Irritable Bowel Syndrome (IBS)

Did you click to read this post because I’m in my underwear? I did that on purpose. I did it because most people want to look away when they hear about ostomies. Ostomies make people uncomfortable. In order to help you not feel bad, let me tell you what I used to think about ostomies: I thought they were gross. I thought anyone who had one probably smelled bad and was dirty and their body would look disgusting. I thought I’d rather die than have an ostomy… until I needed one myself. I was still in college when I found out I had to have my entire large intestine and rectum removed or I would die. I have Crohn’s disease, and I’d gone to the emergency department because I hadn’t been doing well and needed immediate medical attention. I didn’t go in expecting they would tell me I needed surgery, but after being admitted, that’s what happened a few days later. It all happened so fast that I didn’t have much time to process what was happening to me. One thing I did focus on was that I would wake up with a part of my small intestine sticking out of my stomach and would need to wear a bag taped around it so that it could collect my stool in it. I was going to be pooping in a bag. There are different kinds of ostomies. Most people get confused and call all of them “colostomies” because that’s the kind they’re familiar with. I had an ileostomy, which meant my ileum (the last portion of the small intestine) was sticking out of a surgically created opening in my abdomen. The part of the intestine you can see sticking out of your body is called a stoma. Because people with ostomies can’t control the things moving through their digestive system, they become incontinent and need to wear a bag around the stoma to collect their waste. I had a bag of sh*t on my tummy… Having that operation wrecked me mentally. I didn’t even look at my ostomy until a nurse forced me to when it was time for me to learn how to change the bag. I hated this life. I thought, Why me? I don’t know what I did wrong to deserve this. I quickly became depressed. I felt ugly, disfigured and like no one would love me like this. My thoughts became so irrational I convinced myself that all my friends would hate me, that I was going to be alone forever and that I would never be a valued and loved person. My self-esteem went lower and lower until there was nowhere to go. I hated myself. I was in a relationship at the time, but it was a relationship that wasn’t good for me and had been making me unhappy for a long time. Instead of leaving like I knew I should, I worked hard to keep the relationship because I figured no one else would ever want to be with me now that I had a body like this. I let someone treat be terribly just because I thought this was all there was for a sick, disfigured, ugly, smelly girl with a secret under her shirt. When it came to having sex, I was terribly anxious. I couldn’t focus on anything else but the bag, and I cringed and recoiled at the feeling of touch on my body. I felt bad about myself because the world taught me to. World Ostomy Day is a day to raise awareness about people living with ostomies. I’m writing this story because World Ostomy Day exists. It exists because it needs to, because people feel how I used to feel about ostomies. Gross. Dirty. Ugly. Smelly. Disgusting. Those are some of the misconceptions people have about ostomies. People want to look away and act like they don’t exist, which makes a person who has an ostomy feel like they’re less of a person just because they needed this life-saving surgery. My ostomy was only temporary, so I no longer have it; I currently live with a J-pouch. I did adjust to managing the ostomy pretty quickly, but I never did learn to accept it. It breaks my heart knowing others might feel as bad about themselves as I did when I had my ostomy. I bet if we lived in a world where ostomies didn’t come with such a negative stigma, fewer people would feel that way. My name is Sara, and I’m not less of a person because I have Crohn’s disease. I’m not ugly now, and I wasn’t ugly when I had my ostomy. Every single thing about me now is exactly the same as it was back then except where my body empties its waste. I have many friends who have Crohn’s disease or ulcerative colitis who have ostomies and do great work to raise awareness. They have to take pictures in their underwear, flexing their muscles under bright lights or doing amazing things to get people to look and then read what they have to say. Taking those pictures is a way of showing others with ostomies that they can still feel good about themselves and live a full life, but in another way it’s clickbait to try and get people to actually read and understand. The only time positive media about ostomies goes viral is when someone posts a picture like that. The truth about pooping in a bag? Well, it’s a weird thing not to use your butt to go to the bathroom. It’s something I never really thought about because that’s the way it had always been. When I had my surgery and poop was just filling my bag, I sort of missed going to the bathroom how I used to, as weird as that sounds. It’s weird not to feel the urge to go to the bathroom anymore. The truth is, having ostomy surgery is a learning process, and acceptance takes time and practice. You wouldn’t believe how many different types of bags, powders, adhesives and other supplies exist. Figuring out how to dress yourself, what to eat and what products you like takes time. The truth about pooping in a bag is that it can save lives. The truth is that people with ostomies don’t smell any worse than people without. The truth is that ostomies are not just for elderly people but people of all ages. The truth is you can do all sorts of things with an ostomy like go swimming, participate in sports and fitness and lead a really fun and active life. People who have ostomies all had serious medical conditions or injuries they didn’t choose, and surgery became an option for a better life, or in some cases to save a life. Remember that. Don’t judge people who have had to go through so much and are dealing with it because they have to. Follow this journey on Inflamed and Untamed.

I “met” Amber Tresca, founder of About IBD, on Twitter a few years ago — thanks to the magic of hashtags. We were both diagnosed with ulcerative colitis (UC) as teenagers, and Amber had j-pouch surgery 10 years after her diagnosis. Amber is one of the most active voices on social media when it comes to raising awareness for life with UC. Her “About IBD” podcast is one of my favorite go-tos when it comes to hearing stories, gathering knowledge and feeling more connected. UC is a type of inflammatory bowel disease (IBD) that causes irritation, inflammation and ulcers in the large intestine. It is a chronic condition, which currently has no cure. I was grateful to chat with Amber face to face (over Zoom) about all things UC, particularly as they relate to your relationship with your gastroenterologist (GI). If you read my conversation with Dr. Rajeev Jain, he provided a helpful picture of what a GI wants to accomplish with their patients: a two-way, trusting, collaborative relationship. Amber shares the same sentiment with her own feedback on what the future of treatment will hopefully look like. We also talk about what’s needed in a GI’s office and how those living with UC can be greater self-advocates. Here are her thoughts on… …peoples’ biggest fears after an UC diagnosis. Many of us haven’t actually heard of UC before. So that diagnosis is the first time that you’re hearing these words. Maybe you’ve heard “colitis,” but colitis can mean a completely different thing. And I think in a lot of cases, it’s not made clear to people right away that the disease is chronic in nature. That’s another thing that might come as a bit of a surprise, because colitis symptoms can sometimes appear to be temporary. All colitis is, unfortunately, forever. So I think what follows is most people think about the digestive symptoms that they’re experiencing. The next thing is that they wonder if they’re ever going to need surgery. A lot of people are concerned in the beginning that they might actually need a permanent ileostomy, which of course is not true for the majority of patients. …self-advocacy. When you’re living with a chronic illness, I think it’s important to learn as much as you can. And for some people, their doctor says that the patient is more often the expert in their disease than the healthcare providers. But everyone is going to have their own tolerance for learning about IBD; it might depend a lot upon the severity of their disease. Some people do really well from the very beginning, after that first flare. They might not feel that they need to spend a lot of time doing outside research, because their disease is really well-managed, and that’s fantastic. But I think it’s always a good idea to spend a little bit of time doing research. Everyone’s disease is individualized, so ask your healthcare team for recommendations on where to learn more about IBD so you have good quality, specific-to-you information. …what’s missing in GI appointments. IBD is so complicated. For those of us who have had severe disease, we often spend all of our time dealing with the signs and the symptoms that are super urgent . We don’t necessarily get around to all of those other things. IBD affects the whole person, and that is something to think about when you come in for your regular six-month or yearly checkup, when the urgency is lower. That’s the time when you need to be thinking about things like sleep, sex, mental health, family planning, and also things like how IBD is affecting you financially, which often gets left behind in the discussion. We think, Did I reach my deductible? What is covered now? It’s a constant catchup game. I’m fortunate in that, a lot of times, my providers will tell me how much something will cost. But that’s not always the case for me or for anyone else. Doctors can prescribe medications all they want, but I can’t pay for it sometimes. I think that’s something that we need to think about more, and gastroenterologists need to think about it more and ask their patients how they’re doing with the costs. …the importance of transparency. If you had asked me when I was first diagnosed, open dialogue would have meant a totally different thing than it does now, as a 40-year-old and mother of two. For me, open dialogue means everything is on the table. UC is a personal disease. We’re talking about things that nobody wants to talk about. And we have to really trust our care team in order to open up to them and have that two-way conversation. I think GIs need to ask the right questions directly too. Many people living with IBD have told me that their doctors never ask them about their sleep patterns or if they lose control of their bowels, which is a really important question! I was working with a group and talking about surveying patients. One of the questions said something about experiencing leakage. This happens to IBD patients, and they don’t get asked about it. We’ve all had the experience of going into the GI’s office and hearing medical jargon, and sometimes it would be better if things were explained more plainly. Of course, I think it’s important to know the name of the drug you’re on or the exact name of your condition. But it’s also important to have that explained in very plain language. Doctors have to be comfortable with a patient saying, I don’t know what that means; you need to back up and explain it a little bit more. I think healthcare providers sometimes need a little more intuition on their part. …speaking up if you disagree with your treatment. Patients may not recognize that they have the ability and right to say no. We have something now called “shared decision-making,” which we all need with our healthcare team. The GI is the expert in the disease, but the patient is the expert in their disease and their life. It can feel daunting to disagree, but what good is it if you get a prescription that you never plan on filling? Or if you get an order for a test that you can’t afford or don’t want to get done? The doctor needs to know why you don’t want to take a particular drug or why you aren’t interested in changing your diet. Unfortunately, this does put some of the onus on the patient to speak up, but it’s important to remember that your doctor has seen and heard it all. You won’t be the first patient to tell them, “Look, I’m never taking prednisone again.” So you just need to say it and get it out there. Physicians need to also recognize when their patients are displaying reluctance to follow the care plan. Instead of treating it like non-compliance, they should get to the heart of why they feel reluctant. I believe that, in most cases, you can find a way to work together still. Whatever the situation is, you can usually work it out; there’s usually an alternative. …the struggle to find the right GI. One of the most frequently asked questions in patient groups is, Does anybody know a good doctor in XYZ state? I’ve also talked to providers about this; I think sometimes the issue is the complication of IBD. The amount of information and research that’s coming out now has just exploded, which is why we now have more healthcare providers that pretty much specialize just in IBD. I think the other side of it is just communication. Patients are regular people; nobody pulls us aside and says, You have a chronic condition, and here’s how you manage a chronic illness. Sometimes it’s also difficult to know who to go to for a specific issue. Who do I call about this? Is it my gastro? Is this my urologist? Is it my OB/GYN? Sometimes we get bounced around with our symptoms. In that case, I think our physicians are looking to us to be vocal about what our wants and needs are, and it’s not always easy to do that. We have this gap, and we need to find a bridge across this gap. That bridge is going to be different for every patient-provider pair. But at the very heart of it, it boils down to communication. …the future of UC treatment. The biggest thing would be personalized medicine. So many patients bounce from drug to drug. Maybe the first one doesn’t work, so you go on something in a different class that has a completely different mechanism of action. Why is that? Why did my friend get on a medication that has worked for a very long time, but I start on that same medication, and it doesn’t work for me? What I want is for us to understand why these drugs work, then understand why they work for certain patients and not others. Then, when you leave the GI’s office, the plan works because this class of drugs has the best chance of working for your disease. We are no longer throwing spaghetti at the wall. That’s what I want, and we are getting there. I think most patients don’t realize how many clinical trials go unfilled because they can’t find enough patients to participate. But we’re getting the funding filled, research done and attention that’s deserved. Research is also increasing in all kinds of demographics, not only in the United States, but also across the world. So the future is bright for UC and IBD treatment. Note: This interview was edited for clarity and length. Learn more here.

Knowing I’d be hitting double digits since my diagnosis with Crohn’s disease has caused me to spend a lot of time reflecting over the past few months.  After spending so many years focused on getting to a future that was bright and disease-free, it’s a little weird to look back at the journey. Along the way, I’ve experienced fear, sadness, anger and pain, along with determination, personal growth and a constantly fluctuating battle between finding peace with my diagnosis and a nagging desire to be “normal” (whatever that is). Now that a decade has come to a close on managing this disease, I’ve found that these are the top five things I’ve learned along the way: 1. I can reach personal goals and live successfully with Crohn’s disease. First and foremost, I’ve learned that I truly can take on new challenges and accomplish goals while managing this disease. But, it hasn’t always gone how I’d hoped it would. To make things happen, I needed to completely change my tactics on how I defined and approached goals. Two major themes for success have played out: I’ve needed to build in very flexible expectations for myself, and I must focus on gradual progress as a measure of success if I want to keep my spirits up along the way. I’ve been able to hike and travel again – a personal goal I set from the start – but, I had to learn to love smaller hikes (and sometimes just simple walks around the block) and domestic travel at times when I’m not well. I’ve needed to accept “two steps forward, one step back” as progress made, and I’ve needed to remind myself that breaks in progress are not failures as long as I know that I’ll try again as soon as I’m able. As a result of this approach to goal-setting over the past decade, I was able to get married, have children, go to grad school, develop a love of public speaking and advocacy, and am now embarking on a new career in healthcare. 2. I cannot control this disease. Try as I might – and oh, how I’ve tried – I’m not in control of this disease. I like to make contingency plans for the management of symptoms of all sorts, but as soon as I think that things are figured out, some new manifestation of symptoms comes along which blows my contingency plan to smithereens. At first, this was the single hardest thing for my type-A brain to accept about Crohn’s. I had to be in control. Well, I’m not. I’m smart, savvy and capable. At times, I feel like the MacGyver of managing symptoms. But I’m not in total control of this disease. I can’t decided how and when symptoms appear. I’m ever-ready for them, but I don’t have a Crohn’s disease crystal ball. Accepting this fact has been huge in how I mentally manage my journey with this disease. As corny as it may sound, what I am in control of is how I accept this disease… which is and will always be a work in progress. I’d also be remiss if I didn’t mention that I have control over how I work with my clinician to manage this disease. Realizing that I can (and should!) partner with my doctor to have some measure of control over how we make treatment decisions has been invaluable as we continue to review treatment approaches together to set and reach goals. While the disease itself may not be totally controllable, smart disease management may help coax the disease to remission. Optimizing my doctor’s ability to manage the disease through treatment requires my participation in treatment decisions and external lifestyle factors that may at least try to tame the beast. 3.  Remission isn’t what I expected. I needed a blood test, scope and MRI to confirm that I was in remission before I would believe it. Even afterwards, I was mad in some ways. Why wasn’t I feeling as good as I had when I was 20 and running around my college campus, before the disease first appeared? I really had to talk myself through the way that age, chronic inflammation, depleted nutrition, the mental anguish of disease and the resulting scar tissue would change my body forever. Remission has never been what I expected. It’s even more confusing for those around me. If I’m in remission, why am I still tired from time to time? If I’m in remission, why are some days… off? For anyone else feeling let down by remission, I’m with you. The personal journey to accept, appreciate, manage and maximize remission has been just as involved in some ways as the journey to manage active disease. 4.  This life-long experience is best when shared with others who “get it.” For years, I had a handful of friends who really knew what I was dealing with. There were many aspects of the disease I mentioned to no one. Managing disease meant hours of solitude in a bed with my best friend, Netflix. When I mention shows I’ve seen over the years, I’m occasionally told “wow, you watch a lot of TV,” which stings as a little reminder that so much of this battle is had alone. Over the past few years, though, my circle of friends with Crohn’s has grown to a satisfying group that brings such joy and humor to many aspects of day-to-day life with the disease. When I’m let down, scared or depleted, they lift me up. And when I can be an ear or offer some advice, some of my experience seems worth it. 5.  Overcoming disease-related challenges has forever changed who I am for the better. This last point has been my most recently appreciated and hard-fought lesson with the disease. For years, friends have commented that I manage the disease well, and others who know nothing of my health have mentioned that I’m an “old soul” or that I seem to have good “life perspective.” While this may be true in some ways, I’ve fought the notion that any aspect of this disease could have possibly brought a positive change in me, as if I would have been a different person if I didn’t have the disease… but it’s true. A part of me still hates saying this because I do not want to have this disease. If a magic pill would make me disease-free forever tomorrow, I would take it. Hands down. I hate the thought of this illness sidelining me from taking care of my kids, getting to work and being with family and friends. But I look back on my ability to be kind and patient with myself. I think about the fact that I am incredibly open to admitting that I know nothing of what others challenge every day. I think about the way that life obstacles don’t seem insurmountable anymore. And sure, some of that perspective will come with age, but a lot of it has come as a result of the fact that I had to find perspective to live and thrive as a result of this disease. I had no choice. I’ve learned a level of strength I never knew I had within myself. I’ve learned humility. I’ve learned to be humble. I’ve learned to laugh at myself. I’ve learned to accept what I cannot control. This disease has inspired me to give more to the world than I take from it. Simply put. Because as a result of this disease I know what it feels like when it seems like the world has dealt me a bad hand. That perspective has given back to my life in a positive way that no other lesson or life experience possibly could. Cheers to the next 10 years and the lessons that await me!

When I hear self-care, I feel a pang of guilt because I’m not doing it as often as I “should.” It’s ironic, being hard on myself is the opposite of self-care! So instead of a list of “shoulds” to self-care, I’ll share what’s worked for me, but first, let’s start with a quick exercise in self-compassion. True self-care starts with kindness towards yourself. Self-compassion expert Kristin Neff, Ph.D. suggests treating yourself like a good friend. For example, if a friend is feeling down, you might share a quality about them you love. Think of one thing you love about yourself and fill in this blank “I am____.” Even if you can’t think of something right now, please know: You are strong. Living with Inflammatory Bowel Disease (IBD) or any chronic illness takes immense resilience. Even taking the time to read this is a service to yourself. You are prioritizing your health and well-being. I broke down self-care by life phases to show how my self-care has evolved with my Ulcerative Colitis (UC). These themes may be helpful wherever you or your loved one are in your IBD journey, including childhood if you are a parent caregiver. Get creative — writing, photography, drawing, painting, Childhood When I was hospitalized I began journaling. After being released, I chose a large black book with blank pages I could fill with a mix of fiction and reality. I’d bring it on car trips to the Cleveland Clinic, drawing silly doodles to make my cousin laugh or jotting down ideas for stories. That book would also be with me in bed — the perfect low-energy activity for flare ups. Teens/emerging adulthood I began developing my own photographs, which was incredibly relaxing. The darkroom was such a still, sacred space. I continued creative writing and started to write poetry late at night when my sleepiness mixed with my subconscious. And there plain as day, the pain of my UC flare ups bled in between the lines. It wasn’t just cathartic, but writing also helped me reframe how I thought about my illness. Adulthood I’m sadly the least creative I’ve been in awhile, and I plan to prioritize this now realizing how it’s been such a big part of my self-care in the past. Get physical Childhood I started ballet shortly after tennis but loved tennis much more. It was a release. One day while my mom was rushing me from ballet to tennis, I burst into tears. She parked the car and asked me if I wanted to stop ballet. I withdrew before my recital, and the head of the dance company shouted to my mother how I’d never stick to anything if she let me quit. It’s ok to stop doing activities that aren’t serving your physical or emotional health. Listen to your body. Teens/emerging adulthood I stopped tennis senior year. My schedule was too full, so I felt no guilt about clearing my plate on that front. In college I took women’s self-defense and meditation — not the most physically-demanding activities. The latter ended up being the emotional restoration I needed. (Fun fact, my mantra was “So Ham,” which apparently translates to something like, “I am that.”) Adulthood I still play tennis for fun, but admittedly have slacked on my exercise regimen. My daily goal is to at least stretch. When I’m on my yoga mat, I feel my stomach rise and fall. It’s a mini-meditative moment. Find faith and/or meaningful practices Childhood Going to weekly mass made me feel safe — the intensity UC was all okay because it was in G-d’s hands, and it would all work out. I was surrounded by a warm blanket of His love wherever I went. Teens/emerging adulthood When I was old enough to parse aspects of organized religion I disagreed with, throwing myself into my new love for biology kept me going. Maybe I would become a doctor and help children like myself who have to deal with chronic illness. Volunteering at the children’s hospital was rewarding, though I realized I didn’t have enough energy to be in an emotionally and physically demanding setting for work. Instead I started charity concerts and delved into social science. It was fascinating to learn the nature/nurture elements that make each of us who we are. Studying social inequalities in health, alongside science communications courses, set me on a path to use the media to inform and support people living with UC and other chronic illnesses. Finding ways to align your passion with your work is self-care to me. Adulthood In my work I get to collaborate with health nonprofits and the amazing medical experts and patient advocates who push healthcare forward. Boundaries are important when you are so passionate about your work. Ordering your values (my top 3 are Health, Love, Family) helps me prioritize weekly activities when there feels like there isn’t enough time. I started a private group for Women+ With IBD . I’d love to continue the conversation there!

“You look great!” Um, thanks. I have been in the hospital a number of times before due to Crohn’s disease flare-ups over the past 18 years. Sometimes I was so sick, I was unable to walk due to pain or weakness, or losing blood, but never have I had to face the surgeon’s knife. That would never happen to me! No way! That only happens to other people who are really sick! I’ll never get to that point! I thought. Until I did. The end of 2014 I was doing a show, and experienced terrific pain during a performance. I thought I may have pulled a muscle, and I thought the pain would go, but it only got worse. I ended up in the emergency room; lo and behold, it was Crohn’s. Even after 18 years, it always took me by surprise when I would have a flare. Apparently there was a small hole in my large intestine that the doctors managed to heal with treatment in the hospital for two weeks, avoiding surgery. I left the hospital in November 2014, and started to feel better! So, at the end of the year, I spent some time in the States and came back to Australia beginning of 2015 — carrying on with work and life, all going well. Funny thing is, when you’re feeling well, you tend to forget you have Crohn’s. And this is where the danger lies, I believe. Because, when you have Crohn’s, even if you’re “feeling well,” that doesn’t necessarily mean you are. I was back in the hospital again in June 2015, booked in for another colonoscopy. As I was going in for the procedure, I bumped into my previous gastroenterologist. He said, “Hello Sylvia! How are you going?” I said, “Not too bad (why do us Aussies always under-play things?), I’m having a bit of a flare, so am going in for a colonoscopy.” He said, “OK! Well, you look great! A bit thin, but you look great!” I said, “Thanks.” A Crohn’s point. You can look fabulous, but can be feeling far from it. Please don’t judge a book by its cover, friends! I went in for the colonoscopy and my new specialist gave me the results: “Your intestines are so ruptured, we couldn’t even get the camera through, we don’t even know how you’re walking. We need to operate right away because this is potentially life threatening.” And there it began. I was one of those people who was apparently so sick, they needed to perform a resection surgery (removing a part of the large intestine). Which turned into two surgeries, which turned into three surgeries, removing all of my large intestine, with a temporary ileostomy — the dreaded bag. This, by the way, is not standard. Apparently a resection surgery, is a resection surgery. And that’s it. You’re in, you’re out, you go home. My first surgery, however, broke away in my body after a week of recovery. Truly horrific, and have never been in so much pain and have never felt so frightened in my life. The surgeons had to do an emergency second operation, removing the remainder of my large intestine, and that’s where I ended up with the ileostomy — the bag. Thankfully the ileostomy was only temporary. This sort of major surgical complication only ever happened to the surgeon once before. Also, during my six-week stay in the hospital (which was only meant to be two weeks max) there were further complications. In fact, medical students came around to have a look at me, as a study on “what can go wrong when operating on Crohn’s patients.” Great. They were, by the way, quite strapping doctors, so that was a highlight. I, however, wasn’t in my best form, to say the least. I was looking exactly as I was feeling. Crohn’s can be very tricky, in a number of ways. It can even fool the patient. You may look great! Doctors can even say you look great! You may think you’re feeling great! And that’s hard to monitor, because with chronic illness, you can become so accustomed to being run down, and experiencing pain on a regular basis, that your tolerance for pain is actually quite high compared to others not experiencing chronic illness. Thankfully now one year later, I am doing well. I’m on a new medication, Humira, which has helped put the disease into remission. And, I hope to continue to stay in remission. And, I know I will never let myself get to that point ever again. The moment there is a hint of anything, I am straight to the doctor. Sign up to follow more stories by people with Crohn’s. Sylvia before and after her surgery. So, my learning from all of this is — take this disease incredibly seriously. I don’t think I ever really did, not to the extent I should have. Being a “bit sick,” for me, was a norm. Until now. Please, friends with Crohn’s, and family members of those with Crohn’s, don’t judge the disease from how you may look or feel, even if you feel great! Monitor yourself consistently with doctors, specialists, talk about Crohn’s, go to support groups. Ask questions, share. This disease is a very real thing. And, it can take you completely off guard. Lord knows it did with me.