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

IBD and Adoption: Insight from a Crohn’s mom about the journey

When you have IBD, the path to motherhood can look different for many. There is added stress about whether your body can create and sustain a new life successfully. There’s worries about flare ups and medications and how to stay well-managed while keeping the health of your unborn child in mind…just to name a few. For 30-year-old, Audrey Bolton, of North Carolina, adoption had been a calling in her life since high school when she stood at the airport and watched a family friend bring home their daughter from Guatemala.

She knew from that day forward, she would adopt one day. What she didn’t know is that she would be diagnosed with Crohn’s disease 10 months after getting married and struggle to conceive. This week on Lights, Camera, Crohn’s, Audrey shares her journey of becoming an IBD mom through adoption and what she wants others to know about the process.

NH: Many women with IBD fear their bodies are incapable of carrying a child/or are told they aren’t well enough. What would you like to say to them?

AB: “I would tell them that every journey to parenthood looks different, but at the end of the day, we are all moms. I think it depends on everyone’s situation and it’s a conversation they need to have with their doctor(s) and their spouse. For me, I was sick at the time my husband Crawford and I wanted to have a baby. I was not sick enough to where I wouldn’t be able to parent, but I do not think my body at that time could have been healthy enough to carry a child without problems. With that said, I’m nearing remission so I do still hope that one day we can have a biological child. If a person wants to be a mom, I fully believe that there are many different avenues a person can take to be a mother.”

NH: What are some of the struggles/challenges about adoptions that you wish other families knew?

AB: “Adoption comes from a place of brokenness, so while it is so beautiful that our son Camden made me a mother, it is not lost on me that his birth mother made a huge sacrifice that left a piece of her heart missing. It can be beautiful and heartbreaking at the same time.”

NH: Was the fact you had IBD ever an issue with adoption agencies?

AB: “Not at all! I love this question because I wasn’t sure what to expect when we started the process back in 2017. For all adoptions, you must complete a home study which includes health questionnaires, a physical, and several meetings with a social worker. In those meetings, we talked about my Crohn’s disease and how I was working with my doctor to treat it. If a person is well enough to parent and take care of a child, there are not any issues with having IBD and being eligible for adoption.”

NH: What are your tips for navigating the adoption journey with a partner/spouse?

AB: I could write a book on this one, but the truth is, Crawford has been my rock. He had no idea when he married me that I would be facing a chronic disease that would land me in the hospital multiple times a year for days on end. He has truly stuck by his vows “in sickness and in health.” I think the best tip I have for navigating Crohn’s with a partner/spouse is to communicate. Crawford knows when I’m not feeling well, the best thing for me is to rest and he makes it happen. He also is my voice of reason and tells me if I’m doing too much or if I need to say no to some obligations so that I can properly rest. Communication is key!

NH: What was it like when you first met your son Camden?

AB: “I always envisioned the moment we laid eyes on our son to be beautiful and the best moment of my life. When we arrived at the hospital, we had not slept in 24 hours and had driven straight through the night. We thought we would be meeting our son, but we were told he was being transferred to a Children’s hospital for further testing on his heart. He was hooked up to all kinds of wires and it was one of the scariest moments of my life. We only got to see him for about an hour before the ambulance came and took him to the Children’s hospital. It was whirlwind of a day, but God saw us through it and the next day, he passed all of his tests with flying colors and I was able to bond with my baby for the first time and have my “beautiful moment.”

NH: What’s been the most magical aspect of being an adoptive parent?

AB: “Most days, I forget that Camden is adopted. He looks just like Crawford and he’s been with us from his second day of life, so he belongs with us. Every now and then, I will have a moment and remember that he has another mom somewhere out in the world. I always say that she is my hero because she chose life for her baby boy and I would say that has been the most magical part for me. Knowing that I owe everything to a woman that I have never met. I pray that she has peace in knowing how loved he is on a daily basis.”

NH: If someone is on the fence about adoption–what would you tell them?

AB: “Pray, pray, and pray some more. If it is God’s will, he will give you that peace. I receive messages every day asking how the process works and people are scared about the cost. If it’s meant to be, don’t let the cost stop you! There are so many ways that it CAN be done.”

NH: You recently announced you’ll be adopting baby number two in 2021, you must be so excited! Did that process differ at all from Camden’s?

AB: “We are extremely excited. So far, it is the exact same because we are going through the same agency. I’m sure there will be some bumps along the way, but we are so excited to bring home baby #2.”

NH: How has already being an adoptive parent helped you through the experience this time around?

AB: “I know what to expect this time, so I am better prepared for the timeline and the traveling that is involved. With that said, our adoption with Camden was extremely quick. I was at work one minute, waiting for the phone call to meet a birth mom and the next I’m told that there is a baby waiting for us to come get him. There was no time to think or for anything to really go wrong. That makes me a little more nervous this time, as I know that it doesn’t normally happen that fast. I’m just praying that everything happens the way it should in the Lord’s timing.”

NH: How has faith played a role in how you navigate your IBD and motherhood?

AB: “I would be lying if I said I never questioned why God would allow a 25-year-old newlywed to be diagnosed with a chronic disease with no cure. It has been a tough journey, but I think God has shown me a glimpse of how strong I can be in tough situations and it ultimately prepared me to be a mother. Not long after we brought Camden home, I had a full circle moment one night while rocking him to sleep. I realized that Camden would not be in my life if it had not been for all the trials I faced with my health and months and years of seeing only one line on a pregnancy stick. While the journey was really difficult in the moment, it is the privilege of a lifetime to know God handpicked me to be Camden’s mother and that He was with me through all of the really low times.”

Connect with Audrey on Instagram: @audreyabolton

Click here to check out her blog.

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.

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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.”

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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.

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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.

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: A Look Into Your Future and How to Support a Loved One—Part 4

For anyone with chronic illness, it’s safe to say living with a disease gives you perspective. Your patient experience and journey shapes you in ways you may never have imagined, until you’ve lived it—persevered—and can look back at all you’ve overcome to get to where you are today. In Part 4 (the final installment) of “So, You Have An Ostomy,” we dig deep into what ostomates wish they knew that they know now, how best family members and friends can offer support, and why some choose to show their ostomy and others do not.

Before we get started, here are links to:

Part 1: Coping with the Complexity

Part 2: Tips for Travel, Diet, and Bag Changes

Part 3: Recommendations for dating, intimacy, naming your stoma

What Ostomates Would Tell Themselves If They Could Go Back in Time

Brian Greenberg wants anyone who is contemplating getting an ostomy to know that life doesn’t end after surgery, it begins again. He says after being sick and thinking an ostomy would be worse, it gave him his life back. He went from being in bed and alone to being an Ironman and marrying the love of his life.

“There are a lot of ostomates out there and none of us are recreating the wheel. If you have a fear or question, chances are there is someone who already has created a solution. I went from being bedridden to completing a full 140.6-mile Ironman, which showed me anything is possible. My ostomy has allowed me to not only live a normal life, but a good life.”

Ashley Clark says she used to be scared to leave the house. Her ostomy has given her freedom that she never had before.

“Prior to my ostomy, I didn’t want to make new friends or spend time with people I wasn’t comfortable around, I had no energy and I felt like I was trapped inside this body that couldn’t do all the things my brain wanted to do. Since my ostomy, I feel like I’ve gotten myself back in a lot of ways. I make plans again and I travel and spend time with people I love. I don’t take life for granted.”

When Michel Johnson thinks about when he had an ostomy, he says it not only saved his life, but taught him to reframe the tough times. He believes he became a better person in many ways and that his level of gratitude and compassion for others grew exponentially. He’ll always remember when he had his first bag leak in public the first time he left the house after surgery.

“I was in at a grocery store and struggling to change my bag in the restroom. I got poop on my shirt. I was embarrassed. A lady noticed the supplies in my hand and the mess on my shirt when I went into the restroom. She told me she was a nurse. She had a store employee block the bathroom door and she came in to help me, even gave me her blouse to wear (she had a tank top on under her blouse). I cried and hugged her so tight. Couldn’t believe she was so sweet to me in my time of need. It’s moments like that, which change a person.”

Alison Rothbaum credits her ostomy for allowing her to be alive. She says she wouldn’t have made it beyond age 23 if she didn’t have her colectomy. Since surgery, she’s been able to travel, work, and actively participate in the lives of her nieces and nephews. She advises ostomates to cut themselves some slack and acknowledge how far you’ve come every step of the way.

“You’re learning a new lifestyle of personal care externally and recovering internally. There’ll be days you are so upset, and then there’s days you only remember you have an ostomy when you go to the bathroom. This new life may have not been what you had in mind years ago, it may not be ideal, but it’ll be ok.”

Gaylyn Henderson created Gutless and Glamorous, a non-profit organization, as a way to empower and uplift those living with chronic illness and to raise awareness and erase the misconceptions of living with an ostomy. She doesn’t want others to suffer because of the fear of being stigmatized; it’s her goal to eradicate the stigma.

“Through it all I have learned to remain constant in my beliefs and that is to not let the beliefs of others control how I view myself. I’ve learned the importance of loving myself and staying true to myself and knowing I am capable of overcoming anything. I’ve learned that one of life’s most rewarding challenges is to accept yourself for who you are and all that you are completely and consistently. I am so in love with my new body; my new body saved my life in more ways than one.”

Loved One or Friend an Ostomate? Here’s how you can offer support

Listen. Listen. And listen some more. And be there. You don’t have to know what to say, you don’t need to have the right words or give advice. Let your loved one or friend know they are not alone and don’t pretend to understand what your loved one is going through, because you simply can’t relate (unless you’re an ostomate yourself)! Ostomates say when they complain or having a hard day, they just want to be heard and believed.

Karin Thum says to find your tribe and love them hard, “It may be a friend, or maybe a family member. Someone who doesn’t have Crohn’s or ulcerative colitis may not fully understand. But the right support won’t try to understand. They’ll just want to be there for you.  Let them. It’s hard for those closest to us who love us to watch us go through what we do.

IBD mom and ostomate, Byrd Vihlen, recommends loved ones to ask questions and take the time to learn more about ostomies, the disease, and what this means going forward.

“This surgery is NOT A CURE. Knowing that you care enough to want to be educated means the world. I would also advise that going into surgery, the recovery could be very different than what is described by the doctors, prepare for that emotionally so you can better support your family/friend…and not put any extra unnecessary stress on them during a fragile time. Empathy goes a long way.”

Speaking of empathy, Tina Aswani Omprakash recalls how one of her friends once insisted on watching her change her ostomy bag. As first, Tina says she was freaking out saying no. But now, when she looks back, she realizes that was one of the most supportive experiences.

“She asked questions as I went along and was curious to understand how it worked and why people felt such a stigma around it. It made me feel like a human being and that someone actually cared and wanted to learn and support me. I’d say if you’re close family, be there when the ostomy nurse is teaching how to change the bag. Oftentimes, we are in such a rut and on painkillers that we have no idea what’s going on. Support us, ask questions, be there and take notes. It can only help.”

Kristina Schook, 24, of New York, was diagnosed with Crohn’s when she was eight. She needed an ostomy when she was in high school and says the entire experience was insanely hard on her. Her bag would constantly leak, and it messed with her self-confidence. She says she had to alter what sports she played because of the leakage, but is thankful she was never judged by her peers. When it comes to advice for family and friends, Kristina says, “Just let us rant if we are upset. Don’t tell us you understand because our intestine is literally out of our body. It’s extremely hard to deal with mentally. For me, reversal was a great option and I don’t regret it.”

Jordan Ditty says patience is key.

“This is a big change. There will be a lot of emotions around it whether it was planned and wanted, unexpected, or they were dreading it. Offer to sit with them while they change their bag, watch a movie together, bring them coffee, listen to their frustrations, hold them when they cry, they need your support. While at the same time don’t treat them any different, this ostomy did not change who they are as an individual.”

Lindsay Dickerson says if you care about someone with a digestive disability and ostomy, recognize the mental toll their patient experience can cause.

“We are shuffled from specialist to specialist, appointment to appointment. There are days we can’t function and (personally) I feel worthless as a friend, wife, mother, and person. Educate yourself on your loved one’s condition. Support them when they feel down. Help them understand it’s not their fault, even though we will feel like it is at times. On the days they need that extra help – give it to them. There are days we can’t do it all and need this help, it’s a lifetime condition. Empathy and love are what we need and the more you give of it the better.”

Showing Your Ostomy Bag to Others

Whether or not you choose to show your ostomy bag publicly is a very personal decision. Some people feel empowered by it, others prefer to be more discreet. You do you, boo boo.

Natasha Weinstein says sharing her ostomy with the world is so much fun. When she first got her ostomy, she would put duct tape all over the bag, thinking it would make it more “socially acceptable” for people to see. Then, she realized a few things.

“Number one—duct tape is uncomfortable. Number two—I was going through a lot of bags and duct just to go swimming, which made the bags heavy! Number three—the bags are already skin colored so what was I doing?! Once I got rid of the duct tape, everything got easier and all I had to do was choose my bathing suit of the day. Now it’s become routine to take a post-race photo with Ziggy out wearing my medal because we’re accomplishing and conquering life together.”

Tionna Forchion says being transparent about her life with an ostomy has been extremely fulfilling.

“I hid my bag from family and friends for many years and now I openly post pictures on social media showing my ostomy and it feels so empowering to show the love I have for myself in my entirety, and that includes my ostomy bag. It’s rewarding when other warriors on social media write me messages saying that me posting pics showing my bag has helped them embrace and love themselves flaws and all. That’s really why I do it, to inspire others to love everything about themselves and so other ostomates know they are not alone.”

Sahara Fleetwood-Beresford shares her ostomy with world so that people can see that it’s ok not to be like everyone else. She doesn’t feel embarrassed or ashamed and doesn’t think of her bag as an issue. “It is what it is—it’s part of me. The same as my moles, scars, stretch marks, etc.”

Speaking of scars (or battle wounds as I like to call them), Lindsay says, “I love showing off my ostomy.  I’ve had 14 surgeries in my lifetime at this point and the ostomy is a symbol of everything I’ve overcome and how I’ve taken the steps to improve my life for the better. All bodies come in different shapes, sizes, and abilities. I feel confident with my ostomy out and welcome anyone who has questions about it!

Payge Duerre says showing her ostomy doesn’t phase her anymore. She says it doesn’t make her feel empowered, either.

“I post for others. I show for others. I show and post because I’m 110% okay if I get hate or negative comments. I might cry if there are mean people, but I truly post and show my ostomy because I’m confident about it and hope to support others by doing so. My ostomy has completely changed my life for the better. There is no possible way I’d be this healthy version of me with my colon. I no longer shit my pants, I can travel more than five minutes away from the bathroom, I’m not missing every other day of work/school/events because of pain so immense I can’t get off the couch. I don’t have to spend an entire day every four weeks getting my infusions.”

Tina and many others I interviewed, choose not to show their ostomy or their stoma. But each ostomate said they respect the many people who do.

“I don’t feel that I need to show it to talk about it or to empower others. Culturally speaking, I think for me, it’s better left to the imagination. I do show what a stoma bag looks like and show different activities you can do with an ostomy but I think this is an individual’s choice to show or not to show and still feel empowered.”

When Life Comes Full Circle

Over the course of the past few weeks, I’ve had the privilege of connecting with more than 20 ostomates around the world who have candidly and whole-heartedly shared about their personal experience. As someone with Crohn’s who does not have an ostomy, I consider your ostomy a symbol of strength and survival. What each ostomate endures prior to surgery, through recovery, and in life, takes patience and perseverance. It takes strength from within. A strength I can’t even begin to fathom. Ostomies are a visible reminder of the often invisible battles those with IBD and other digestive diseases face while having chronic illness. It’s normal to grieve and be devastated. From what I’ve learned through these warriors, the best way to view life with an ostomy is to think of all the positive it will bring to your life and how it will improve your health and condition. Shifting your perspective and thinking of your ostomy as a gift rather than a curse seems to be the best medicine of all. Thank you for following along through this series. I hope you feel better educated about life with an ostomy and have learned something, I know I did!

Celebrating Ostomy Awareness Day (October 3rd, 2020)

This year marks the 10th Anniversary of National Ostomy Day. This day serves as an opportunity to spread awareness about ostomy surgery.

Twitter Chat (#ddhchat): Diet and Digestive Health Chat about Nutrition for the Ileostomy hosted by ostomate Tina Aswani Omprakash and Neha D. Shah, MPH, RD, CNSC, CHES Friday October 2 at 12 p.m. EDT.

Check out this Facebook Live hosted by United Ostomy Associations of America, Inc. at 12 p.m. EDT, October 3.

Run for Resilience Ostomy 5k (Virtual)—Saturday, October 3

Gali Health will be sharing videos from ostomates—connect with them (@GaliHealth) on Instagram, Twitter, and Facebook.

Helpful Resources:

Crohn’s and Colitis Foundation

United Ostomy Associations of America, Inc.

Ostomy Support Group Finder

The J-Pouch Group

WOCN: Wound, Ostomy, Continence Nurse Society

“So, You Have an Ostomy”: Recommendations for Dating, Intimacy, Naming Your Stoma, and Dressing—Part 3

Dating with IBD can be daunting. Add an ostomy to the mix and that stress is amplified ten-fold. In Part 3 of “So, You Have An Ostomy” hear from several ostomates about navigating relationships, intimacy, discovering what clothing and undergarments work best, and why some choose to name their stoma and others don’t.

Before we get started, here are links to:

Part 1: Coping with the Complexity

Part 2: Tips for Travel, Diet, and Bag Changes

Dating and finding the one with an ostomy

Brian Greenburg, 37, of New York was diagnosed with Crohn’s at age 11. He has a permanent ostomy and “Ken Butt”. As a married man, he reflects on what it was like to be part of the dating scene.

“The best piece of advice I was given about dating is that my ostomy won’t keep me from meeting the “right one”, it will keep me from trying to be with the “wrong one”.

Read that again. It’s powerful and so, so true for anyone with a chronic illness. Brian advises it’s best to talk confidently about your ostomy and not to shy away from communicating with your partner.

London Harrah, 29, of California, was diagnosed with ulcerative colitis two years ago. From the get-go, his gastroenterologist told him there was a possibility he was going to need an ostomy. At first, London was completely against the idea. His disease didn’t give him any other choice and he ended up with an ileostomy.

“I was having 20 bowel movements a day and throwing up at least one time a day and I was losing a lot of blood. I mentally and physically got to the point where I could not take it anymore and after countless visits to the doctor and attempts at different medicines, I told them that I wanted to proceed with the surgery. I had basically given up on any and all expectations on what I wanted my life to be and had accepted that I just needed to feel better.”

London recalls making his first post about his ileostomy on social media and expecting that no women would be interested in him because of it. He was single when he had the surgery and had accepted he was going to be alone the rest of his life.

“Over time I gained more and more confidence and ended up testing the waters with talking to women. I soon was able to figure out that, if anything, having this surgery just assisted me in weeding out the bad apples. There are a lot of people out there who see beyond the surface of someone and will accept you for the person you are.”

London is currently in a new relationship and just got past the peak of explaining everything about his ileostomy in detail with his girlfriend. He says he feels a lot better knowing she accepts him completely.

Jordan Ditty says she was worried going into surgery not how it would impact her marriage, but moreso that her ostomy not only affects her life, but her husband’s as well.

“Going through surgery, seeing my stoma, sharing the frustrations and wins, naming my stoma together…it all brought us closer. If you ask my husband, he will tell you it did not impact him at all, he was happy that I was no longer in pain and we were able to live.”

As far as intimacy goes, Jordan says she was nervous, but that her ostomy did not affect a single thing.

“I personally always empty right before we do anything then just fold it up, so it is not flapping around between us. There are also many options out today for ostomies, crotchless lingerie that keeps your bag in place if you don’t want your partner seeing it, high waisted options, belts, etc. Find what makes you comfortable, just remember you are still you, beautiful as ever because you are finally healthy!”

Andrew Battifarano is a 26-year-old in New York, as far at the dating scene in the Big Apple, he says he’s usually open about his ostomy and finds it’s beneficial for both sides. Andrew says most people are super accepting and appreciate his honesty.

“There are those who are grossed out and don’t want to deal with someone who has an ostomy. It’s good to know who wants to be in your life and will accept you no matter what early in the process rather than later. I think everyone has their own methods, but I stand by being forthright early on so you can tell a potential partner what it is and hopefully educate them a little bit.”

Payge Duerre met her boyfriend after she had an ostomy. She says he saw her bag in a photo on her Tinder profile and stalked her ostomy Instagram before they met in person.

“He had actually said that my ostomy was a small part of what drew him to me, he could only imagine how I was living, and he wanted to take care of me like no one else did. It did not impact being intimate at all. We both think scars are more beautiful than untouched skin. And it has helped my intimacy. Not having that pain and sickness wearing me down all the time, or not worrying about using the bathroom in the middle of being sexy has helped me.”

Richard Harris, 39, of the United Kingdom was diagnosed with ulcerative colitis when he was 23. He says his girlfriend at the time of diagnosis and his first surgery is now his wife and the mother of their two boys.

“We’ve really been through it all together. She visited me in hospital when I was sick and had lost more than 3 stone (40-plus pounds!), so I think she saw it as a life or death thing too. Post-surgical recovery, intimacy took a while, but we got there in the end. The Coloplast Senusra Mio has a handy fold up feature with some Velcro to tuck the bag away which I tend to do.”

Tim Albert’s girlfriend has been by his side through it all, too.

“Initially I was concerned she wouldn’t want to deal with the struggles an ostomy brings, but she has proven time and time again that she has my back with this. For me, it wasn’t easy to be intimate, simply because I didn’t have the core strength. I physically couldn’t perform like my old self, and that was a tough pill to swallow. With time, I got stronger and that aspect of our relationship became fun again.”

Lindsay Dickerson says her ostomy did not impact her husband at all.

“He assured me multiple times that I am just as attractive, and it does not take away his sexual drive for me (just being blunt). However, as confident as I was with showing my bag off for others everywhere else, the bedroom was a different story. Finding lingerie that is “accessible” to your significant other but covers up the bag has helped me with confidence. Switching brands helped also – Hollister was super loud, and you always heard it during sexy time. The Coloplast Mio makes no noise.”

Byrd Vihlen says her husband is very information oriented and learned the ostomy terms before she did from reading an informational packet provided by the hospital.

“He helped me empty my bag, with no hesitation, for several days after surgery when I was unable do it. It was truly a sign of unconditional love. If your significant other cannot accept that you need an ostomy bag, their love is conditional.”

To name a stoma or not to name a stoma

Of all the ostomates I spoke with—it was a mixed bag (no pun intended!) when it came to those who choose or chose to name their stoma and those who do not. Each person’s reasoning and explanation made a lot of sense.  

Tina Aswani Omprakash said her husband named her stoma “Snuffleupagus” in the hospital after surgery since it resembled the snout of the Sesame Street character. She also calls him “Bebu” which is a loving term that means “baby” in Hindi.

Sahara Fleetwood-Beresford’s experience is unique in that she has gone back and forth through her journey.

“I did not name my first one. I named my second one because I read it could help with acceptance of it. It DID make it easier to talk about to people. I do still consider my current stoma to have the same name, but I don’t often refer to it by name anymore. I usually just say “my stoma” because I felt like referring to it by name almost made me think of it like a sperate entity, when it’s not. Porta didn’t shit in the shower – I shit in the shower! Porta is not farting – I am farting. You get the idea.”

Jordan Ditty and her husband named her stoma “Norman”.

“We call him Norman when he is being difficult and Norm when he is being good. I thought it was silly at first to name him, but after a few weeks of being home with it, we came up with a name. It normalized it, made it easy to throw into a conversation, my friends and family all refer to my stoma as Norman.”

For those who haven’t chosen to name their stoma, the consensus was that it’s “just a part of them and not separate.”

Clothing preferences

  • Ostomy Secrets Underwear for Men—supportive and comfortable
  • Ostomy Secrets Wraps for Women—helps keep everything secure
  • High waisted tights, leggings, skirts, dresses, and jeans
  • American Eagle jeans
  • KanCan pants—with their stretch to allow the bag to grow
  • Vanilla Blush Hernia Support Vest for strength exercises
  • LuLu Commission Pants (for Men)
  • Aerie leggings and underwear for security and flexibility with an ostomy
Gaylyn Henderson modeling for Aerie as a proud ostomate.

Natasha Weinstein recommends discussing ostomy accessories with your care team.

“Would you do better with an ostomy belt? Are you active? Do you like to run, hike, bike, swim? You can still do these things! I am a runner and started running because of the Crohn’s and Colitis Foundation’s Team Challenge program and continued running despite my Crohn’s. Having an ostomy has made it easier for me to run since I am less worried about when I’ll need a bathroom next. Like more extreme sports? On my 27th birthday Ziggy stoma (yes I named mine and I recommend you do too – it helps with acceptance and I have all my friends referring to him as Ziggy), well Ziggy and I jumped out of an airplane! IT WAS A BLAST! What I promise is you can truly do anything you set your mind to, and your new ostomy will be along for the ride.”

Stay tuned Wednesday (September 30) for the final piece in the Lights, Camera, Crohn’s “So, You Have An Ostomy” series. A look at the perspective gained, advice for caretakers and family members, and incredible stories of ostomate perseverance that are sure to inspire.