Treat yourself with grace. Every day is different. Some days you can be a superhero and some days you can’t get out of bed. Both are equally beautiful and important.
Inflammatory bowel disease (IBD) is a condition that causes chronic inflammation and ulceration in the digestive tract. There are two forms of IBD, including Crohn’s disease (CD) and ulcerative colitis (UC). These conditions are painful, debilitating, and incurable diseases that attack the digestive system. Crohn’s disease can present with inflammation anywhere along the digestive tract from mouth to bottom while ulcerative colitis causes inflammation in the large intestine (colon) and/or rectum. When CD and UC cannot be teased out, the diagnosis is considered to be indeterminate colitis. Symptoms of IBD may include abdominal pain, bloody diarrhea, rectal pain and bleeding, fever, and weight loss.
As of 2020, IBD affects more than three million Americans and approximately 10 million worldwide. IBD can present at any age but often afflicts young patients aged 15 to 35, with the incidence growing in children of various races and ethnicities.
The effects of IBD
IBD is not just a bathroom disease. In fact, there are many extraintestinal manifestations that come alongside the condition, including but not limited to, skin issues, joint-related disease and pain, eye inflammation, kidney stones, and liver issues among many others. IBD can also come with other diagnoses; some common ones include rheumatoid arthritis, ankylosing spondylitis, liver, kidney, and gallbladder issues in addition to asthma, migraines, and depression, and anxiety.
When left untreated or not sufficiently treated, complications may occur. In UC, toxic megacolon can lead to immediate hospitalization and removal of the colon (colectomy surgery). In CD, with uncontrolled inflammation, the intestine can narrow resulting in strictures and the intestine can also burrow holes and tracts into other organs and the skin, known as a fistula (if one) or fistulae (if multiple). In both CD and UC, if there is untreated/undertreated inflammation in the colon and rectum for 8-10+ years, patients are at risk of developing colorectal cancer (CRC). There is also a risk of small bowel cancer in patients with CD.
How do we treat IBD?
There are some differences in medications used to treat UC versus CD but overall the concept of treatment is similar. In UC, 5-ASA medications may be a first-line option whereas for CD, it is often recommended to move to immunosuppressive agents and/or biological therapies in early stages to prevent complications and surgery. There is also a role for dietary therapies and mental health counseling for patients living with IBD and their families/caregivers. Some major IBD centers will offer a dietitian and mental health practitioner to help improve outcomes for patients with well-rounded and personalized care for their IBD.
If medications do not work and/or if complications develop, patients are often referred to surgery. There are different options for surgery for those living with UC versus CD. Refractory UC can lead to a 2- or 3- step surgery, which removes the colon along with most of the rectum and fashions a j-shaped pouch of the small intestine to create an internal reservoir to hold stool. Refractory CD may involve colectomy surgery, resection of the bowel, fistula drainage/repair, and/or strictureplasty depending on the severity, location, and penetration of the disease. With CD, internal pouches are not common because CD can recur in the pouch; hence, external pouches called ostomies are used as a mainstay in CD surgery.
While UC and CD are progressive conditions that may worsen without treatment, in many cases, IBD can be effectively treated with the current arsenal of medications and surgeries available. Timely care is of utmost importance in preventing poor outcomes.
Getting Support for Living with IBD
IBDLyfe has emerged in order to provide support to patients and/or caregivers. To help them navigate their conditions in a way that reduces stress and anxiety to help improve outcomes. Join us today!
**It is always important to speak to your physician about medical advice and to your dietitian regarding dietary therapies available. If you are having thoughts of harming yourself and/or experiencing suicidal ideation, please discuss with a mental health counselor immediately.**
Living with an unidentified chronic health issue is like living in darkness; you can see enough to get by and do what you need to do, but you certainly do bump into a lot of obstacles. The unknown, inexplicable condition you are battling keeps you craving daylight, while hoping that you will finally be able to know why you were stumbling in the dark.
Daylight finally comes; in the form of a medical diagnosis. The emotional responses to this moment can vary from fear and grief to liberation and relief. Some people are terrified and saddened to know they have a tangible diagnosis, while others are ultimately grateful to have answers to their previously confounding misery struggles.
Lyfebulb IBD Ambassador Esther Mashouf falls into the latter group. When Lyfebulb Live chatted with Esther, she shared some of her story and offered sound advice on approaching the barrage of questions our minds ask when finally receiving that chronic illness diagnosis.
Diagnosed 16 years ago with Crohn’s disease, Esther believes that half the battle is won with the diagnosis. She says, “After all the testing to figure out what is wrong with your body, you can embark on the journey of making it right.” Emerging gratefully into daylight to understand her condition has compelled Esther to eat better and live healthier. Therefore, when finally receiving a diagnosis, Esther’s first nugget of advice is to give yourself space to breathe and feel what you feel.
I could not agree more. Whether we are the patient or the care partner, we are often surprised at our reactions to frightening news about our health. There is no wrong or right way to feel and, although that may sound obvious, we sometimes need to be reminded of this when our psyche tries to mess with us.
In the Live chat, Esther went on to offer other valuable advice about being newly diagnosed. She suggests:
- Ask your doctor if they would get a second opinion if they were you. Don’t be afraid. It’s only personal to you, not to the doctors. You are the one living with this illness, so don’t worry about offending the doctor with your questions. If you are not comfortable asking questions of that doctor, that is not a good sign.
- If you need surgery, ask questions about the surgery instead of delving into to medical websites. Instead, go directly to the source – your doctor or surgeon.
- Seek a support group. Even though what works for one does not necessarily work for all, you will find people who’ve been through this before, and it can be helpful knowing others who “get it.”
It is that support group aspect that brought Esther to Lyfebulb as an IBD Ambassador. And with IBDLyfe, incorporating that element of support is less effortful. Sometimes, what works for one can be something for you to learn about and reap similar benefits, not just medically, but also emotionally.Esther’s final advice was, in this humble care partner’s opinion, the most inspirational. She firmly states, “You can live a healthy life; it won’t be the end for you.”
When I was first diagnosed with Crohn’s disease, I remember hating myself. For so long, I was so angry at the world. I was angry because I couldn’t run anymore. I was angry because I was in pain. I was angry because I felt like I wasn’t capable of anything.
The stigma of disability is often composed of beliefs that people with disabilities are too sick to do anything, are not capable, and weak.
Years later I realized the only reason I hated myself and hated my disability was because society made me believe that having a disability was the worst thing that could have ever happened to me.
People would frequently tell me things like I should reconsider what I wanted to do with my life because of how my illness would impact me. I have been told that it was surprising I could even do what I have done in my life. I have been told that I would be in pain forever.
I have had doctors not believe in me. I have been blamed for my illness. I have been shamed for my weight, for not eating enough, for not trying hard enough, for being too tired, for eating too much “fast food” and an endless stream of hateful and hurtful words.
Sometimes even members of my own family would shame me and suggest I caused my own illness. I think that hurt the most.
But they could not have been any more wrong.
Living with a disability allowed me to see my black and white world in color for the very first time.
My disability gave me inspiration for my future career. It allowed me to realize what my true passions and dreams were. It allowed me to appreciate the smallest, tiniest things that no non-disabled person would ever be able to notice. It opened up the door for new hobbies. It empowered me to focus on my mental health. More than anything, it gave me a second chance at life.
I live for myself now.
I started painting which is weird because I used to only be able to draw little doodles on the bottom of my notebooks.
I do yoga when before I would over-exercise and tire out my body.
I found out about Trader Joe’s vegan chocolate chip oatmeal cookies with coconut (only after the very serious hunt to find snacks that were IBD friendly for me).
The air tastes better. Songs are not even songs anymore; they are seven different melodies and sounds happening at the same time and I can appreciate every bit of it. Every time I take a step without pain, it makes me feel like I am walking on clouds. The sun feels warmer.
I feel colorful.
Personally, my disability was the best thing that could have ever happened to me. It is difficult. It is painful. It is exhausting.
But it does not make me weaker than anybody else, less capable than anybody else, and I do the same things anybody else does, and I do it while I’m sick too.
At 25 years old, Katelyn Parme had just started a new job as an analyst. She was dating a guy with whom she saw a long future, and everything seemed to be falling in place. As a long term Crohn’s patient, she had seen major fluctuations in her health over the years, but with the help of the right medication cocktail, everything was going well. That was until about a month after she started that new job and new symptoms started popping up that looked and felt like a Crohn’s flare. Katelyn was losing her appetite and some weight, she was having dizzy spells and nausea, and after an appointment with her doctor, they both assumed it was her Crohn’s acting up…until she realized her period was late.
Katelyn took a home pregnancy test in a panic and the lines were clear as day; she was pregnant. Immediately she broke down, not only because of the surprise of this pregnancy but also because the night before, she had taken her Methotrexate injection. The world began to swirl.
Admittedly, Katelyn wasn’t 100% perfect when it came to taking her birth control because, much like many other women with IBD, she thought she couldn’t have children.
“I 100% thought that I was infertile. For some reason, having IBD, I had this weird thought in the back of my head that I would never have a child, and it was the most heartbreaking thing because my whole life, I wanted to be a mom.”
But here she was, unexpectedly pregnant, and taking a medication that is known to cause severe complications and birth defects. Methotrexate can cause Spina Bifida, loss of limbs, loss of fingers and toes, among many other potential complications that could result in long term disability. Katelyn discontinued the medication immediately.
At her first ultrasound, she found out that she was already 14 weeks pregnant, and her doctor made it clear to her how risky this pregnancy could be. While they could eventually confirm that her baby may have all its fingers and toes, they wouldn’t be able to assess its mental capacity until it was born. Her doctor made it very clear what the long-term implications of raising a severely disabled child may look like and mentioned that Katelyn may want to consider a medical abortion. But then something amazing happened. She saw her baby on ultrasound for the first time, kicking and punching furiously.
“If someone is punching that hard, clearly she wants to be here. Call it fate or a sign from God, whatever you want to call it. Maybe it’s mother’s instinct that was like ‘She’s ok, let’s do this. Don’t schedule an abortion.’”
At 16 weeks, there was another ultrasound that showed Katelyn’s baby indeed had all of her fingers, toes and limbs, which was a small victory for the growing family. Her doctors told her that they wouldn’t know for two full years if her baby would have any lingering mental disabilities. While Katelyn and her boyfriend were feeling excited about their new baby, they still felt the need to preface every conversation about her with a note about the uncertainty of her future. The extreme joy and fear lived side by side.
With the potential for complications in their daughter’s birth and Katelyn’s Crohn’s, the young couple decided to get married to solidify their ability to make medical decisions for each other. While their wedding wasn’t the big fancy wedding Katelyn had always dreamed about, the intimate ceremony was the right choice for them at the time, and it felt beautiful and magical.
After that 16-week appointment, Katelyn and her baby got regular check-ups and everything looked great, though she couldn’t help worrying; her body had let her down before.
“You start to feel so broken. You start to wonder whether my body can ever do anything right.”
With the guidance of her OB and GI, Katelyn planned her last Remicade treatment exactly 6 weeks before the expected due date of her daughter. However, when her baby’s growth began to slow, they decided to induce.
Despite all the risks associated with Methotrexate and extra difficulties due to Crohn’s, Katelyn was able to deliver a perfect baby less than 24 hours after induction.
“For all the things my body does wrong, it does know how to be pregnant and it does know how to have a baby.”
Now two and a half years later, Katelyn and her husband are parents to a healthy baby girl, who is growing and thriving, in spite of all the odds against them.
I am the mother of a 23-year-old with ulcerative colitis. Some could argue that I statistically had it coming since my mother lost her colon to ulcerative colitis at age 22 and my son’s father also lives with the disease. Beyond that, IBD is prevalent in other relatives on both sides of my children’s family. As one can plainly see, this illness was not new to me when my son was diagnosed at the tender age of 9 years old.
Unfortunately, familiarity and experience with a disease does not make one an expert when thrown into the caregiver role; emotions can run rampant even as we work hard to learn all we can to help our children. That is why my September 28th conversation with Grady Stewart was so rewarding – it provided me the feedback and validation I needed as a parent who still questions her past and present efficacy as a caregiver.
On Grady’s ambassador profile in Lyfebulb, you can learn a bit about his story and passionate involvement with the IBD community, but in the live chat I had with Grady, you can see the impressive young man he truly is. When I was thinking of what questions to ask Grady, I focused on my own concerns as a parent caring for my child. What follows is a sampling of the questions and points that touched home for me the most.
Since Grady was diagnosed as a freshman in college, he talked about how hard it was to suddenly be thrown back into the role of the child who needed his parents while he had already taken steps towards becoming an independent adult in the college world. He said he felt extremely isolated when he first learned of his diagnosis because he really did not know anything about UC. He felt vulnerable, adding, “It takes a lot of courage and bravery to be open in public about it … I don’t know that I was there in my journey.” So he was grateful for his ability to seek out parental support.
That led me to ask Grady which was more important to him – independence or support, given his age upon diagnosis. He definitely chose support, stating, “Support was the pathway to independence for me.”
As the parent, I was encouraged to hear that. Even though my son is now an adult, he has lived with this condition for almost as long as he has had memory, and I have worked hard to transition myself from a fully responsible parent and caregiver of a child with chronic illness to a far less responsible parent and support partner along my son’s journey. But I would be lying if I said it has been easy.
I asked Grady to discuss the most and the least helpful things his own parents had done for him and continue to do in regard to caregiving.
He noted the ongoing support of actually being there for appointments and treatments as a big plus. When Grady observed that “There is so much love in that act of a friend or caregiver coming with you for a [two- or three-hour treatment]”, it particularly hit home for me. I spent more hours than I care to count trying to entertain my son with movies, stories, or jokes while he sat through an infusion or prepared for an MRI or other more invasive test or procedure. I really needed to hear how important that support has been to Grady because our own sick children often do not have the wherewithal to thank us at those moments because they are under their own duress.
Regarding the least helpful thing his parents have done, Grady demonstrated such insight and compassion when he recognized that “Caregivers are very much going through the same wins and losses as the patient, in a different way, but it very much impacts them.” Still, he has been frustrated when they worry too much or are overly involved. He says they seem to have difficulty giving up control.
Well, there you have it, I thought to myself, realizing that I have certainly been just as guilty as Grady’s parents, which brings me full circle to my comment that becoming the less responsible parent and support partner is not easy. It is our own ongoing journey.
Grady and I summed up our visit with his advice to caregivers: Don’t forget to take care of yourself too.
At which point I was thrown back into memories of walking the treadmill at the gym in the children’s hospital in Miami back in 2012, while my son lay under full sedation after having finally lost his colon due to this pernicious illness. And I remembered how guilty I felt stepping out of the ICU for those moments just so I could clear my head and breathe full breaths. But Grady’s advice is spot on. If we are not good to ourselves, we can be no good to those who need us.
So continue soldiering on, my fellow caregivers. As Grady also pointed out, we are part of an ongoing partnership with the patients we hold dear. And according to this remarkable young man, we are definitely needed and appreciated.
Lyfebulb’s Live with Grady Stewart:
Written by Wendy Lyman
My son recently recovered from emergency surgery to repair a bowel obstruction resulting from J-pouch torsion. In simpler terms, his intestines were all twisted and it was a mess that required being opened up when laparoscopic attempts failed. This twisting was a situation that took time to develop, and I cannot help wondering if consistent communication with an IBD team as symptoms presented could have prevented this trauma for my son.
In fact, in the IBDLyfe discussion forum we have seen posts about the desire for IBD clinics, where a team of GI specialists, such as the physician, dietician, nurse/physician assistant, therapist, and perhaps even an exercise coach, come together to provide appropriate support and care for the unique needs of patients with IBD. I always say that timing is everything, and now there is the GITrak app, available for both Android and iPhone.
Lyfebulb Patient Entrepreneur David Schoen and his team have recently launched this app, and although GITrak is still in its infant stages, Schoen’s plan for a dream team of experts, similar to those mentioned above, is actively in progress.
Schoen explained his philosophy of the body being one ecosystem; many elements come together to make it work well and as intended. To that end, GITrak starts with the dietician, who builds a relationship with the user by learning about the individual’s lifestyle and finding a plan that works best. The next phase will be to sign the user up with the doctor, the therapist, and the physician’s assistant, who all work in tandem with the dietician to comprise the IBD team.
Schoen explained how most patients only see their GI for emergencies. The goal with GITrak is to create an environment of well care and to provide a team who checks in with the user and is accessible when the patient feels even a bit “off”. The team would have the user’s medical records and connect with the patient’s actual physicians. GITrak is presently accepted by a few major health insurance companies, and Schoen assured me that the goal is that it will soon be accepted by all.
As GITrak moves through its development stages, we could soon have real access to the specialists who understand our needs. And maybe crises like the one my son experienced will be avoided. Hope never hurts.
By Wendy Lyman
What sets IBDLyfe apart from other online IBD platforms? I am here to answer that question.
IBDLyfe is breaking out of the present-day mold of social media support groups and becoming much more than that. IBDLyfe wants to educate and innovate with you.
I am a mother who has been caring for a child with ulcerative colitis (UC) for the past ten years, so I can tell you that this site is significantly different from the others out there. As our esteemed Lyfebulb Founder and CEO Dr. Karin Hehenberger explains it, “IBDLyfe provides peer-to-peer connectivity, building communities that also build insight and promote mentorship.” We share motivational stories that help others open up about their IBD symptoms. We provide clinical, curated, and validated resources, as well as a space for members to monitor their health so both the patients and care partners can keep records to feel stronger and more confident when meeting with medical providers. This information can also help us measure the impact of drugs and treatments. And, of course, we host a forum where patients and care partners can talk about various topics, from the technical to the intimately personal, in a safe place that includes moderation.
With the help of our IBD champions, ambassadors, and patient entrepreneurs – all experts through their life experiences with IBD – we believe that we can have a direct impact on patients and that their outcomes will be improved. We plan to partner with institutions to conduct clinical research and offer seminars co-hosted with academic institutions. We will use the industry to source and recruit patients for speeches, workshops, challenges, and market research, meaning that patients will be able to make money using their own expertise in their disease area. Our platform will also eventually aid in clinical-trial enrollment, making it faster and more accessible. We predict that the quality of life and experience with the disease will be improved, leading to reduced costs to the system and accelerated innovation.
And that is what sets IBDLyfe apart from the rest of the players; we are creating an innovation engine. It is that drive to discover what more we can do and create the tools to make it happen that inspire innovation. And innovation is, in the end, what will improve the lives of IBD patients and their care partners.
I think about my now adult son and how much of his life is still ahead of him as he battles this chronic condition. I think about how great it would be to see the innovations sparked here on IBDLyfe come to fruition and positively impact my son’s health and the quality of life of everyone on our platform. Please join us.
Together, we can continue moving the innovation engine forward! Check out what these patient entrepreneurs already brought to the table in the 2021 Lyfebulb and Arena Pharmaceuticals Innovation Challenge: Imagining Life Without Limits – An Inflammatory bowel Disease Innovation Challenge here.
Originally posted on Jackie Zimmerman
I saw a Twitter thread recently from a friend and fellow advocate who was wondering what his future in patient advocacy looked like. I’ve seen these types of threads a lot over the years and I understand…I’ve been there. Maybe it’s the new set of Lion King socks I recently purchased, but I’ve been sharing this idea of the patient advocate circle of life a lot lately and now it’s time to share it with all of my advocate friends. Whether you’re new to advocacy, or you’ve been around the block a few times, take a peep. Let me know what you think. #sorrynotsorry about all the Lion King imagery.
I believe there is a lifecycle in advocacy.
After almost 15 years in the game this is what I’ve noticed:
- New Advocates – These are the freshly inspired bunch. They’re newly diagnosed or have a loved one who is. They’re fired up about helping people and are excited to be sharing their stories. They do a lot of one-on-one education and support for other patients.
- Strong and Steady Advocates – These are the advocates who have been on the scene for a few years. They’re still working on growing a following, and they’re getting some cool opportunities in advocacy. Their hard work is starting to pay off.
- The OG Advocates – The OG advocates have been advocating for many years. Many started before social media and their names are permanent fixtures in their communities. They’re invited to be speakers at events, to sit at the table with pharma, and are often working hard behind the scenes on things that NDAs prevent them from sharing.
I remember when I started my first blog many moons ago, I was so eager to talk to other patients. To help them. To educate anyone who would listen. A few years in, one of my best friends in advocacy stepped back. She closed her website down, all of her blogs and resources were gone, and I was angry with her. I kept thinking about all the amazing things she had created for other patients that were no longer available. I couldn’t imagine walking away from advocacy and just being done. Wasn’t she letting people down? Was she turning her back on us? How could she do that?
Fast forward a few more years, and I was starting to feel the weight of the work that goes into advocacy. And I do mean work. Never let anyone tell you that your blogs or videos, even your Tweets, are not work. All of us here know the time it takes to write a blog or film a video, create the graphics, and schedule it out on social media. Whether you’re working a job right now or not, your advocacy IS a job and we all take it so seriously. This is why when it stops lighting up your life it can feel very heavy. I didn’t love advocacy the same way I did before. My advocacy fire was slowly dying. The work felt too much like work. The juice wasn’t worth the squeeze and I stepped back. And guess what? No one noticed. People with IBD didn’t have their butts blow up. The MS patients who read my blog didn’t collectively collapse. The world went on. And you know why? Because of new advocates.
The second someone decides to step back temporarily or permanently from advocacy there is always someone new and excited to jump on the scene. It’s some Lion King circle of life shit. Once the new advocate isn’t “new” anymore, they become the slow and steady advocate and if they stick around long enough they become the OG. And I want to really highlight this:
THIS ISN’T A BAD THING! It’s easy to read that and think, “oh so if I take a break, I’ll be replaced.” That’s not what I’m saying. I’m saying that if you take a step back, your fellow patients and caregivers are not abandoned. There are other people who will step in and support them and that is actually a beautiful thing. It adds new perspectives, diversifies our communities and adding more people who back the same cause is never a bad thing. Not to mention the harsh reality of advocacy is that sometimes our friends and peers succumb to their illnesses and in order to keep fighting the good fight we need new people to take their places.
All of this suffice to say: It’s ok to stop. But only if you want to. This isn’t like you’re aging out of the system. Your voice will always matter in your community. Your story will always matter. This is the internet, after all, your shit will live here forever. If advocacy doesn’t set you on fire (in a good way) anymore…step back. Take a break. Hell, stop altogether if you want to.
The work we do as advocates isn’t about us and it’s also 100% about us at the same time.
I always looked at advocacy like an appendage to myself. It is me. I am it. But it’s not. It’s something that I do and when it no longer serves me in a positive way anymore, I can stop doing it. And I have at times. I think that is something we all forget. You have permission to stop if you want to and it doesn’t have to be a moral dilemma. You can always come back and if you have somehow possibly forgotten…you’re probably sick in some way or support someone who is. You need to put yourself first. Your goal is to live a happy and healthy life, and creating content you don’t like, attending Twitter chats that bore you, and stressing out over weekly vlogs goes against the happiness goal and probably wears on the health goal.
The world of advocates, online and in-person, cross condition areas is one of the most amazing communities I’ve ever been a part of. In the last 5 or 6 years, I’ve seen a lot more advocates connecting outside of their primary communities and I think it is only making us stronger. This community sees you. We know how hard you work. We know the time it takes to be a digital creator and we also know that more times than not you’re not getting paid to do this stuff. You may not even be getting thanked very often.
So, fellow advocates, please take care of yourself. Take some time off. Come back …or don’t. Thank you for all the work you do for your communities. Thank you for being apart of my community and for supporting me and everyone else in our growing family of advocates. Your work matters and so do you. Never forget that.