Grief and inflammatory bowel disease. They don’t mix well. I can still remember getting a phone call in September 2012 that my grandma had been hospitalized, that night…I was in the ER, doubled over in pain.
When those close to me are in harms way, I have a difficult time compartmentalizing my stress and worry and not allowing it to impact my Crohn’s disease.
On December 22, a day before I was supposed to see my Grandma and days before Christmas…she passed away. I wasn’t able to say goodbye in person, but my mom put me on speaker phone and I was able to tell her how much I loved her and that it was “ok” to go to heaven. I told her to be my son’s guardian angel and to always give us signs that she’s with us. Through lots of tears, I told her what an incredible grandmother she was and what she meant to me. Minutes later, after my call, she died.
It pains me to write and to say those dreadful words. 
I have never been able to handle the thought of life without her. It’s overwhelming not to have my grandma here to talk with all the time, visit, share the holidays with and I’m heartbroken that she’ll never get to see Reid grow up. I’m also scared about dealing with this major loss and having it throw me into a tailspin. The last thing she would ever want, is for me to be sick. Each hospitalization, each flare, each setback, always hurt her heart. She hated to hear of any complications or issues. So, I know I need to be strong and reign this in…in her honor.
What can we do in times of extreme grief when we live with a disease that tends to ignite in a flare when stress or emotions are out of whack? What can do we do find calmness when all we want to do is scream to the heavens in anguish? 
What can we do when we know we have to go on and be healthy for our families, but struggle to manage our IBD—even with a combination of strong medications?
I’m writing this for both you—and for me (to be quite honest). I don’t have all the answers, but since being diagnosed in July 2005, I’ve experienced my fair share of heartbreak and stress. Here are five tips to take to heart when you’re going through something overwhelming.
- Be proactive. Sure, many of life’s hardships come without notice…but, that’s not always the case. My grandmother was diagnosed with lung cancer in September and was told she had a few months to live. I knew this was the inevitable, but that doesn’t make it any easier. Each visit and each moment we shared together these last few months, helped me come to terms with what was to come. I’ve had good days and bad…emotions are funny like that. Something will hit you—and you’ll cry from a memory and then other times you’ll laugh at something you recall. Hold on tight to the good times and the good memories.
- Deep breathing, meditation, warm showers. Exercise. You need to shut it off every day. Whether it’s for a minute or an hour. Take time to clear your mind—think of nothing…just focus on your breathing. This will do wonders for you. When I feel my symptoms start to kick in, I constantly remind myself to take deep breaths in and out, it helps so much. Go for a walk, go for a run, shoot hoops—do whatever it takes to release that negative energy and pain.
- Communicate with your support network. One of the worst things we can do is bottle up our emotions and deal with the pain internally. If you need to cry, cry. If you need a shoulder to cry on, hug those close to you. If you need to snuggle your dog or your baby longer, do it. You are not in this alone. We’ve all lost someone close to us. We all know how painful it is to experience the death of a loved one. Share your memories, make your loved one’s memory eternal.
- Think about what your loved one would want. Chances are, this person knew firsthand what a struggle life with IBD is. The last thing they would want is for you to be in pain, in the hospital or needing medical intervention. Be strong for them. Think about what they would tell you if you could hear their words as they watch over you. Find comfort knowing that they are with you, just in a different way. Look for the signs they may give you. My college friends recently came to town. One of the signs my friend gets from her mom are white feathers. She had just told us earlier that day. That night, at dinner, we sat down…what was over our shoulder, right next to our table…a Christmas tree made out of white feathers. We knew she was with us. Hold those signs close to your heart.
- If you sense a flare is brewing, don’t put it on the backburner. Earlier in my patient journey I would wait until the last possible moment to go to the hospital. This is not smart. Nip that shit in the bud. You know your body, don’t try and be a super hero. The longer you wait to seek help, the worse it’s going to get. Recognize when handling your symptoms by laying on a couch, eating a liquid diet and taking pain pills isn’t going to cut it. You don’t need to be a martyr.
Handling grief is never easy, coupled with IBD it can be unbearable at times. Take time for you. Do what you need to do to heal and find comfort in your loved ones’ memories.
When I visited my GI for a routine appointment last week, she told me those with IBD who have surgery oftentimes have an “issue” called 
This medication is typically a cholesterol medication, but can be used by Crohn’s patients as a bile acid sequestrant. By taking one pill prior to eating each meal, it helps bind bile acids in the intestines and can prevent the need to go make a mad dash for the bathroom immediately after eating.
I wasn’t thrilled to add another pill to my patient repertoire and daily regimen (it’s a horse pill!), but this has the ability to be a game-changer.
We tried new medications, but after eight months of no change in my small bowel, my gastroenterologist thought it was time to say goodbye to the diseased portion of my intestines. I remember the phone call from her just saying “I’m going to give this to you bluntly, you need to get them out.” At first, I was shocked, then angry that my body was failing me. I brought my husband to my surgery consultation, and I’ll never forget the look on his face as the surgeon was asking me very detailed symptom questions and I was answering them honestly. It was a look as if I had by lying to him for years. Even my husband, the person I spend every waking hour with, have been with for almost six years and since I was diagnosed, didn’t fully understand how bad my disease had gotten in the last three years.
As a mom and a wife, I questioned how my family would make do without me… But as surgery drew closer and I was in so much pain that I could only eat liquids and was basically confined to the fetal position, I knew it was time.
Getting surgery has changed my life in just 12 weeks. I can’t even imagine how much it’s going to change my life in the next year or two. I know the statistics aren’t in my favor, but until then I will totally be living my best life with a foot less of intestine and a bigger smile on my face!
She’s not your typical patient advocate. She’s an author who uses her sense of humor to not only inspire, but also make you laugh. She says things many of us think, but won’t say. Her most recent piece of work, “
That gives you an idea of what an incredible resource this book is for women in the chronic illness community. Kathleen’s ability to share her experiences and speak to others to make a difference, inspires me to be strong in my patient journey. Though we’ve never met in person, we’ve been “friends” on Twitter, Facebook and Instagram for years. I had the chance to interview her about her latest book. Here’s what she had to say:
People seem to enjoy the humour spattered throughout and find it to be informative and inclusive which is what I’d hoped for! This time round has been nerve wracking again so i try to only dip in and out of reading reviews for the sake of my own sanity/ego!”
Kathleen is dedicated to helping others feel less alone and afraid in their fight with chronic illness. As someone who’s battled Crohn’s more than 12 years, I can tell you firsthand her words empower me to be strong. I constantly find myself nodding along while I’m reading and even laughing out loud. You can follow Kathleen on Twitter and Instagram @kathfantastic.
Yes, we know that Pumpkin Spice lattes or those peanut M&M’s may not be the best decisions—but every now and then we want to live a little and take a risk. Just because coffee, nuts or popcorn caused pain one time—doesn’t mean that’s always going to be the case. In the end, if what we eat and drink causes us pain, we’ll be the one paying the price, not you. Please refrain from staring at us and questioning every time we put food in our mouths. We get it. No need to question or reprimand us. There’s already an ongoing inner dialogue 24/7 about every little decision we make and how it’s going to make us feel, trust me.
Understand that when you make plans with someone who battles IBD, the way we feel can change up to the minute we’re supposed to meet. While I know that can be aggravating, you must be patient and think about what you would do if you had stabbing pains in your abdomen and couldn’t stand straight up as you rush to the bathroom. More often than not, rather then canceling we put a smile on and pretend to feel well. So, the times we cancel—I can guarantee you, it’s a legit excuse and doesn’t make us happy either. I’ve had moments where I was all excited to go out with my husband and meet friends and he would see me walking around putting my make up on with my pants unbuttoned, because I was in so much pain and he had to tell me—we’re not going.
The primary goals of surgery for Crohn’s disease are to conserve as much bowel as possible, alleviate complications, and to help the patient achieve the best possible quality of life. Sure, you may go into surgical remission or be given a “fresh start,” but that disease will always be a part of you. When I had my bowel resection surgery in August 2015, they removed 18 inches of my small intestine—a decade of disease was taken from body. Of course, as I healed, I felt better and still feel a lot better nowadays, then I did prior to the surgery. Regardless, I live with Crohn’s every day and those symptoms are still present quite often. About 23-45 percent of people with ulcerative colitis and up to 75 percent of people with Crohn’s disease will require surgery. As I type this, I have stabbing pains in my stomach. I felt completely fine when I started writing this.
Normally when we hear those commercials, if they don’t pertain to us, we may kind of laugh and wonder who in their right mind would take a medication with all those risks. For those of us with IBD, we oftentimes don’t have a choice. It’s a high risk with a high reward. Quality of life has to come first. I know before I got pregnant with my son, there were multiple occasions where friends would question my decision to be on Humira. Once you are on a biologic and your disease is this severe, you don’t have a whole lot of options. Don’t you think the risk of new and worsening heart failure and being immune suppressed is already a worry we deal with as it is?
Sadly, the people who you think you are closest to often seem to disappear when you’re in the hospital. Rather than focusing on getting better, your mind may race and you may feel hurt that so and so hasn’t even called, texted or visited—even though you know they saw your post on social media about your most recent hospital stay. If you’re questioning whether you are going to bother the person or if you think it’s not your place to reach out—please change your mindset. It’s the people who reach out when you’re at your lowest point that you realize are worth your time and energy. IBD is isolating enough as it is, please be a good friend and show us some love when we’re going through a flare. If you were hospitalized, would you want radio silence from every person who matters to you?
I apologize if you feel that way, but I hope it has the opposite impact. I hope it brings you clarity and that it made a light bulb go off so that you know how to navigate your friendships and relationships with those who battle IBD. This week is a time to bring awareness about Crohn’s and ulcerative colitis, it’s a time for these diseases to be in the spotlight. This week, and all that follows, please be gentle with your words and be the type of support you’d want in return.
Lilly Stairs, a fellow IBD warrior, is the head of Patient Advocacy at 
In the past three years, Brandon has been put under general anesthesia 20 times and undergone eight surgeries related to perianal abscesses, fistulas and fissures. Despite getting an ostomy and taking Remicade and Imuran, nothing seemed to be helping heal the fistulas. In 2016, he decided to take matters into his own hands and research options across the globe.
As a patient you may hear clinical trials are costly, while oftentimes they are no cost to the participant. Since Brandon chose to receive his care in Europe, he was responsible for everything out of pocket, but this is typically not the case. Some may say patients have a negative experience, when in all actuality, the majority of volunteers, would sign up again in a heartbeat. When you’re part of a clinical trial, you are managed much more closely than when you’re receiving typical care. For those who feel they’ve exhausted all options and have nowhere to turn, clinical trials offer hope and answers. If you’re not responding well to treatment, clinical trials enable you to give something else a shot. And the best part of all, clinical trials allow us as patients to contribute to research and get closer to a cure.
Interested in getting started? You want to determine what kind of trial you want. From types of studies, to treatment methods, to trial phases, there are a multitude of components that need to be taken into consideration. Next, you need to make sure you qualify for the study. For instance, if the study is looking for people who have never tried a biologic and you have been on Humira for years, that particular study wouldn’t be a good fit for you. Clara Health holds your proverbial hand throughout the whole process, whether it’s communicating with your physician or touching base with researchers. They have a 
The relentless and all too familiar pain will take my breath away. I’ll call my husband, frantic, scared and emotional. My mind will race. This can’t happen. I can’t leave my baby. I can’t walk out this door doubled over in pain and not know when I’m going to be back home. This flare up will be worse than any I’ve encountered in the past. This time it’s not just about me anymore. It’s about him.
When you’re hospitalized, wearing a gown, attached to an IV pole and looking less than stellar…how do you pretend? How do you protect your little ones from the unknown? This isn’t the mommy they know and love. Kids are more intuitive than we give them credit for.
As much as we want to protect our loved ones from knowing how deep our pain lies, sharing and allowing them to be a part of our patient journey is important. It’s a big part of who we are and God forbid someday they too inherit the disease, we have to set an example that it’s nothing to be ashamed of and that it doesn’t have to rob you of living a beautiful life.
Each day, about 22 people die waiting for the phone to ring. That’s about one person an hour.
“What we do with any donor—no matter what—is assess the function of every single organ. So, for instance if the kidney, lung or liver function isn’t up to par due to long-term disease process or from long-term side effects from medications, the organ will not be transplanted. The last thing we want to do is transplant an organ and have the recipient develop a disease from a transplanted organ,” said Dr. Marklin.
As someone who’s battled Crohn’s disease for more than 12 years, and as someone who’s witnessed firsthand the incredible ripple effect created by organ donation within my own family—I can’t reiterate enough, how imperative it is to be a donor.
Yoga has taught me how to accept my disease and treat my body with compassion. As I started to progress through the physical poses, I realized how strong my body really was. I formed muscle and gained energy I never knew I had. All of these changes ma
Goodbye anxiety and stress! 
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