Inflammatory Bowel Disease
Know that the pain will pass, and, when it passes, you will be stronger, happier, more sensitive and aware – Mel Colgrove
To all the caregivers, bosses, classmates, and friends. To all the boyfriends and best friends, to the girl that I see at yoga class. I want you to know this:
I have IBD. It stands for Inflammatory Bowel Disease. (It does not stand for Irritable Bowel Disorder, or anything else, and it’s not the same as IBS). If you know me, you probably know this. I talk about it frequently. I volunteer for various organizations. I have my elevator speech worked out, and I can rattle off definitions, facts, and statistics in my sleep. But do you know what that means to me, and the other patients who live day in and day out with IBD?
We all know IBD awareness is important. But there are more reasons that I want you to know about it. I want you to be aware on a personal level, because for this single person, (and millions of others like me) it affects my whole life. I want to be able to go up to someone- a friend or a stranger, and when I say “I have Crohn’s” or “I have Colitis”, they get it. They get what my needs will be, they understand that it’s serious, they trust that I’m not seeking attention- or worse, pity. I want people to have a basic understanding of my disease, and a more than basic respect for my experience. So this is what I want you to know, and I’ll do my best to explain it.
IBD is really complicated. When I was first diagnosed, no one told me this. No one told me that it would affect me in ways I could never expect. A lot of those ways were emotional and social. A lot of those tested my strength, and my friendships. My whole life changed, some for the worse, and some for the better, and even when I’m in remission, know that I will never be the same person.
I want you to understand the urgency. Think about the last time that you had an accident. No, really. Were you two years old? I was twenty-eight. I was in a bar. The line was too long for the ladies’ room. People don’t understand, I mean no matter how strongly you explain it, they don’t. Everyone has said “I can’t wait, I gotta go!” at some point- on a road trip, in a long line, but they hold it. We can’t always, and it’s more than embarrassing. The first few times it happens, it’s shameful. Learning to control your bowels is one of the first things you learn in life.
When we lose that control as a teenager or twenty-something, your mind can hardly process it. Our body is reverting on something it knows to be right, both functionally and by our social upbringing, and there’s nothing we can do. But then it happens again, and again and again. After a while, we stop holding back the tears and learn to handle it. We take clean underwear and wipes everywhere we go. We learn to clean up the sh*t and get on with life. We learn that this doesn’t have to stop us from doing what you want, we do what we can and keep moving. And we find that’s a life lesson that we can take to other areas of life.
I want you to know about the pain. This is a tough disease, really, it’s hard to handle. Many patients of Crohn’s and Colitis say that the pain is the worst part. It’s deep in your gut and in the rest of your body, and when your gut can’t handle it anymore, it moves to your joints, to your head, to your bones. It’s a pain we all deal with, for some of us, it’s constant, and we forgot what life without it is like. Sometimes it’s in our digestion- the pain of going hungry is something we choose over the pain of having food go through our bodies.
Can you imagine what that is like? Hunger- another very basic human instinct, like relieving ourselves, is taking in nutrients and calories. We’re sometimes forced between fulfilling this basic need and avoiding the pain. That is how bad it can get. Could you comprehend being faced with that choice? And often, there’s no end in sight. We don’t stop because of this. For people who don’t know this pain, it would be reason to take a day off. For us, we push through as best we can. We live our lives, we work our jobs, we raise our children. For any amount of weakness we show you, we’re holding much more in. Because of this, we’re strong. We endure. We can handle so much more than the average person.
Understand that IBD can set us into cycles. Stress is a big one. Even basic, everyday stress – finals week, deadlines at work, arguments with our partners – you never know what is going to trigger symptoms. And dealing with symptoms on top of these everyday stressors increases the stress – which makes the symptoms worse, and before we know it, we’re stuck in a downward spiral. Please know that acts of kindness and support that you show us could be what breaks the cycle.
When I was in the worst of flares, I could not think of anything I wanted more than someone to listen unconditionally, and spend time with me, even though the most I could do was sit around watching movies. We learn to not take things for granted. We appreciate the healthy times, and we’ve gained the perspective to live every moment, to not let life pass us by- not in a cute-quote-on-a-magnet kind of way, but in a real, almost desperate way. We learn to live our lives to our potential, to not waste a minute.
Please know that sometimes, I will need you to make an exception for me, to believe me. If I am exhausted from not absorbing nutrients and struggling to balance daily life, it is because I am near my limit. If I need to take an extra day off, to ask to use your store’s bathroom, whatever it may be- I’m not making excuses or taking the easy way out. This is why we want you to understand what living with Crohn’s or Colitis is like. To help us keep the integrity of our community, to recognize that we do our very, very best, when we are up against a barrier bigger than anything you’ve likely ever handled.
And through our desire, no- need to be understood, we have learned to understand others. We know just how important it is to learn to see things from another’s point of view, because we have learned how different each person’s experience with life can be, whether or not they are fighting IBD, or another disease, or whatever their obstacles may be. Because of this, we grew a little, out of the naivety of childhood and abandoned some of our youthful ignorance. We grew in empathy, another important value, another life lesson.
I want you to know precisely what “chronic illness” means. It means there is no cure. There is no end. We have no choice but to deal. And when that gets too hard, we dig deeper and find strength we didn’t know we had, then we deal some more. There literally is no choice. When you think you’re out of strength, you find more. The human spirit can prove amazing.
Think of the hardest athletic event you can. A marathon? An Ironman triathlon? The Tour de France? Sailing around the world? All of these have a finish line, a limit, a time period that eventually allows you to say, “I did it, I can rest now”. Chronic illness is harder than all of those. We can’t drop out of this race. We have no coach. No one handing us a medal. We have no off season. We just. keep. fighting.
You’re not used to this. You get a cold and you know it’s going to be over in 2 weeks. You feel horrible, but each day you feel a little bit better, you focus a little less on your discomfort and a little more on being normal. You have an understanding that this is going to end, like it always does. You break your leg. You can’t walk for a summer. You give up your summer activities, you can’t go swimming, you get strange tan lines. But each week, you get closer to getting out of your cast. And once you’re out, you get stronger and stronger. Forget everything you know about sickness and pain. You can’t comprehend disease with no end until you’ve lived it, and when, as a patient, this concept hits you, it hits hard.
But because of this, because we are left in this situation without an opt-out button, we become so strong. Stronger than we ever imagined, and wiser too. We don’t associate our condition with weakness (although this is real, it’s not lasting). We associate it with resilience, strength, empowerment. The innate knowledge that we have it in us to survive, and we know because we’ve faced it.
We call on the quote “You never know how strong you are until being strong is the only choice you have”, and understand it is truer than true, for us. Not even endurance athletes can claim this. They don’t know strength like we do, because pushing through is not an event for us- it is life. Through it all, we keep a humble sense of pride and accomplishment. We don’t get a medal or our picture in the paper, but we get a stronger sense of ourselves, and maybe even the chance to inspire the next person. And all this is something that I wouldn’t trade for anything.
I want you to understand the complexity. There are positives and negatives wrapped up in every element of life with this disease. In every bout of pain we find the opportunity to strengthen, in every accident we find a dose of wisdom, in every friend lost we find one who does understand us, one that we wouldn’t have met if it was not for IBD, and we are instantly bonded because of our innate experiences with disease. IBD is one big life-altering package deal. These all come together, the positive, the negative, and the whole in-between range.
I want you to understand how much I wish I could explain this to others, how I wish I could let someone feel the pain, the physical and emotional pain, for just a day. But I also know that no one is able to understand this that hasn’t been through it. We want you to ask questions, to listen and not judge, to be accommodating to our needs while also helping to empower us, believe in us. To acknowledge that you don’t understand, but you want to know anyway. Our experiences are important. To us, and to the world.
Finally, I want you to know that through all the challenging flares, extreme pain, loneliness, doctors, accidents, and everything else that comes with Crohn’s and Colitis, I am a better person. I am not just stronger in one aspect, I am wholly a better person. How can I explain that I wouldn’t wish this on someone else, yet at the same time I wouldn’t give it up? Because these diseases are so hard, we find greater rewards. In the movie A League of Their Own, Tom Hanks’ character Jimmy Dugan says “It’s supposed to be hard. If it wasn’t hard, everyone would do it. The hard is what makes it great”, and this is true.
I’m glad life didn’t give me an easy path. This one is worth it. I have purpose and perspective on life that many people aren’t ever blessed with, for the entirety of their life. I have strength, resilience, and a true appreciation for things like true friends, unconditional support, and even the mere fact that there are others out there on this journey with me.
So when I say “Ask Me About My Crohn’s” or “Ask Me About My Colitis”, I want you to see the glow about me. To respect me and my experience. To be inspired by me. While I do want to educate you, I don’t want you to focus on my dash to the bathroom or weight fluctuation. I want you to ask why my eyes light up at the top of the mountain I just hiked, why I work so hard to accomplish things in my career, or even why a simple, painless meal with good friends can light up my face like a kid on Christmas.
I want you to see my drive and passion and wisdom and stronger faith and purposefulness and optimism and confidence and all of the hidden treasures we pick up along this journey, and I will tell you, I am proud of myself, I am proud of who I have become. I’m glad you asked, I am this way because of IBD.
Source: Want You To Know about Crohn’s and Colitis, The Great Bowel Movement, September 11, 2013.
The very features that make memory T cells so desirable for vaccines – their capacity to live for such a long time and mount a stronger response when they encounter a microbial invader for the second time – may explain why autoimmune diseases are chronic and lifelong.
Even if you’ve never heard of it, you’ve almost certainly come across triclosan. A highly effective antibacterial and antifungal ingredient, triclosan is found in all kinds of toothpastes, hand sanitizers, deodorants, mouthwashes, detergents, cleaning supplies—if you use household products, you’re interacting with triclosan every day. So it’s worrying that a new study, published in Science Translation Medicine on Wednesday, suggests that triclosan exposure could increase rates of colitis and colon cancer.
Inflammatory bowel disease (IBD) is a mounting burden on health-care systems globally.
aving a close relationship to IBD has taught me about the urgent need for medical advances and cures for the disease.
More people are being diagnosed with Crohn’s disease and ulcerative colitis than ever before, but researchers aren’t exactly sure why. A variety of factors including genetics, weakened immune systems and the environment may be at play.
When I talk about IBD I'm often faced with blank stares and so here is my A-Z guide to Inflammatory Bowel Disease.
Major hospitals are finding hypnotherapy can help sufferers of digestive conditions like heartburn, colitis, acid reflux and irritable bowel syndrome.
New research done in a mouse model of inflammatory bowel disease (IBD) has suggested that viruses called phages, which have the ability to infect and kill gut bacteria, may be involved in the disease.
The disease is one of a variety of unrelated but ongoing gastrointestinal disorders. Of these, some of the most common complaints are about gluten intolerance and functional bowel problems (when the gut doesn’t work properly, such as when someone has irritable bowel syndrome). Crohn’s disease and ulcerative colitis are examples of inflammatory bowel disease.
All of these problems have very different causes, although having one of them may put you at an increased risk of developing another.
A cure remains elusive because we don’t know what causes IBD. However, the recent mapping of the human genome (the complete set of a person’s genetic information) has strengthened our grasp of how genes relate to complex immune diseases like IBD.
When our gut’s immune system starts acting more like that of the rest of the body, the gut gets inflamed and starts attacking its own cells. The end result is illness. Diseases like celiac (an autoimmune reaction to gluten) and ulcerative colitis (one of two types of Inflammatory Bowel Disease, the other being Crohns) occur when the gut’s immune system starts treating food, and our own body, like an interloper. These conditions often leaves sufferers in tremendous pain and at an increased risk of both malnutrition and colon cancer. But if researchers could figure out how to calm down that immunological response, it might be possible to create a treatment.
When people think of Crohn’s disease and ulcerative colitis, they usually think, “it’s just a bathroom disease” or “it’s just a bad stomach ache.” What they don’t consider is the multitude of ways that inflammatory bowel diseases (IBD) impact the 5 million people worldwide living with these diseases.
The paper discusses, in detail the pros and cons of the different IBD imaging modalities that need to be considered in order to optimize the imaging and clinical evaluation of patients with IBD.
Although there is no cure for IBD, we now have sufficient evidence that several pharmaceutical compounds are able to dampen the intestinal inflammation. This review provides an overview of the experimental studies done using monoclonal antibodies and anti-inflammatory drugs. Most of the results reported in the papers show that anti-inflammatory compounds can inhibit the proliferation of cytokines such as TNF-α and IFN-γ, but unfortunately have potential side effects, including vomiting, diarrhea, and nausea.
“Ulcerative colitis and Crohn’s are in many ways the poster child for which sequencing the genome is having a tremendous impact,” Dr. Xavier said in an interview.
Equally important to improved treatment has been understanding how environmental factors like diet and antibiotics can disrupt the balance of microbes in the gut. Some bacteria are protective and keep the gut healthy, while others result in chronic inflammation.
These diseases have been known primarily as "pooping diseases" because many patients frequent the bathroom as a result of the cramping and abdominal pain caused by IBD. However, there are many aspects of the disease that are far worse than spending time in the bathroom.
Bowels, especially those that don’t function properly, are not a popular topic of conversation. Most of the 1.4 million Americans with inflammatory bowel disease — Crohn’s disease or ulcerative colitis — suffer in silence.
But scientists are making exciting progress in understanding the causes of these conditions and in developing more effective therapies. And affected individuals have begun to speak up to let others know that they are not alone.
A shadow network of patients are trying to treat their own debilitating diseases — by infecting themselves with gastrointestinal worms.
We’ve spent centuries trying to kill bacteria. Now, scientists have shown that subtler approaches can work—at least in mice.
A few weeks after my ulcerative colitis diagnosis, I began blogging in an effort to inform other people who might feel unsure about life with UC. When I mentioned on my site that I'd undergone an ileal pouch-anal anastomosis (IPAA) surgery series, which involved three major operations to remove my colon and construct my J-pouch, the most common question I received on social media was “What’s life like with a J-pouch?”
We all know IBD awareness is important. But there are more reasons that I want you to know about it. I want you to be aware on a personal level, because for this single person, (and millions of others like me) it affects my whole life. I want to be able to go up to someone- a friend or a stranger, and when I say “I have Crohn’s” or “I have Colitis”, they get it.
Inflammatory bowel disease research, just like clothes and music, is subject to trends. To give you a good idea about where things are heading at the moment, I’ve composed a list of five hot topics in IBD research. The choices were based mainly on my own research experiences, the research prioritization report published by the Crohn’s and Colitis Foundation of America (CCFA), as well as ideas found on patient forums.
The goal of The IBD Immunologist is to provide you coverage of the latest IBD research news and with the basic immunology background needed to understand it. The most exciting new research on IBD is focused on the immune system. This site will help you stay abreast of the latest information.
I have Crohn’s Disease. I’ve was diagnosed when I was 7, so I’ve pretty much had it my whole life. In 2010 I had several bad flare-ups, but I’m learning more about my body and how to deal every day. Despite having this autoimmune disease, I consider myself to be a very healthy person. I wrote an article for The Frisky about my life with Crohn’s.
Since I started this blog over 2 years ago now my life has become consumed with advocacy and raising awareness. I eat, breathe, and poop it. I am here to help, so please send me your questions, comments, hate mail…whatever. I found when I started this blog there weren’t a lot of other jpouchers out there willing to give the true story about their lives with a jpouch and an ostomy. I however have no problem making a fool of myself on the internet to help others. Call it my gift to the world.
Documenting the human side of Inflammatory Bowel Disease and how it has changed my life.
I started writing Colitis Ninja™ for therapeutic reasons… it wasn’t long before I noticed that the little ninja wasn’t just helping me, but she was helping many others learn how to cope with IBD. She became a symbol of hope and helped put a face on the invisible battle that millions of people fight every day.
Rather than encouraging people to feel sorry for us, Colitis Ninja™ seeks to inspire others.
Support group and forum for Crohn's Disease, Ulcerative Colitis, and other IBD.
forCrohns mission is to fund research that helps those with the condition today and contributes to finding a cure for Crohn’s disease in the future whilst making more people in the UK aware of the disease and its symptoms.
Hey there! I’m Sara (some people call me Sadie), a classy, sassy, female living life with Crohn’s disease, a j-pouch, intestinal dysmotility, and autoimmune arthritis. It is my goal to show others how to be positive, and to own their disease instead of letting it own them, while educating them about Crohn’s disease and ulcerative colitis (IBD) along the way.
This is my personal story about my specific Crohn's disease. I talk about poop a lot. I cuss occasionally and all pictures are completely jacked from the internet...probably illegally. I claim no rights to them.
"Imperfection is beauty, madness is genius and it is better to be absolutely ridiculous than absolutely boring."
Those of us with IBD and ostomies certainly aren't perfect, but that is what makes us so special. Stay tuned for inspiration!
Elizabeth was diagnosed at a young age and has dealt with Crohns with positivity and maturity ever since. Now that she’s in college, she’s sharing her story of college life, support groups, and clinical trials - GBM
This blog chronicles my return to the world of outdoor adventures with a permanent ileostomy.
Laura bravely, openly, and honestly about life with Ulcerative Colitis and an ostomy. Her videos include both helpful “how-to” demonstrations, personal experiences, and tips for dealing. Laura’s YouTube popularity even landed her a spot discussing ostomies on Tosh.0! - GBM
So Bad Ass came into being as a website and blog about Inflammatory Bowel disease and my journey with Ulcerative Colitis and living with a stoma.
Staying positive, and kicking some Crohn's Disease butt.
My name is +Frank Garufi Jr. My son, Domenic Garufi, is 8 years old and has been battling Crohn’s Colitis disease since he was born. My hopes is that this site will bring about awareness for Crohn’s Colitis disease along with giving others a perspective on what Domenic goes through on a daily basis.
The Great Bowel Movement is a social awareness movement with the goals of empowering patients associated with Inflammatory Bowel Disease (IBD) including Crohn’s Disease and Ulcerative Colitis, as well as J-Pouch and Ostomy, to embrace their disease, be proud of their experience, and spread awareness throughout their communities.
Uncover Ostomy is an awareness campaign sparking a positive conversation about the ostomy. We share positive stories and thought provoking images–dare we say sexy?–to spark this conversation. We invite you to share your comments and ideas on this website, on Facebook, on Twitter and everywhere that you engage with other people.
Running to the bathroom.. my journey to cure IBD.
Founded in 1967, the Crohn's and Colitis Foundation of America (CCFA) is a 501(c)(3) non-profit organization dedicated to finding cures for Crohn's disease and ulcerative colitis and improving the quality of life of children and adults affected by these diseases, collectively referred to as inflammatory bowel diseases (IBD). CCFA funds cutting-edge medical and scientific research, provides supportive and educational programs and aims to raise public awareness about IBD.
Crohn's and Colitis UK is the working name for the National Association for Colitis and Crohn's Disease (NACC). Founded in 1979, the charity has been providing information and support, funding research and fighting for change by bringing together people of all ages who have been diagnosed with IBD, their families and friends, and the professionals involved in their care.
Living with a chronic disease like IBD can sometimes be discouraging, and you may feel embarrassed by your disease.
Other times, contacting one of the IBD support groups or organizations listed below may be just what you need. You may take comfort in learning how other people with IBD are managing their condition.
The official website of Professor John Hunter - Everything you’ll ever need to know about IBD.
SCD Lifestyle is a can-do blog that focuses on the “specific carbohydrate diet” as a healing approach to Crohn’s, colitis and IBDs - Healthline
Inflammatory Bowel Diseases® brings the most current information in clinical and basic sciences to physicians caring for patients with inflammatory bowel diseases, and investigators performing research in IBD and related fields.
Journal of Crohn's and Colitis is concerned with the dissemination of knowledge on clinical, basic science and innovative methods related to inflammatory bowel diseases.
The purpose of fecal transplant is to replace good bacteria that has been killed or suppressed, usually by the use of antibiotics, causing bad bacteria, specifically Clostridium difficile, or C. diff., to over-populate the colon. Fecal transplant has also had promising results with many other digestive or auto-immune diseases, including Irritable Bowel Syndrome, Crohn’s Disease, and Ulcerative Colitis.
In this highly anticipated book, Dr Greg Plotnikoff and Dr Mark Weisberg show how to listen to your gut and to interpret symptoms as important messages that can help correct imbalances.
Safe and Effective IBD Treatments.
While not an IBD specific blog, follow a girl with Colitis as she finds ways to enjoy the things she loves and still be healthy! - GBM
Neither ulcerative colitis nor Crohn's disease should be confused with irritable bowel syndrome (IBS), a disorder that affects the motility (muscle contractions) of the colon. Sometimes called "spastic colon" or "nervous colitis," IBS is not characterized by intestinal inflammation. It is, therefore, a much less serious disease than ulcerative colitis or Crohn’s disease. IBS bears no direct relationship to either ulcerative colitis or Crohn's disease.
Inflammatory bowel disease (which is not the same thing as irritable bowel syndrome, or IBS) refers to two chronic diseases that cause inflammation of the intestines: ulcerative colitis and Crohn's disease. Although the diseases have some features in common, there are some important differences.
No special eating plan has been proven effective for treating inflammatory bowel disease (IBD). But for some people, changing the foods they eat may help control the symptoms of IBD.
There are no blanket food rules. Changes that help one person with IBD may not relieve symptoms in another.