We had so much fun filming this video for Nature Outlook’s focus on Inflammatory Bowel Disease.
Continue readingBowel Disease in the Internet Age
Rational Thoughts About My Perianal Abscess
All joking aside having an abscess is an awful thing to deal with. I try to joke a bit and maintain my alarmingly great sense of humor but not only are they gross but they are extremely painful. Severe pain that interrupts sleep and makes wearing clothes, walking, sitting, and so forth a real struggle. It’s incredible how painful they are. The last time I had one…
Continue readingWhat You Should Know About IBD-Related Fatigue Part 1
Fatigue is frustrating because it is difficult to measure and can be a challenge to treat. Many people living with Inflammatory Bowel Disease declare that they still experience daily fatigue even in remission and that it poorly affects their quality of life. What seems like one of the most common symptoms of Crohn’s disease and ulcerative colitis can often feel like one of the most neglected. Is there a way of measuring IBD-related fatigue and anything that can be done to treat it?
Continue readingDisordered Eating in Crohn’s Disease and Ulcerative Colitis
Have you ever cut out entire food groups or severely restricted the amount of food you eat because of your Crohn’s disease or ulcerative colitis? Have your IBD symptoms caused you so much pain and discomfort that you fear eating or have avoided meals all together? Do you obsess over “safe” foods or try to control your symptoms when you are out with other people by eating at specific times or avoiding food until late in the evening when you’re home…
Continue readingWhat Are Extraintestinal Manifestations of IBD?
Inflammatory Bowel Disease is a systemic disease – it is not limited to the digestive tract but can affect nearly every organ system in the body.
Extraintestinal manifestations are complications of IBD that occur outside of the bowel and this post gives an overview them.
Continue readingJoint Pain and Inflammation in Crohn’s Disease and Ulcerative Colitis
Arthritis associated with Inflammatory Bowel Disease is commonly known as enteropathic arthritis. This type of joint inflammation can involve both axial and peripheral joints. Sometimes arthritis is the first symptom of IBD to show up and can preceed a diagnosis of IBD for a long time until it finally declares itself. Arthritis is more likely…
Continue readingIBD and Your Period: All You Want to Know and Then Some
If you feel like your IBD symptoms become worse during your period you’re definitely not alone. Menstruating individuals who have been diagnosed with Crohn’s disease or ulcerative colitis often report worsening of symptoms during menstruation. Here you’ll find the most comprehensive guide on Inflammatory Bowel Disease and menses on the internet. Guaranteed or your money back!
Continue readingA Higher Risk of Skin Cancer if you Have IBD?
People who have Crohn’s disease or ulcerative colitis have an increased risk of developing skin cancer compared to the general public. The good news is that it’s only a slight increase in risk and there are actionable steps you can take to protect…
Continue readingCrohn’s Disease: A Day in the Life
I have perfected the art of doing things while smiling, while using a tone of voice so energetic you’d never know I was suffering. I will laugh and smile you into thinking I am doing well because who really wants to hear the truth?
Continue readingMy Worst Crohn’s Flare: When Time Stood Still
At this point I was no longer living. I use the word living differently than meaning to be alive. Living to me is something more than breathing air in and out. It is more than just existing. Living requires quality of life. I was not living back then, I was just alive…
Continue readingNormalizing Pain and Symptoms that Healthy People Would Seek Help For
And then your mind starts thinking about that.
About death.
About what it must be like to be a sick person. Then you laugh at yourself because this IS what it’s like to be a sick person because YOU are one of them. “I thought I was going to die,” was real to me…
Continue readingCan You Die From Crohn’s Disease or Ulcerative Colitis?
I think that if you live with a severe chronic illness that death has to cross your mind at least once or twice. The first time I saw the amount of blood I was losing through my bowel movements I was scared to death, of death. This was not right; this was not supposed to be happening! I was a kid and that blood scared me.
I’m bleeding internally, what do I do? Am I dying…
Continue readingCrohn’s and Colitis: More Serious than Poop Jokes
In a healthy person the process of inflammation would stop after it protected the body from harm and helped to heal it. In people living with IBD the inflammation does not shut off and the result is open sores (ulcers) and bleeding in the intestines until the overactive immune system is brought under control. If the intestinal inflammation is left untreated then serious complications and irreversible damage can…
Continue readingFatigue and IBD: A Story of Absolute Exhaustion
Somehow I finished my shower and that took everything I had. Everything. I sat down and I cried because I forgot how easy it used to be. How you never think about things like your morning routine. How fast and easy it is to take a shower, dry your hair, put on clothes…
Continue readingJust Diagnosed With Crohn’s Disease or Ulcerative Colitis? Advice from Patients Who Have It, Too!
If you’re feeling scared, confused, and overwhelmed you’re not alone. Every single one of us living with IBD has stood where you stand now as a new patient who has just been diagnosed with Crohn’s disease or ulcerative colitis.
Like most people one of the first things…
Continue readingAre Your IBD Symptoms Worse At Night or During the Day?
For me the nights are the hardest.
When I talk to other patients about this it seems that I’m the odd one out. Most IBD patients say that the mornings are most difficult for them – usually consisting of several trips to the bathroom, pain, and difficulty in getting up and moving. Even during some of my most severe…
Continue readingDisordered Eating in Crohn’s Disease and Ulcerative Colitis
So food. We all need it to survive, yes?
But what happens when you have a disease that attacks your digestive system creating bleeding open wounds (ulcers) and damaging inflammation in any or all of the following: your mouth, esophagus, stomach, small intestine, colon, and rectum (or just your colon and rectum if you have UC)?
Continue readingHow the “Ugliest Disease” Made Me Feel the Most Beautiful
For many years I was too embarrassed to talk about my Crohn’s disease so I grew up depressed and alone with my illness. The ugly things that IBD can do to the body is just awful. It fucks with areas of the body that are considered taboo by most to discuss and the symptoms inflammatory bowel disease can cause are capable of stripping you of your dignity.
I thought that Crohn’s disease was the ugliest disease you could possibly have but now…
Continue readingHaving Kids with Crohn’s and UC. Is it Selfish?
Clearly I don’t have any children of my own right now so I can’t offer any advice from that standpoint. Hell, I don’t even know if I want children sometimes. It’s not about whether or not I like kids (I do), or whether or not I would be a good mom (I would), but it comes down to whether or not I am healthy enough to be the kind of mother I’d hope to be.
The decision to have kids was a topic of conversation that came up with the teen girls at Camp Oasis this summer. Many mentioned how they were fearful of having children because they didn’t want to pass IBD on to their children. Some even said they don’t want to have kids because of this possibility.
Continue readingA Poem About Being a Teen with IBD by a Teen with IBD
Because I have seen pain I can barely understand splayed
on the faces of my sisters.
Because I have seen them fight with courage.
Because sometimes it’s so much
easier to give up;
because medicines stop working and our
bodies get tired and it’s
so. hard. to go forward; so hard…
Causes of Fatigue in Inflammatory Bowel Disease
Fatigue is one of the most reported symptoms of people living with Crohn’s disease and ulcerative colitis. Fatigue is not the same thing as being tired. When you are tired you…
Continue readingWhat Exactly is A J-Pouch?
How do you do the number 2 without a rectum from which to poo? All about the J-pouch!
Continue readingI Hurt Everyone Around Me Because I Was Angry About My Life with Crohn’s Disease
I was angry.
Angry that I am a good person and I became sick. Why me? Angry that my friends were out living their lives and finishing up school and I wasn’t. Angry that this was…
Continue readingThe Difference Between ‘Colitis’ and ‘Ulcerative Colitis’
Can you have both Crohn’s Disease AND Ulcerative Colitis? No.
Can you have both Crohn’s Disease AND Colitis? Yes.
Let me explain…
In our community we often use the word colitis to refer to the IBD known as ulcerative colitis but is there a difference between what defines colitis and what defines ulcerative colitis?
Continue readingGetting Diagnosed with IBD as A Child
I had a disease.
“Disease.”
I didn’t even want to say it. The word felt dirty. I was tainted, my body damaged. I wanted to shower just to feel clean but no amount of showering could ever wash away the disease inside of me.
Continue readingI Lost All Hope: My Darkest Days with Crohn’s Disease
“I was crapping my pants.
Crapping my pants!
Every night. Do you know how scary that is (yeah, you probably do)? To wonder if you’re ever going to be able to have control over your bowels again. What went through my mind… how will I date someone? How will I sleep next to someone if I am always having accidents? How will anyone…
Continue readingThere is Nothing That Makes You Gross, Dirty, or Unattractive Because You Have IBD
I’ve gone through some real lows during the many years I’ve had this disease. I’ve been down to 82 pounds, my hair has fallen out, my body has broken out in acne from steroids, I’ve lost teeth, and have been crippled by…
Continue readingCan You Have BOTH Crohn’s Disease and Ulcerative Colitis?
For some reason over the last decade this has become a very hot topic of debate amongst patients in the IBD community so I’d like to address this misconception, help you understand where it comes from, and provide you with accurate information to help you better understand IBD and why it isn’t possible for…
Continue readingMy Experience Using Methotrexate Injections for Crohn’s Disease
I have active disease in my small intestine and my symptoms are pretty bothersome so there is definitely room for improvement. Remicade alone hasn’t seemed to be enough to keep my Crohn’s disease in remission so with my doctors guidance we decided to add weekly methotrexate injections into…
Continue readingI Spent Years Isolated and Feeling Ashamed because of Crohn’s Disease
When I was on steroids and experiencing side-effects that made me feel ugly, I was alone. When I lost my job, had to quit school, and moved back home, I did it by myself. When I was a teenage girl dealing with puberty and chronic illness, I thought I was the only one. When I was having accidents, I isolated myself. When I had J-pouch surgery, I didn’t know anyone who could relate…
Continue reading12 Things to Look for When Choosing A GI to Treat Your IBD
Our doctors are the people (we hope) we are going to form a partnership with in managing our illness. You and them together, working as a team, trying to get your health…
Continue readingIBD: It’s Not About Poop!
Serious, damaging inflammation in the digestive tract is what causes all this poopin.’ Unlike the flu or IBS which does not cause any damage to the digestive tract, IBD can cause so much damage that parts of the digestive tract need to be removed…
Continue readingBathroom Anxiety: Tips for Using A Toilet Away from Home
What if you have to go to the bathroom, come back out, and immediately have to go to the bathroom again? What if you just keep having to go to the bathroom? Over and over again. I mean, that’s pretty much what it’s been like lately for you. Surely they’ll never want you back in their house. No friends for you! Friendless forever; that’s your middle name.
What the hell are you going to do if the toilet…
Continue readingDating/Relationships When you Have Crohn’s Disease or Ulcerative Colitis
Telling someone you like that you have a chronic illness can be intimidating; especially if you are young or don’t have a lot of practice talking about it. It’s human nature to want…
Continue readingMy Thoughts Were Destroying Me: Self Hate and IBD
It’s easy to feel unattractive.
It’s easy to lose who you are.
It’s easy to start feeling worthless,
when you have IBD…
Continue readingThe Role of TPN in Crohn’s Disease and Ulcerative Colitis: What is it and Why is it Used?
TPN, or Total Parenteral (pronounced pah-wren-tur-ull) Nutrition, in the simplest way to describe it is to receive nutrition through your veins and into the bloodstream. To go more in-depth, it is used to feed a person intravenously to bypass the normal process of eating and digestion. Basically you won’t be eating by mouth and food will not be traveling through your digestive tract. You’ll be “eating” through your veins…
Continue readingMesalamine Enemas for IBD: My Experience
But that’s not all! I was supposed to use an enema every night before going to bed and was supposed to keep it in for 8 hours.
Eight
HOURS!
I repeat. Me. With my incredibly out of control disease. Was supposed to inject an enema into my severely ulcerated and inflamed intestine and keep it there for EIGHT HOURS. UUUhhhhhhhhhh…. how?
Continue reading7 Causes of Constipation in Crohn’s Disease
People usually do not associate constipation with Crohn’s Disease since diarrhea and urgency are much more common symptoms of the disease. In some cases constipation can even delay the diagnosis of Crohn’s disease or ulcerative colitis and in other cases a patient who has already been diagnosed with IBD might not realize that the constipation they are experiencing could be a sign of a serious problem.
Constipation is when…
Continue readingCrohn’s Behind Closed Doors: It Gets Ugly, It Can Make You Feel Ugly
Crohn’s disease made me feel ugly
It destroyed my self-esteem
It caused me to isolate myself
One day I decided I couldn’t keep letting it do this to me. I sought to take the power it had over me back into my own hands
Inflammatory bowel disease is nasty when it’s at it’s worst so it’s no big surprise that a large number of patients…
Continue readingTapering Off 40MG Prednisone After A Severe Crohn’s Flare
Traveling while feeling this bad sucks. I just want to lay down and curl up in a ball but I feel obligated to visit with people and…
Continue reading