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

“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”: Tips for Travel, Diet, and Bag Changes—Part 2

Navigating life with an ostomy takes patience and persistence. The adjustment is not only emotionally and mentally taxing for many, but the physical day-to-day takes some getting used to as well. In Part 2 of “So, You Have An Ostomy,” I interviewed ostomates about everything from diet, to bag changes, and how best to pack when you’re away from home. It’s my hope that by hearing these words of wisdom, that you’ll feel better equipped and more at ease should you need to make these lifestyle changes for yourself.

Discovering Your “New” Diet with an Ostomy

After ostomy surgery, it’s recommended to stick to a low residue diet for about six-eight weeks. Once you reach that point in recovery, work with your surgeon and GI dietitian to reintroduce foods one by one to see how you tolerate them. Hydration is key every single day. When you are outdoors or more active, you will want to make sure you hydrate before, during, and after, not only with water, but having some sodium and sugar in your system for better absorption. This can either be a homemade mixture, powders (ex. DripDrop, Liquid I.V.), or premade drinks (ex. Pedialyte, Metamucil Water, or Gatorade). Ultimately, you want to keep a pudding consistency of output.

If you’re eating high fiber foods like nuts and raw veggies and fruits, ensure you are chewing well, eating a bit slower, and drinking water throughout the meal, as these foods are harder to breakdown.

Sahara Fleetwood-Beresford, 32, of the United Kingdom, was diagnosed with ulcerative colitis at age 19. Since then, she’s had three stomas. When it comes to diet with an ostomy, it’s very much trial and error, like it is with IBD. For many, marshmallows, unsweetened applesauce, and peanut butter are the ‘go-to’s’ to thicken output, but unfortunately those don’t do the trick for Sahara.

“My main piece of advice is not to be afraid of trying things. If you chew thoroughly, that minimizes the risk of blockages. Your stoma will be settling in for up to twelve months, so if something doesn’t agree with you in the beginning, try it again later. My diet is healthy now, thanks to my stoma. I can eat all of the fruits and vegetables that I couldn’t eat before due to pain caused by strictures.”

Karin Thum, 42, of Florida, battles not only Crohn’s disease, but Spina Bifida. She says an ostomy isn’t as bad as it seems and that in time, you’ll find it’s the best thing you could have done for your health and your quality of life. When it comes to her top dietary hack she says, “I’m a salad girl. I learned from my doctor to use scissors to cut up lettuce so that it’s easier to digest. This way I don’t have to give up eating salad completely and can enjoy one of my favorite foods in moderation.”

For Andrew Battifarano, 26, of New York, he noticed he has higher output after having a sugary drink, like soda. Steering clear of these has helped his bag from filling up so quickly.

“At the same time, I try and have as much water I can tolerate. You can easily get dehydrated without even realizing it (I have and it’s not fun), so staying on top of that is super important. And eating less at night, or having smaller meals spread out will make you have less output when you’re sleeping, which might help prevent any leaks and also let you sleep longer without having to get up during the night.”

Tim Albert, 32, of Wisconsin, received his ostomy this past November. If he ever feels dehydrated, he swears by DripDrop ORS. He says if he drinks 16 ounces of water with DripDrop he starts feeling better in 30 minutes.

“As far as output, I’ve learned to think of things the same way a diabetic might manage their blood sugar. If I eat something that will water down my output, I need to counter it with something that will thicken it. Foods are going to be different for each person, but for me, I am able to thicken things up with apple sauce. I like to buy the little pouches; they are great for on the go.”

Sarah Byrd Vihlen, 33, of Georgia was initially diagnosed with ulcerative colitis in January 2014, but has since been switched to Crohn’s. She underwent subtotal-colectomy surgery right after bringing her two-year-old daughter, Penelope, into the world via c-section. Talk about a rockstar IBD mom. When it comes to diet, she says it’s very much like what you’re told with IBD.

“I typically avoid anything with large seeds or nuts, and if I do eat them, I chew thoroughly, the same with fruits and vegetables that have skin. I still do not eat popcorn. Since getting an ostomy I have been able to eat a wider variety of foods than before, but I have heard mushrooms are dangerous and I miss eating them a lot. To thicken output I eat marshmallows, rice, potatoes, and bananas.”

Some foods are known to increase output and gas. Carbonation drinks, chewing gum, and even something as simple as using a straw, can increase your gas ingestion which will need to be expelled. The challenge is, what may increase one person’s output, may not for someone else or vice versa.

Oh, The Places You Will Go…With an Ostomy

Once it’s “safe” to travel post-pandemic (can you even imagine?!), there’s a lot to keep in mind when you’re packing your bags and you have a bag. The first rule of thumb—be overly prepared and always carry-on your supplies in case your suitcase gets lost. Ostomy supplies are needed to be temperature controlled; they are permitted to go through TSA as carry-on.

Be proactive and if you need to cut your wafer, try to cut some before you travel, and pack your favorite scissors in your checked baggage. The consensus among all ostomates I spoke with—pack extra of everything. You don’t know if you’ll have a defective appliance or have any issues arise while you’re away from home.

Natasha Weinstein always considers how long she is traveling and how she is getting to her destination. She says, “I always pack for up to 3 changes a day. If I am flying, I pack a bit more, as air travel seems to affect my adhesive. I seem to do better with car travel. If I am being exposed to extreme temperatures or my itinerary is more active, I take that into account. I do everything I can to alleviate any possible stress about supplies, so I can enjoy my vacation.”

Double and triple check to ensure you have all your supplies and bag changes packed before you head out the door. An ostomy isn’t like a regular prescription; it can be impossible to find when you’re in another city and you’re simply out of luck at that point. Many of the ostomates I talked with recommend organizing your supplies in a travel toiletries holder.

For additional travel—both domestic and international—with an ostomy, check out this helpful article by ostomate, Tina Aswani Omprakash.

Ch-Ch-Ch-Changesss…the ins and outs of changing your ostomy bag

How long a bag will last varies depending on a few different factors: activity level, weather, bathing, sleeping, etc.There isn’t a one size fits all for bags, it takes a while to figure out which appliance and ‘accessories’ work best for you, that can also change over time, even after you think you have found the right one. Skin allergies are common. It’s best to get free samples from several different companies and try them out. Deodorizing & lubricating drops are also helpful.

For any new ostomates, if insurance/payment allows, it’s recommended to have an ostomy home care nurse help you through any trouble shooting with changing your bag at home.

“I don’t know what I would have done without my ostomy nurse, she was an absolute angel. She would come weekly and was able to talk me through problems I was having and give me several new tips. If that’s not available, several people on social media have videos posted. Organizing your supplies is important too so you know your inventory levels and don’t run out. I have a small stocked caddy in my bathroom ready in case I need to do a middle of the night bag change,” says Byrd.

Byrd typically changes her bag every four days, but has gone longer on occasion. Morning bag changes seem to work best for her (before she eats anything) otherwise she says you can wind up with a mess.

Lindsay Dickerson, age 30, of Georgia, was diagnosed with colonic inertia, gastroparesis (digestive tract paralysis) at the age of 17. When it comes to changing her ostomy, she says it’s key to lay out all your supplies prior to making your first move.

“Know you have everything there, so you don’t have to run to your supply closet and risk a spill. I use a grocery bag and tuck it into my waistband to collect any output and trash.  When I used the Hollister brand, I had a thousand supplies that went into a bag change. Now that I’ve switched to the Sensura Mio Convex 2-click appliance, I need the wafer, a bag, and skin-tac that helps the bag stay on longer. My Hollister (which I used for 3 ½ years) lasted two days; my Coloplast Sensura Mio lasts at least 5 days.”

Lindsay recommends always having a water bottle with you when you empty. Since output can be sludgy and hard to empty, it enables you to rinse your bag with some water after you’ve dumped it. She says this tip will change your life!

Michel Johnson, 56, of Tennessee, had a temporary ostomy for nine months. He recalls changing his bag every three to four days. At first, he said he would relive the trauma every time he had to change or empty it, but then his perspective shifted.

“I realized my ostomy saved my life. Rather than moping around, I brought a music speaker in the bathroom and created a dance playlist for my bag changes. I looked forward to it! I danced and sang while I changed my bag. Doing this completely reframed how I looked at this process.”

Several ostomates also mentioned showering bag free and what a wonderful feeling it is to not have anything attached to your body. Just remember to keep soaps and shampoos with perfume and moisturizers away from your stoma and peristomal skin, as they can cause irritation.

Jordan Ditty, 27, of California, was diagnosed with Crohn’s at age 11. When it comes to changing her bag in public, she recommends hitting up Starbucks, as they usually have single bathrooms. If you need to change your bag in public, she says it’s also helpful to use the stall with the changing table so you can lay out all your supplies. Jordan always keeps disinfectant wipes in her bag along with extra paper towels to make sure she’s able to clean the surface area and stoma well.

“You can also sample different companies supplies for free. Email them with what you are wanting to try, and they will send you 2-3 of them as well as others so you are able to find what works best for you. In the past year and a half, I have changed my pouching system at least five times if not more to find what works for my skin, activity level, daily life, and stoma.”

Overall, the recommendation—expect the unexpected. You can’t control what the stoma does, so when it’s not cooperating, try your best to go with the flow (literally and figuratively!). And don’t wait too long to change a bag. If your skin is burning underneath, it’s probably leaking, change it. If you think the adhesive is coming off your wafer and may not last sleeping through the night, change it. Overestimate the time you will need and please give yourself grace upon grace.

Stay tuned for Part 3 of “So, You Have An Ostomy…” Monday (September 28th) we’ll cover disclosing you have an ostomy on a date, intimacy, styles of clothing and underwear that work best and the unique names some IBD warriors have for their stomas.

In case you missed it, click here to read Part 1 of “So, You Have an Ostomy”—The Complexity of Coping, which focuses on what it’s like to find out you need an ostomy, the complexity of coping, and adjusting to your new normal.

Living life unapologetically as a Black woman with Crohn’s disease

When Melodie Blackwell was initially diagnosed with Crohn’s disease in October 2018, she felt alone. Not because of how isolating IBD can be, but because she couldn’t find many people who were speaking about their journey from the perspective of what it’s like to be a Black or Brown woman in the IBD community. JPixStudio-8924 copy

When I looked for information from the IBD organizations, I felt like there was little to no one who looked like me. Sometimes, and history shows this, we can’t be unapologetic about being a person of color. We must tell our stories in a way that seems more digestible to White America. When I started sharing my journey, I wanted to reach those in the minority community from various walks of life who felt isolated or alone, to let them know they weren’t by themselves and there is a space where they belong. With my non-profit Color of Crohn’s and Chronic Illness (COCCI), I believe that’s what I have been able to do,” says Melodie. 

Dealing with feeling “uninvited”

As a wife, mom, entrepreneur, Black woman, and Crohn’s warrior; Melodie’s view of the IBD community has multiple perspectives. At this time, inclusion and diversity isn’t one that’s at the top of the list. “In order for any organization to be inclusive, they have to have to have a deeper understanding of a community. And when it comes to those who are in the Black community, most people don’t go where they don’t feel invited. Where does that thought process come from? Let’s talk about history and “whites only” venues, seating on the back of the bus, segregation ending less than 100 years ago, and the Tuskegee Experiment to name a few things. Many of us still have family members who can discuss all of the aforementioned like it happened yesterday.” IMG_4657

When it comes to Melodie’s thoughts on not feeling invited, “I am fine with that, because personally, I go where I am not invited. Not having an invitation doesn’t mean that I don’t belong. But as a culture, that’s not a resounding thought process. I know that that can seem odd, it’s a systemic issue. If you don’t know the culture, cultural differences, and historical oppression, you won’t understand that. There are some deeply rooted healthcare adversities – they live on today.”

Leading up to her diagnosis and even today, Melodie has dealt with ignorant physicians along the way. Her Crohn’s presented differently than most. It started with random body parts swelling. She had a doctor tell her she just needed to “squeeze those parts to help the blood flow”. She’s had doctors display their implicit bias and not listen…which resulted in abscesses bursting in her colon and emergency surgery.

Health equity isn’t given, it’s fought for

It’s the inequity that has inspired Melodie to go above and beyond and amplify her voice to show others they can do the same. She launched Color of Crohn’s and Chronic Illness (COCCI) to help lift people up and let them know they aren’t alone and they didn’t choose the challenges before them. She’s received countless messages from people embarrassed about their symptoms. Melodie is driven to show there’s no reason to feel ashamed about your IBD and she’s focused on creating a space that feels safe to get answers and receive help physically and mentally. IMG_1783

I want to empower people of color and beyond, to take control of their healthcare and not feel like they are a victim. I want them to have the resources that they need. I want COCCI to be readily available to help them find doctors, learn more about healthcare, provide a safe space to express their thoughts, help them advocate/lobby for their needs – I want health equity and to decrease the undeniable disparities in this community.”

Don’t be afraid to live

As an IBD mom and patient advocate, Melodie’s main advice is to live. IBD and chronic illness causes all of us to make changes and adjustments throughout the process, but we are still here, and we still can have full lives.

Some days will be tougher than others, but a mindset that says, “I choose Life” every single day, will change your life in the absolute best way,” says Melodie. “You set your limitations, and you determine your victories; don’t let IBD take that away from you.”

You can follow Melodie and COCCI on Instagram:

@melodienblackwell

@colorofcci

Check out her website

 

The Chronically Honest: The Inspiration Behind the Illustrations

She’s the person behind the artwork that has helped connect thousands of chronic illness patients on Instagram. I’m talking about a 20-year-old woman named Julia who created “The Chronically Honest” in hopes of making others feel less alone. Diagnosed in November 2019 after struggling with symptoms for three years, Julia is coming to grips with her battle against IBD in the middle of a global pandemic.

The first in her family to take this disease on, her experiences thus far have felt a bit isolating. As a college student, she often feels out of place amongst her peers.

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“When I was first diagnosed I really searched for something, whether it be art, or blogs that portrayed all the feelings I was experiencing and let me know that it was okay to feel them,” says Julia. “I was met with countless stories of positivity and turning a bad situation into a good new perspective on life. While I definitely appreciate that and know positivity is vital when dealing with IBD I was searching for something that showed struggle and depicted the crappy side of living with this disease (pun intended)!”

Striving to dig beneath the surface

With The Chronically Honest, Julia strives to show both the ups and the down of living with IBD. She hopes that by showing the struggles, she can make fellow patients feel better understood. Image

“My inspiration to create my illustrations often comes from struggles or triumphs I’m experiencing in the moment. If I am not doing well and have had a bad day, I will create an illustration that reflects that, and vice versa. However, I also get inspiration from others. If I am scrolling through my Instagram feed and see a quote that really resonates with me and my experience and I think it could help others, I will make an illustration based off that.”

Creating art to cope

“My art honestly helps me cope with my IBD more than I could ever imagine. It’s the best distraction and it’s a wonderful outlet for exploring and sharing my feelings. Often when I’m super sick or have to stay home because I’m symptomatic, I will channel my frustration and sadness into making art.”

Julia’s artwork can take her anywhere from five minutes to multiple hours. Some of her biggest fears lie in finding love, becoming a mom one day, and ultimately needing surgery. All aspects of living with IBD that many of us can relate to. Image (1)

The Chronically Honest is as beneficial to Julia as it is the rest of us. Her artwork exemplifies what so many of us feel throughout the rollercoaster ride that is life with IBD. As a 36-year-old, who has lived with Crohn’s for 15 years, I’m constantly amazed and inspired by the work Julia is doing to not only help herself, but others. Her art is raw and genuine—it will speak to you. You will feel seen. You will feel heard. If you don’t already, be sure to give The Chronically Honest a “follow” on Instagram.  She says if you want a custom illustration, you can send her a direct message!

 

Revolutionizing the patient experience through crowdsourcing: Use your journey to make a difference

This blog post is sponsored. All thoughts and opinions are my own.

Coping with chronic illness is complicated. When it comes to IBD, no two people have the same experience, but there are often many parallels and overlaps. Crowdsourcing is now being used to understand how to best treat chronic conditions, such as Crohn’s disease and ulcerative colitis. By empowering patients from all around the world to share information on a large scale and leveraging the power of advanced artificial intelligence to analyze and organize that data, StuffThatWorks is revolutionizing how medical research is done.

Chances are you’ve heard of the popular app, Waze, which allows people to build maps and share data with other drivers to bypass traffic. It’s an app my husband and I use all the time! One of the members of the Waze founding team, Yael Elish, started thinking about how crowdsourcing could be used to understand how to best treat chronic conditions. Yael’s daughter started to struggle with a chronic health condition and wasn’t responding well to treatment. Her illness was taking a heavy toll on the entire family. Yael Elish and daughters_1

“It seems like almost everyone dealing with an ongoing medical condition dedicates endless hours researching, speaking with others, and scanning groups in search of something that can help us feel, and live better. We want to know if there are treatments that will work better, if our side effects are unusual, or if diet or lifestyle changes could make a difference. We look for people like ourselves and seek to learn what works (and doesn’t) for them,” said Elish, Founder, CEO, StuffThatWorks.

When it comes to managing chronic illness, it’s much like trying to find the needle in the haystack—the one treatment that will work best for us. The power lies with patients. We are the people who have tried various treatments and know what’s worked best. Crowdsourcing puts patients in the driver seat. Large amounts of information can be gathered from millions of people worldwide.

“I want people to feel empowered – and validated. To realize that their point of view and experience is not only legitimate but is extremely valuable to helping the world understand illness and treatment effectiveness,” said Elish. “I want StuffThatWorks to be a place where patients can share their collective voice and be heard by the medical community.  Where patients themselves are able to impact and drive the research that is being done about their condition and play an active role in finding solutions that will help everyone with their condition feel better.”

StuffThatWorks Currently Serves 85 Condition Communities

As of now, more than 125,000 people are contributing members within 85 condition communities. Over 6.5 million points of data have been shared! One of the biggest communities (fibromyalgia) has over 15,000 members. PCOS has 12,000.

StuffThatWorks is looking to grow the IBD community.

Right now, there are three communities, IBD in general, ulcerative colitis, and Crohn’s. Of these three, Crohn’s is the biggest with 729 members who have reported their experience with 270 treatments. The ulcerative colitis community has 409 members and 155 treatments in the database.

SymptomsUlcerativeColitis

Take the UC survey: https://stuff.co/s/5sSltbnK

On average, Crohn’s community members report they have tried 6.2 different treatments, and 37% describe their Crohn’s as “severe.” By sharing treatment experiences, our community members can use data to help one another figure out which treatments are best for different subgroups of people.

“The power of this database is that it can reduce the years of searching for the right treatment or combination of treatments. Our platform lets people explore how different treatments work effectively together, and we’re able to analyze everything from surgery and medications to alternative treatments, changes in diet, stress reduction and more,” said Elish.

COVID-19 response

StuffThatWorks is in a unique and powerful place to help advance the research on COVID and understand how it impacts people with different chronic conditions. Who is more at risk? Does the virus present differently in people with certain conditions? Do certain treatments work better/worse for them?

“We are currently prioritizing COVID-19 research by inviting everyone with a chronic condition to contribute to the research by answering questions about their experiences related to the coronavirus pandemic, even if they do not have the virus. We are also inviting all current StuffThatWorks members to fill out the coronavirus questionnaire and contribute to this new research,” said Elish. “We’ve also set up a dedicated coronavirus discussion forum, where doctors are answering questions and providing important information about the latest research.”

In a time when many people are feeling anxious and alone—discussion boards are helping to bridge the communication gap and allow for people to connect with one another. StuffThatWorks community members are seeking support about decisions: Should I cancel my doctor’s appointment? How much am I at risk if I am taking immunosuppressants? How can I help my partner understand my anxiety about coronavirus?

The world is suddenly realizing that crowdsourcing is the holy grail of how to gather health care data on a large scale. The real-time nature of it is particularly important, and the ability to get data from such a vast number of diverse sources.

Crowdsourcing research is limitless: The hope for the IBD community

You’ve heard the adage “strength in numbers”. Once large numbers of people with IBD sign up and become members on this free platform, everyone from the newly diagnosed to veteran patients can find something new and continue to evolve and learn about their patient journey.

TreatmentCategoriesCrohns

Take the Crohn’s survey: https://stuff.co/s/bzqQR5xP

“I want people with IBD to feel empowered – that this community is THEIRS, not OURS – and that they can determine what it’s used for and how it can be most helpful. They can add new research questions, post personal discussions or experiences and ask others specifically what works and doesn’t for them,” said Elish.

As members of the IBD family, by joining this platform we immediately become part of a supportive community where we can talk with others just like us, either collectively, or one on one, about how we manage and handle the day-to-day with our IBD.

Driving Research through Patient Reported Outcomes

Patients like you and me have power to influence the research direction of the medical world. We are all a piece of the puzzle and play a critical role in helping with the future development of medications and treatments, and hopefully one day a cure.

So much medical research is done using small groups and funding for large-scale research is extremely hard to come by. The opportunities are endless with crowdsourcing, in terms of the research that can be collected and the solutions we as patients can only provide. LightsCameraCrohns-Blogpost_image

Whether it’s shortening the amount of time it takes to get an IBD diagnosis or helping people find optimal treatments quicker, by sharing our experiences we gain invaluable insight into improving our quality of life and managing our chronic illness. It’s truly a win-win for everyone involved.

Check out StuffThatWorks and sign up for free as a member. Take part in building a knowledge base aimed at figuring out which treatments work best. Your story. Your experience. It’s powerful and it all matters.

Healthline unveils new IBD app: What you need to know

This article is sponsored by Healthline. Thoughts and opinions are my own.

I met my husband thanks to a dating site nearly six years ago. I never dreamed I would one day be able to connect with fellow IBD warriors through an app, but hey thanks to Healthline, it’s now possible! IBD_Facebook_Ads-1200x628_Real-Life_5Over the next month, I’ll be partnering with IBD Healthline. I am so excited to share my journey using the app and explain how you too can benefit from all its invaluable features.

When I was diagnosed with Crohn’s disease at age 21 in 2005, I felt incredibly isolated, alone and scared. Like anyone with chronic illness, it can be difficult to not only articulate theses stresses but find people who genuinely care and empathize. The IBD Healthline app addresses this by providing a safe space to conversate with those who live your reality. By communicating with others in the IBD community, it empowers us and is a reminder that there’s a huge network of support right at our fingertips, 24 hours a day.

My favorite functions of the app

One of my favorite parts of Healthline’s IBD app is how it connects you with one new member each day, based on your disease, age, and lifestyle interests. You can check out fellow member profiles and request to connect, too! IBD_Facebook_Ads-1200x628_Real-Life_2I don’t know about you, but the more people I know with IBD, the stronger it makes me feel as I take on the disease.

Healthline’s IBD app is a great gathering place for our community to share experiences, learn from one another and offer support. Many of us tend to sugarcoat our day-to-day experiences, here you can be honest and trust that you won’t be judged for your struggles or setbacks. It’s intuitive and easy to use, whether you’re a patient or a caregiver.

Along with the personal connections, there are medically approved wellness articles IMG_0811and podcasts shared each week on everything from diagnosis to nutrition and self-care tips. The more educated we are about our illness, the better advocates we can be for our care.

Check out the Live Chats

Another great aspect of the app is the “Live Chat” function. Each Healthline Ambassador will be hosting chats in the coming weeks. Save the date—I’ll be hosting a live chat Monday, June 3 about dating, relationships and marriage with IBD. I’m thrilled to have the opportunity to share my personal insight on this subject matter with you and lead the discussion. It’s my hope my words and patient journey will comfort you and give you hope as you navigate life with IBD.

This free app is brand new and was just launched this month. You can download it onto Apple and Android devices by searching for “IBD Healthline”. As patients we are up against so many unknowns, this app is a great constant to have as you deal with the feel-good days and the not so good days. I look forward to connecting with you all!

You can access the free IBD Healthline app here: https://go.onelink.me/LOC7/6dae5800.