Hobby Lobby, or on Amazon, you can pick up little activities as you go to continue to keep the content within the busy boxes fresh.

Creating your busy boxes

Sensory busy box: Hide farm animals, dinosaurs, or cars in rice, pasta, or kinetic sand.

Themed activities. My daughter loves Frozen, so I included stickers, puzzles, books, and trinkets. My son loves dinosaurs and sea creatures so I will keep that focus in mind as I update his busy boxes.

Letters/Words and Numbers/Counting: Include items that help your child learn the alphabet, recognize numbers, spell, learn opposites, matching and rhyming.

Shapes: Puzzles, felt designs of food and people, and paint-by-sticker books, you get the picture.

Storing your busy boxes

It’s best to keep busy boxes out of reach from your children so it’s something that’s not always accessible. That way, it feels like a fresh new activity. We keep our busy boxes stowed away in the kid’s bedroom closets (where they can’t reach them). As an IBD mom, I recommend keeping a box nearby the bathroom so if needed, your child can sit at your feet and be entertained with little to no effort on your part. Busy boxes also come in handy when you’re trying to cook dinner or having to be on a Zoom call for work. I knew it was time for me to update Reid’s busy boxes this week when I looked over during a Zoom call and he was jumping up and down on a bag of opened pretzels. Fun times! 🙂

Helpful busy box resources

Still looking for some inspiration? Pinterest is a great resource to check out ideas and to come up with activities for your little ones.

Here are some Instagram handles that provide helpful activities and guidance about educating and entertaining your child at home (no affiliations, just giving them a shout out) in hopes of helping you:

@busytoddler

@countingwithkids

@schoolathomeandbeyond

@simplybessy

@playdough2plato

@bestideasforkids

@happytoddlerplaytime

@dayswithgrey

@modernpreschool

@growingupyang

As we gear up for the winter months and this pandemic drags on, I hope you find this useful as an additional tool in your chronic illness parenting arsenal. I know it does my heart good to know I have something fun and engaging to share with my kids, especially on the days when my Crohn’s interferes with my plans or expectations for the day.

Four Things People with IBD Wish Healthy People Knew

If you live with chronic illness, you may often find you sugarcoat your struggles. For 26-year-old Marissa Spratley of Maryland, this is nothing new. She battles Crohn’s disease, psoriatic arthritis, ankylosing spondylitis, and interstitial cystitis. She manages her conditions with Stelara and sulfasalazine. This week she openly shares what she wishes healthy people knew about life with IBD. I’ll let her take it away.

In the chronic illness community we all know how incredibly difficult it is to have Inflammatory Bowel Disease (IBD), or any other chronic illness. We know what it feels like to get hit with a wave of fatigue so hard you have to lay down immediately. We know what it feels like when our gut is on fire from something we ate. We know what it feels like to have nausea so badly all we can do is curl up in a ball on the bathroom floor and cry. We know these things, yet when we communicate with a healthy able-bodied person, we downplay our struggles and pain. 

Why are we afraid to be honest about how much pain we’re in on a daily basis? Is it because we don’t want to make others feel bad for us? Is it because we don’t want to show weakness? Or maybe it’s because we feel like by explaining how much we suffer on a regular basis, people might know the truth about us. That even though we are incredibly resilient, we live a hard life. We struggle and we cry and we ache and there are days where we wish IBD didn’t exist at all.

The truth is, hell yeah we are strong. But we are also weak, and we are tired. We are exhausted from always having to be strong in the face of pain. We are sick of having to downplay our symptoms and our suffering to make the healthy, able-bodied people around us feel less uncomfortable. We are tired of saying, “I’m good,” when someone asks how we’re doing and we really want to say “I feel like death.” 

So, in the spirit of honesty and opening up to the very ableist world around us about what it’s like to live with IBD, here are four things people with IBD wish healthy people knew.

  1. There are days when it hurts just to breathe. 

No, I am not being overdramatic. Yes, IBD affects more than just your gut. There are days when we wake up and everything about us aches. The way I describe it, is that I feel like I just got hit by a bus. My whole body aches deep in my bones, and it can take me an hour just to get out of bed and stand up straight. Those days are some of the hardest because on the outside we look perfectly normal. Please remember that not all illnesses are visible to the eye.

  1. Good intent doesn’t always mean good impact.

We know you’re just trying to help when you make suggestions about things we could do to try to feel better. But the truth is, we know our bodies better than anyone else, and trust us when we say — if there was something we could do to make us feel better, we’d do it. When you comment about things we should try (like juicing or yoga or going paleo), it makes us feel like you think we aren’t doing enough to feel better. Our healing and health are our business, and while we know you care, if we want your help or advice, we’ll ask for it. We appreciate you understanding this.

  1. Having a chronic illness is really hard on our mental health.

IBD is hard, period. Folks with chronic illnesses not only have to struggle with our physical health, but IBD also has a huge impact on our mental health. Being chronically ill makes you question a lot about yourself — Am I a burden to those around me? Am I worthy if I can’t work? Does my chronic illness make me hard to love? It also makes you question a lot about your worth — Am I lesser than because I can’t work as long as healthy people? Will employers not want to hire me? Do I bring enough to a relationship? These are all real questions I’ve asked myself at one time or another, and I can guarantee they are things other chronically ill folks have thought about as well. The way that IBD can affect your mental health is one of the most challenging parts of being chronically ill, because it is not talked about. So, what can you do to help us with our mental health? You can remind us we are inherently worthy, no matter how “productive” we are. You can remind us that you love us for who we are in our hearts, and not what we can do with our bodies. That means more to us than we can even put into words.

  1. Ableism affects the chronically ill, too.

Many people with IBD and chronic illnesses struggle to claim themselves as disabled, and this is something I could go on a tangent about. But here’s what you need to know: IBD affects our bodies in ways that make us less able, or disabled. The truth is, in the able-bodied centric society we live in, we believe it is offensive to call someone disabled because it means they can’t do something. However, to the actual disabled folks in our community, it is not offensive at all. We own the fact that we can’t use non-handicapped restroom stalls or walk up stairs. We are not afraid to say that there are tasks we cannot do as chronically ill, disabled individuals. It is our ableist society who thinks the term disabled is offensive. It is the ableist mindset that believes by saying someone can’t do something, we are being hurtful. Because to the chronically ill and disabled community, we know that our disabilities do not affect our worth. We know that our health does not affect our worth. But now we need you to know that, too.

To all my IBD and chronic illness folks: I see you, and I hear you. I hope that the next time you have a conversation with someone and you want to be real about how much it truly sucks sometimes, you can send them this article.

To the healthy, able-bodied folks reading this article, thank you for showing up and reading to the end. I hope you learned something new about how to better support your loved ones with IBD or chronic illness.

Connect with Marissa on Instagram: @mindbodycrohns

Putting the debate to rest: IBD fatigue isn’t your “normal” type of tired

I was putting away the dishes after dinner when I paused, exhaled, and said to my husband, “Whew. I just got a major wave of fatigue.” He said, “Yeah, I feel tired right now, too.” This isn’t the first time a healthy, able-bodied person has responded this way—and I know everyone with a chronic illness can relate. I kind of laughed and tried to explain why chronic illness fatigue wasn’t the same as feeling tired, but I was coming up short for words and having difficulty explaining the difference. My husband, Bobby, genuinely wanted to know why I thought my fatigue was different than his and how I knew it was. I said I used to be healthy. I used to not have a chronic illness. I know what tired felt like then and what fatigue feels like now.

Articulating pain with IBD and fatigue can be so challenging—even though it’s something that is so much a part of our day-to-day experience. Unless you live it and it’s your reality, it’s difficult to put the experience into words.

I called upon the IBD family on Twitter and Instagram to see how they describe their own personal fatigue. Here are some of the responses:

“Imagine your car being on empty and you put $5 worth of gas in the tank until you’re running on fumes. Then you put $5 worth of gas again, and you continue this process for months at a time…while sometimes running out of gas completely multiple times along the way.”

“Having to run a consistent marathon without stopping while carrying a toddler in the front and a backpack with a week’s worth of supplies on your back…in flats.”

“Mentally feeling like you have the energy to do simple tasks, but your body physically won’t let you. Knowing I need to walk 100 feet to get in my work building and having to give myself a pep talk to do it because I’m not sure I’ll make it without having to sit down.”

“You’re tired from being tired. You are just over everything and the day drags on and on. A nap doesn’t help because you “waste” your day, but the truth is you can’t even take a shower because the thought is way too much energy.”

“Like you’re walking with ankle and wrist weights on 24/7. There are days I feel like I’m walking through a fog so dense in my head I can touch it.”

“When I think of chronic fatigue for me it means faking being well. When getting out of bed or getting a shower is an accomplishment or needing to rest after taking a shower. No matter how much sleep you get you still wake up tired. Chronic illness fatigue is physical, mental, and emotional exhaustion.”

“Trying to motivate yourself when you’re fatigued and having brain fog is how I imagine swimming in syrup or molasses would be.”

“It’s the feeling of exhaustion, hopelessness, and loss. You’re beaten down from managing your condition and the various negative side effects that come with it on top of trying to function in whatever role you’re trying to play on a daily basis (for me: wife, mother, employee, and friend). It’s trying to make the most out of life but knowing you’re limited. It’s mourning the person you once were and want to be at that time. It’s physically, mentally, and emotionally draining.”

“I explained the fatigue to my students that just thinking about lifting my legs to walk or the mechanics of moving my limbs is exhausting…let alone the act of doing it. Everything feels heavy.”

 “Down to the bone, exhaustion in my core, something that is impossible to push through.”

“I like it’s like first trimester fatigue! But, with no end in sight and nothing hopeful to show for the symptoms like a baby!”

“Like your body is made of bricks. Your mind knows you need to get up and do something—change over the laundry, send an email, but your mind cannot make your body move.”

“Living in a constant state of exhaustion. No amount of sleep or rest seems to shake it.”

“For me…I would describe chronic illness fatigue as KNOWING your car has no more fuel and having to get out and push it home yourself.”

“Heaviness in my body. Just surviving, not thriving. Frustrating because I want to do more things but can’t always.”

“Being tired as soon as you wake up, until you go to bed. Never fully feeling rested. Planning naps throughout a day. Heavy eyes. Mood swing when beyond exhausted.”

“Like constantly living under 10x gravity.”

“Like someone pulled the plug out.”

“Like moving through the mud. It can also creep up on you when you least expect it, sort of like this year’s global pandemic—all encompassing and has no sympathy.”

“Like I’m wearing 100 pounds worth of sandbags that don’t go away even when I get lots of sleep.”

“Waking up and still being tired. No amount of coffee can fix this tired.”

Stop the comparison game

After reading these descriptions, my hope is that the next time you try and compare your fatigue or tiredness to someone with a chronic illness you pause and be selective of your words. Of course, everyone is entitled to be and feel tired, but it’s not an even playing field energy-wise when you’re a healthy, able-bodied person. Coffee, naps, and sleeping in help most of the population feel energized and re-charged, but fatigue with chronic illness is often untouchable. A full night’s rest can still leave you feeling exhausted. A coffee may have no impact. A nap may cause the fatigue to be even more pronounced. As an IBD mom, it can be frustrating to hear someone without a chronic illness try and diminish my personal struggles by equating them to theirs when there is truly no comparison.

Halloween Happenings and IBD: Advice from GI’s and parents of pediatrics

Halloween is extra scary this year for all the wrong reasons. It’s especially challenging for children with IBD who are immunocompromised. This week on Lights, Camera, Crohn’s I share input and advice from several gastroenterologists about everything from trick-or-treating to flu season, along with the game plan four IBD families have in place for the holiday. Much like anything with this pandemic, we’re trying to do the best we can to live, while also staying safe.

As an IBD mom myself, I’m still conflicted about how best to celebrate Halloween with my kids this year. We have their costumes, and the house is decorated festively, but I’m extremely hesitant to allow my 3.5-year-old son to get candy from strangers in the middle of a pandemic. Our game plan is to hang out with my sister-in-law’s family as we do every year. I’ve been inspired by how fellow IBD families are creatively adapting and making adjustments to celebrate. I think you will be, too.

Nicole’s daughter Addy is 15 and has Crohn’s disease. She’s on Humira. Nicole said her family already had a little “pow wow” to discuss Halloween and how it was going to be this year. They’ve decided to celebrate over the span of two days by doing the following:

  • Making Halloween Gingerbread houses
  • Decorating Halloween Cookies
  • Having a glow in the dark scavenger hunt (The lights in the house will be out, the kids will have glow sticks/flashlights and they will have to use clues to find their bags of Halloween décor. With the bags of décor, each child will create a mini haunted house in their bedroom and go “trick or treating” to the different bedrooms and experience their siblings’ haunted house.
  • On Halloween night Nicole is going to make a Halloween-themed dinner
  • The family will watch Blair Witch Project

Nicole says being immunocompromised through COVID has been incredibly challenging for her daughter. She says they are trying to balance everything so that Addy doesn’t fully resent her disease.

“She sees that her friends are hanging out together, not social distancing, and not getting sick. We have had many moments filled with tears and frustration and we are doing the best we can to try and offer social interactions in the safest ways. But, she is a teen…and the efforts are hardly enough. Halloween this year is something my kids are all excited about, but it’s the day-to-day stuff that is most challenging through the pandemic.”

Ebony’s 14-year-old son, Jamar, is on Remicade infusions to manage his Crohn’s disease. Jamar was diagnosed with IBD when he was nine. He’s now a freshman in high school and attending school daily in-person for half a day with the hopes of making the basketball team.

“Even though Jamar is attending school, we decided as a family that we are not going to do anything for Halloween this year. We also plan to celebrate the holidays at home, to keep on the safe side. Since he was diagnosed with IBD and expressed sadness that he didn’t understand why he had to have this illness, I’ve explained to him that we’ll get through this together and that I’ll always support him—and that hasn’t changed through this pandemic,” said Ebony.

Paulina’s nine-year-old son, Grayson, also has Crohn’s. He’s on Pentasa, Entocort, and Omeprazole to manage it. She says her family plans to dress up in costumes as usual. Grayson is going to be Bowser from Super Mario Brothers. They have tickets for a drive through Halloween event at the community center by their home in California. Paulina says even though they have to stay in the car this year, Grayson and his sister are still excited to see all the decorations and participate in the scavenger hunt.

“We also plan on faux trick or treating, where we still go out and walk around our neighborhood and enjoy spotting cool decorations, BUT I will bring a bag of goodies and little prizes. For every few houses we walk by, they’ll get a surprise goodie put into their bag. Grayson will be able to go through his “loot” once we’re back home. I’m sure we’ll watch Nightmare Before Christmas (it’s a family favorite). Halloween falls on a Saturday and on a full moon…how could we possibly miss the nightly walk?”

Paulina says Grayson often feels frustrated when the topic of “being immunocompromised” comes up, but that he understands they are being overly cautious for his own health and that of others.

Cindy’s 10-year-old daughter, Jean, has Crohn’s disease and is on weekly Humira injections. She says Jean is in that interesting phase of childhood where she still kind of wants to go trick-or-treating, but also feels like she’s outgrowing it or too cool for that. This year, Jean is going to attend a small outdoor get-together on Halloween night with four classmates. It’s important to note—Jean has been attending 5th grade—in-person, five days a week since August.

“The kids will make s’mores and pizza and watch a spooky kid movie on an outdoor screen. Because she and her friends are in the same classroom “pod” and she spends more waking hours with these classmates than she does in our own home, we are accepting of her celebrating with them.”

Cindy says Jean’s friends and their families have been extremely accommodating to her immunocompromised status throughout the pandemic.

“When she has visited their homes or on limited occasions shared a carpool, these families have been careful to pursue a combination of exclusive outdoor time, mask-wearing, windows down on car rides, pre-packaged or restaurant carry-out snacks and meals, and having freshly cleaned bathrooms dedicated for guests’ use. Other parents proactively talk through risk mitigation and I couldn’t appreciate them more for their thoughtfulness. Immunocompromised or not, we all share similar concerns during COVID.”

Cindy went on to say she thinks Jean will trick-or-treat with her five-year-old brother at a few of their next door neighbors’ houses. They live in Indianapolis and trick-or-treating is “not recommended” by the county health department there, but she expects many of her neighbors will still be handing out candy.

“I also intend to hand out candy from our driveway, so long as trick or treaters or their parents are wearing face masks. This follows our family’s general approach on life during COVID: we are more concerned about “shared air” than we are about surfaces. We believe (and science indicates) surface infection can be largely addressed through handwashing. Because trick or treating can occur in outdoor spaces, we feel somewhat comfortable with that – balanced with the fact that while we are extremely concerned about COVID and have taken all precautions since March – we strive for an ounce of normalcy. There are enough parts of Jean’s life that are not typical due to living with Crohn’s Disease – whenever we can control any part of her life feeling “normal” we make every effort to do so. This was the case before COVID and will remain so afterward.”

Cindy says she reminds her daughter they are doing everything they can to protect her health, while also doing their best to ensure Jean can pursue all the parts of her life that bring her joy. It’s not an easy tightrope to walk, and as an adult with IBD, my hat truly goes off to parents trying to navigate these unforeseen times for their children.

What Gastroenterologists are recommending for Halloween and beyond

Dr Miguel Regueiro, M.D., Chair, Department of Gastroenterology, Hepatology, and Nutrition, at the Cleveland Clinic says he thinks it’s important for people to “live” and be with family and friends. He has a few tips and tricks (or treats!). (His joke, I can’t take credit!)

“For outside events or walking the neighborhood, this is probably the safest as we are learning that open air events are the least likely for transmission of COVID. At the same time, I would still practice wearing masks, social distancing, and practicing good handwashing. Avoid personal contact, shaking hands, hugging, etc.”

For those distributing candy, Dr. Regueiro says it would be prudent to wear gloves (nitrile gloves or similar) to avoid directly touching the candy. Out of abundance of caution, he said it would be reasonable to also wear gloves to unwrap the candy.

“Regarding trick or treating in malls or confined spaces, this would be less optimal than open air. Masks, social distancing, and hand hygiene is a must. Parties or gatherings in houses should follow the guidance of local health advice. Some parts of the country may have a much lower rate of COVID. Overall, though, I would avoid close gatherings in enclosed spaces, which means avoiding these parties, especially if immunocompromised.”

Dr. Regueiro wants to mention that the IBD Secure Registry is finding that IBD patients on immunosuppressive agents/biologics are NOT at increased risk of contracting COVID. He says while this news can be comforting, it may also be that those with IBD on these types of medications have been extra cautious.

“Everyone should get the flu shot. Getting influenza may mimic symptoms of COVID, and influenza is also a very serious virus. We think getting influenza and COVID could be even more dangerous. Getting plenty of sleep, staying well hydrated, eating healthy, and exercising are also important for the immune system and health. Don’t let yourself get run down.”

Dr. Anil Balani, M.D., Director, Inflammatory Bowel Disease Program for Capital Health Center for Digestive Health in New Jersey does not recommend indoor Halloween parties either, even if kids and parents are wearing masks (whether it’s part of the costume or a regular mask).

“With indoor settings it is hard to control the ventilation settings which could potentially increase the risk of airborne transmission, and furthermore many kids may find it difficult to breath indoors with a mask on.”

Dr. Balani says trick or treating, if it’s limited to outside, is probably ok. Although kids should wear masks when doing so.

“Children can trick or treat with their parents or siblings instead of a group of large friends, unless they are with a small group of friends that are in their “pods,” or groups of friends whose parents have been very careful with all COVID related precautions the entire time. Parents of immune compromised kids can also pick up the treats for the kids.”

Along with maintaining proper handwashing and social distancing precautions, Dr. Balani advises everyone to get the flu shot, unless there are medical contradictions. He recommends taking a healthy dose of vitamins including Vitamin C and zinc and continue to stay on top of all your IBD medical care to keep your disease managed and under control the best you can.

“The SECURE-IBD registry has shown us that people who are in the midst of an IBD flare are at high risk for complications from COVID should they contract the virus. On the other hand, if one is in remission, they are likely to have a better outcome from the virus, regardless of which IBD medical therapy they are on.”

When it comes to celebrating Halloween with his own family Dr. Balani and his wife have a few tricks up their sleeves. Instead of typical door to door trick or treating, they plan to set up an outdoor movie night with Halloween-themed movies, have an outdoor candy/treat hung similar to an Easter egg hunt with family and/or a close knit group of friends, host an outdoor pumpkin carving party, and have a backyard costume/glow dance party.

And don’t feel like you need to throw out your kids’ Halloween candy! Studies suggest that the SARS-COV2 virus may not be infectious on surfaces for too long. If there are doubts or concerns, Dr. Balani recommends leaving the candy out for a few days to allow any virus particles to die. Parents can also open the wrappers for their kids.

Dr. Maria Oliva-Hemker, M.D., Director, Division of Pediatric Gastroenterology, Hepatology, and Nutrition at Johns Hopkins suggests for families to look for other creative ways of celebrating Halloween this year, regardless of whether a child has IBD or not.

She recommends:

  • Virtual costume parties
  • Halloween movie or craft night
  • Making special Halloween-themed treats at home
  • Outdoor costume parades where physical distancing is possible
  • Checking to see if the local zoo or other outdoor venues in the area are sponsoring a safe, community event, following social distance guidelines.

“Those who hand out treats on Halloween will hopefully wear face coverings and model safe behaviors. If you are trick or treating, consider going to a smaller number of homes compared to past years,” said Dr. Oliva-Hemker.

Prior to making Halloween plans, Dr. Oliva-Hemker says families should be aware of the levels of COVID cases in their communities, as well as where their family members are coming from.

“For example, if they are coming in, or coming from a hot zone, they may want to consider holding a virtual event or be absolutely sure that they follow known guidelines for safety (masks, handwashing, physical distancing).”

She also says she can’t stress enough that this virus can be controlled in our society—other countries have been able to get a handle on things by people following public health guidelines.

“The virus does not know your political, religious or other affiliation—as a physician my hope is that our country pays more attention to what reputable scientists and public health experts are telling us. Taking care of this virus will also get the country back on track economically.”

Handling Halloween When You’re an Immunocompromised Parent

Mom (and dad!) guilt throughout this pandemic has reared its ugly head a few times especially if you live with a chronic illness and are immunocompromised. The last thing I want is for my kids to miss out on fun and experiences because of my health condition.

Dr. Harry Thomas, M.D., Austin Gastroenterology, says, “For parents with IBD, taking children trick-or-treating outdoors – while maintaining social distance, wearing face coverings, using hand sanitizer, and avoiding large gatherings – is, in my opinion, a reasonable option, provided they are not on steroids. However, I would recommend avoiding indoor gatherings, especially without masks, given the rising case numbers in many areas now.”

Along with receiving the flu shot, Dr. Thomas recommends IBD parents to talk with their IBD provider about the two pneumococcal (pneumonia) vaccines, Pneumovax and Prevnar 13.

Navigating the upcoming holiday season in November and December

Halloween is just the tip of the iceberg when it comes to the holiday season. There’s no doubt this will be an extremely hard time for us all.

“This is normally a time to celebrate with friends and family. But with the COVID pandemic, unfortunately things cannot be the same. This will be especially difficult for those of us living in the cooler climates where the tendency is to go indoors. For any potential indoor gatherings, it would be ideal to limit the number of people to allow safe social distancing. I would encourage families that are planning on staying together multiple days to consider getting tested for COVID before getting together,” said Dr. Balani. 

How Crohn’s Disease Inspired Ted Fleming to Create Partake Brewing

Ted Fleming of Calgary gave up alcohol more than a decade ago to keep his IBD symptoms and disease activity under control. He was diagnosed with Crohn’s disease in 2005, at age 25. Ted says he not only missed the taste of beer, but discovering new beers. Even more than that, he found he missed the social connection that comes with sharing a drink with a colleague after a hard day’s work, cracking a beer with the guys after hockey, and joining in to celebrate special occasions.

A friend suggested he try non-alcoholic beer. Ted says the problem is most tasted awful and there was almost nothing on the market in terms of variety. It was at that point Ted decided to launch Partake Brewing. His hope—to bring all things that make craft beer great to non-alcoholic beer drinkers including taste, variety, authenticity, creativity, and passion. Now 42, Ted, is a shining example of someone whose career path evolved because of and was inspired by his IBD.

I was intrigued by his patient journey and how he got to where he is today. Here’s his Lights, Camera, Crohn’s interview:

NH: How has your patient journey with Crohn’s disease the last 15-plus years helped you create a successful business?

TF: “The discipline around my own personal health has helped me as a business owner to set priorities and largely keep to those priorities. There are many distractions and potential paths to go down as an early stage business so planning and having the discipline to stick to the plan over the long-haul are critically important.”

NH: How do you manage your IBD (medication/lifestyle wise)?

TF: “Regular exercise, medication (Humira), dietary changes (limited red meat, no uncooked veggies, no alcohol), get enough sleep, and be social.”

NH: What advice do you have for those who are worried about finding a career path they’re passionate about while juggling their IBD?

TF: “I am fortunate to have had some long periods of remission, but early on I struggled and that impacted my journey to find a career that was rewarding in ways important to me. Being willing to try new things is a good way to test interests, but with IBD, we don’t always feel up to it… so knowing when to say no and being ok with that is a necessary skill that takes practice.”

NH: How do you navigate the stress associated with running a business and managing your Crohn’s?

TF: “Managing stress has been an important part of my journey and I find that when I do start to have trouble with my Crohn’s, stress is usually one of the triggers. We each manage stress differently so finding what works best for you is important and integrating regular stress relief and stress avoidance into your daily routine can pay huge dividends. Besides avoiding alcohol, I have adopted better sleeping habits, exercise regularly, plan to socialize directly with people, and largely refrain from using social media.”

NH: What type of feedback have you received from customers? Any IBD folks reach out and thank you for creating this?

TF: “We are so lucky to have some of the best fans in the world, our consumers are incredibly passionate about our beer and our mission. We get emails regularly from consumers from all walks of life who are grateful to have the opportunity to enjoy a great beer no matter what their reason for partaking. The IBD community has really rallied around us and I am incredibly grateful and humbled by their outpouring of support. It was this feedback, particularly in the early stages of the business, that helped us push through the inevitable challenges of running a startup and to this day gives us a powerful purpose.”

NH: What sets your non-alcoholic beer apart from the rest?

TF: “Partake Brewing’s beer is crafted with international award-winning recipes, is incredibly delicious, and is only 10-30 calories per can. Our beer is also brewed with four simple ingredients but is packed full of flavor. When I started Partake Brewing, I wanted to not only brew a great beer but I also wanted to bring a variety of great beers to the non-alcoholic market so anyone can Partake on their own terms.”

NH: How/where can people get their hands on Partake?

TF: “You can find Partake Brewing on shelves across Canada and the USA, but you can also have it delivered straight to your door from DrinkPartake.com. In Canada, you can find us at major retailers such as Safeway/Sobeys, Loblaws, Atlantic Superstore, Great Canadian Superstore, and the LCBO as well as many others. In the US, we are sold at Total Wine & More and select Whole Foods.”

Connect with Partake Brewing

Instagram: @partakebrewing

Facebook and Twitter: @DrinkPartake

Why IBD Forces You to Take Off the Rose-Colored Glasses and See Clearly

I remember the first time I put glasses on in fourth grade and no longer saw the world unclearly. I can still recall the first time I wore contacts sophomore year of high school and experienced how crisp life is supposed to look. Prior to glasses and corrective lenses, I thought my vision was how everyone else saw. I recently came across a discussion on Twitter by Jessica Caron (ChronicallyJess) about how you would describe your IBD journey at the beginning—in one word. One woman, Emily Morgan (@EmMorgan27) replied with the word blurry.

That response got me thinking. It’s spot on for so many reasons. Take yourself back in time to the first week you were diagnosed with Crohn’s or ulcerative colitis and the clarity you’ve gained and continue to gain with each year that passes.

When I was diagnosed with Crohn’s in July 2005 at age 21, I remember sitting almost stoically in my hospital bed because I was so overwhelmed by not only what the next day or week would bring, but the next hour. All my plans, all my goals, all my dreams that were once crystal clear became incredibly hazy. The thought of thinking beyond that moment almost made me feel dizzy with dread.

What does this new world of chronic illness look like?

What would be possible with IBD? Who am I now? How has my identity shifted? Where do I go from here? What will my friends think? What will future employers think? What’s it like to be on medication for the rest of my life? Will anyone ever love me? The list goes on. The vision that I had the first 21 years of my life was forever tainted.

But as the years rolled by, I came to realize the rose-colored glasses I wore prior to diagnosis didn’t give me that clear of a reality about not only my own life, but those around me. Prior to Crohn’s I just expected everything to go my way. Prior to Crohn’s I felt invincible. Prior to Crohn’s I didn’t think twice about my health and what a gift it was.

Now life is anything but blurry

Looking back over the past 15 years, my vision of life with Crohn’s is anything but blurry. As I grew older and more mature, this disease of mine made me see the world clearer than I had ever before. The darkest days have led me to the brightest, shining moments. Nothing is taken for granted. Nothing is expected, but rather overly appreciated. This disease forced me to see the strength inside myself and the resilience that I never knew existed. This disease has demanded a lot out of me and still does, but it’s enabled me to discover a newfound gratitude for life’s simplicities and provided me with superhero strength vision of who is genuinely in my life, and who is not.

It’s gotten to the point where I don’t even know if I would have been the same adult if I never got Crohn’s. My IBD is not my identity, it’s only a part of who I am. Now I credit not only my contacts, but my Crohn’s, for improving my vision.

“So, You Have an Ostomy”: The Complexity of Coping —Part 1

When you think of ostomy, what comes to mind? As someone whose had Crohn’s for more than 15 years, but never been an ostomate, it’s something that has loomed over my head since diagnosis. I’ve always wondered if I would ultimately end up with a bag and what that would mean for my life. I know I’m not alone in those worries and curiosities. Which is why I’m kicking off a 4-part series on Lights, Camera, Crohn’s— “So, You Have An Ostomy.” Over the course of these articles you will hear from more than 20 ostomates from around the world.

Today—we’ll focus on what it’s like to find out you need an ostomy, the complexity of coping, and adjusting to your new normal.

What it’s like to wake up from ostomy surgery

Blake Halpern, 39, of Texas, was diagnosed with ulcerative colitis in November 2004. By April 2005 he had a temporary ileostomy. After four weeks of being hospitalized on full bowel rest, it was determined he would need his colon removed. Blake says he was so worn out and emotionally drained, he felt like a shell of his former self. He was anxious to have the surgery and get his life back on track.

 “The ostomy is so shocking. It seems like something out of a Sci-Fi movie.  My small intestine poking through my abdomen emptying my waste into a bag?? That’s crazy. But it gave me some semblance of my life back. I was able to get out of the hospital, slowly start eating again and reclaiming my life.”

Alison Rothbaum, 41, of Ohio, was diagnosed with Crohn’s disease in 1994 at age 15. She says prior to her ostomy surgery, she went into a very dark mind space that she wasn’t prepared for.

“I woke without a pivotal organ. I woke with a new prosthetic device attached to me. I ached in my belly and in my heart. I needed to mourn the loss of the organ. It’s hard to describe unless you’ve experienced it. I refused to look at myself from the top to bottom in the bathroom mirror for a week. I didn’t want to see what the new body looked like, even though I had already begun to learn how to change my ostomy while lying in my bed.”

For Tina Aswani Omprakash, 36, of New York, needing an ostomy struck a major chord for not only her, but her family. She recalls how her dad hated his ostomy while he was alive and used to rip it off when he was in a coma in the hospital. Because of that, her mom had a significant amount of PTSD from his experiences and was against Tina receiving one. Her cultural society also told her that no one would marry her or accept her if she was an ostomate.

“I held off for as long as I could, but I started thinking that an ostomy wouldn’t be as bad as everyone was saying. I knew I needed to listen to my heart and to my doctors. My gut feeling (as flawed as my gut may be) was right. My ostomy had become my baby so to speak and I grieved for months if not years for the life it had given be back. Don’t let society sway your thinking. Seek counseling and ask all the questions you can to your surgeon and Wound, Ostomy, and Continence Nurse (WOCN) before the operation so you can feel a bit more at ease.”

Tina recommends connecting with fellow ostomate online over social media and through blogs. She says an ostomy doesn’t have to be a life sentence, but rather a life-saving force.

Adjusting to the new normal

Renee Welch, 34, of Toronto, Ontario was diagnosed with Crohn’s when she was nine years old. Getting an ostomy was a life or death decision for her. She knew the life she was currently living wasn’t what she was destined for and ultimately the choice was out of her hands.

“The hardest part of having an ostomy was recovery. It’s a long process that is not progressive. Mine took three months until I was able to feel like myself and even after that my energy was not the same until six months down the road. Recovery is something you can try to mentally prepare for, but you never know.”

Natasha Weinstein, 28, of Connecticut was diagnosed with Crohn’s at age 11. She can still remember feeling that tug on her skin and not knowing if the bag was going to randomly fall off. Eight years later, she’s still impressed with how strong the adhesive is! One of her main struggles was adjusting to her new self-image.

“No longer would I have a “flat” right side when I looked in the mirror, in fact I was always going to have this device protruding and as a college student and a young adult that’s a lot to adjust to.”

Payge Duerre, 21, of Iowa, was diagnosed with ulcerative colitis in 2003 at age 5. Her advice—not to think of your entire life as the first couple months after surgery.

“The first couple months can be shitty. More pain, more recovery, less muscle, new foods, new clothes. The entirety of ostomate life is not like that. My first three months post op were spent relearning life. But now I’m two years post op. I’ve already re-taught my body, but I’m always constantly learning new tips or tricks from other ostomates to make life easy.”

Advice for those who need an ostomy

Ashley Clark, 27, of British Columbia, was diagnosed with Crohn’s when she was 19. Her main piece of advice, “If you’re at a point where you are contemplating ostomy surgery, get it sooner rather than later. Waiting until getting my ostomy was a matter of life or death is one of my biggest regrets. It took me so much longer to recover because I let myself get so sick before I would agree to it. Looking back, I think, wow my life is so much better now, if only I had known it would be and agreed sooner.”

Tionna Forchion, 32, of New Jersey, was diagnosed with Crohn’s when she was 13 years old. She ended up getting an emergency colostomy after a bowel obstruction, so she wasn’t able to mentally prepare for the everything that came her way. Tionna says she was angry at first and cried for days, but as time passed so did her acceptance for how having a bag saved her life.

“My advice for anyone on the verge of getting a bag or needing one is that there is life after getting an ostomy. So many times, people say they don’t want a bag because they assume there will be so many things they can no longer do and that is so false. You can still travel, swim, go to college, have kids, get married and do everything a person without a bag can do.”

Gaylyn Henderson, 36, of Atlanta, Georgia, was diagnosed with Crohn’s at age 14 and has a permanent ileostomy. She says at times with chronic illness you can’t help but wonder if there is anyone out there who really understands what you’re going through, but that there is.

“You need to meet them, and you need to seek them out to know that what you are feeling is not unusual. The feelings you have are very real and it’s not out of the ordinary to be feeling that way. You are not crazy, your life is. There is an importance to building a fellowship of those that can relate to what you are going through. It is imperative to know you are not alone. You may not go through the exact same circumstances, you may not have the same diagnosis, but chances are you have similar experiences and can relate more than you realize. You need to know that what you are going through you will get through.”

Stay tuned for Part 2 of “So, You Have An Ostomy…”, Wednesday (September 23rd) we’ll cover diet recommendations, how to pack when you’re traveling, and how best to change your bag.

Ignorance is not bliss: Get health screenings outside of your IBD

It’s often said managing IBD is like having a full-time job. Along with the regular visits to the gastroenterologist, all the blood draws, scopes and scans, we also have to juggle taking and ordering medication (dealing with insurance!), listening to the symptoms our body is speaking to us throughout the day, knowing when we need to slow down…and the list goes on.

One aspect of taking care of our overall health that is often not discussed is the importance of staying on top of all the other preventative health checks—seeing the dentist two times a year, getting a vision screening, having a well-woman visit, and getting a full body skin check by a dermatologist, to name a few. pexels-karolina-grabowska-4386466

As we all continue to navigate the choppy waters of this pandemic, being proactive with medical care has been a bit more challenging. Appointments may have been canceled or delayed. The stress of going somewhere for an in-person appointment may seem risky to you, but it’s imperative we all stay on top of our most important job of all—staying as healthy as possible. Because even if your Crohn’s is in remission, your disease, and the medication you take to treat it, can put you at greater risk for other health issues.

Did you know?

According to the American College of Obstetricians and Gynecologists, women with IBD, especially those on immunosuppressants may be at increased risk for cervical dysplasia and abnormal pap smears. Meaning, we’re at a greater risk for abnormal growth of cells on the surface of our cervix that could potentially lead to cervical cancer. Get those pap smears! I visited my OB-GYN and had my well-woman visit a few days ago.

The same goes for seeing a dermatologist. Those of us on immunomodulators or immunosuppressive therapies may have an increased probability of developing malignancy, including non-melanoma skin cancer. I went to the dermatologist this past week for a full body screening. I had a small atypical mole removed from my back that I wasn’t even aware of. Even though atypical moles are not always skin cancer, having these types of moles can be a risk factor for one day developing melanoma. I’ll admit, I haven’t been the best about staying on top of this aspect of disease management. The last time I had been to a dermatologist was 2005, because I was dealing with acne from the prednisone I was taking.

Although medications that manage Crohn’s and ulcerative colitis are the most significant contributor when it comes to our risk of skin cancer, it’s believed having IBD alone can also lead to an increased risk of melanoma.

It’s recommended by the National Cancer Institute, that people with chronic illness be extra vigilant about sun protection. My dermatologist recommends wearing an SPF of at least 30 and having a yearly surveillance of my skin done.

Some researchers believe our faulty immune systems fail to detect cancerous tumors in our bodies and that the increased inflammation can make us more susceptible to certain cancers.

Dental, vision, and IBD

IBD can also make your dental health bite. Studies show people with IBD are at an increased risk of getting cavities and oral infections. While it’s not completely clear why this is, it’s believed our immune systems along with steroid-based drugs and even the acidity of our mouths, can cause our teeth to be weakened. dentist-4275389_1920

As someone who was forced (haha, by my mom!) to get braces, twice, I have always taken great care of my teeth. But, when I was pregnant with my son Reid, I did develop an abscess on my gum over my molars that luckily went away after he was born. It was unclear at the time if this was more pregnancy or IBD related. I know the thought of going to the dentist seems daunting since it’s such an invasive appointment where you can’t wear a mask while you’re in the chair, but when I went in for my cleaning last month, I felt completely at ease by all the safety protocols in place.

Whether you’re blind as a bat like me, and always get an annual vision screening to update your prescription and order contacts or if you have perfect vision, it’s important to get your eyes checked. Between 4-10% of people with IBD experience issues with their eyes because of their disease activity. Problems with your eyes can be a sign of a flare. During my visit with my ophthalmologist last month I was impressed by all the measures taken to ensure patient safety.

Take time to take care of you

Trust me, I get that life is busy and these times are scary. But, you’re doing yourself a huge disservice if you don’t take advantage of the preventative medical care that is available so you can be proactive should an issue outside of your IBD arise. While telehealth is great to take advantage of when you can, for many of these appointments, you do need to be in person. If you’re worried about this, you can ease your fears by calling the office prior to your appointment to learn about what measures the office takes to protect patients. Whenever I start an appointment I always let the person taking care of me know that I have Crohn’s disease and I’m immunocompromised because of the medication I take.IMG-7443

I don’t particularly enjoy any of these appointments, but I always leave with peace of mind that I’m doing everything I can to be vigilant and healthy not only for myself, but for my family. I often find I get more anxious for these “other” appointments than I do seeing my GI, because I feel much more confident about how I manage my Crohn’s and the way my disease process manifests. Don’t do all the work to keep your IBD in check and forget about the rest of you.

I’m typing this article with a band-aid on my back and a slight burning sensation in my shoulder from the biopsy, with the hope that my experience implores you to make an appointment and get all your ducks in a row when it comes to all your “other” appointments. Yes, I know it’s a lot, but ignorance is not bliss when it comes to your overall well-being.