Disclaimer: Diaryofself will mention medical symptoms and medical stuff in this post. This post is not a substitute for a trained medical professional. Diaryofself is not a medical professional, but a software developer. I don’t even play a medical professional on TV. If you are having symptoms of Crohn’s Disease or Ulcerative Colitis, see a doctor. Also, if you see that I mentioned something incorrect about IBD on this post, please tell me! I don’t want to contribute to the spread of misinformation.
Hello, my lovely readers! It’s another awareness blog! Today on May 19th, we celebrate World IBD Day. This is the day where people with Inflammatory Bowel Disease (shortened to IBD), their caregivers, friends, significant others, and families come together to raise awareness and fight IBD. The most common Inflammatory Bowel diseases include Crohn’s disease and ulcerative colitis (though people have heard of Crohn’s and not ulcerative colitis). You’ll often hear about someone’s experience with IBD, but we don’t often enough hear about the people who are a part of their support system. Families and friends are affected by someone’s chronic illness as well. However, remember that we should not speak over top of the people who live it. We will never fully understand what they’re going through, even if we hear their stories. Why do I care about World IBD Day? While I do not have IBD, my workout buddy (mentioned in an earlier blog post) has ulcerative colitis. We should also care about this day of spreading awareness for the reasons Colitis Ninja mentioned in one of her blog posts from 2015.
To start off, I shall link you to a few blogs that I recommend. I used these blogs to raise my personal awareness of ulcerative colitis when my workout buddy (the same awesome one I mention in this blog post) told me of his diagnosis within the past few years.
Fierce and Flared. This blog is written by a woman named Brooke. She was diagnosed with ulcerative colitis in 2012, had her colectomy and temporary ileostomy in 2013, and now has a jpouch. She also has done advocacy work to raise awareness and is the founder and editor-in-chief of Companion Magazine for IBD.
Colitis Ninja. Colitis Ninja was started by Amber as her personal form of therapy. The ninja represents a fighter, since people with invisible illnesses fight every day and despite their outward appearance, their bodies are declaring war on the inside. The goal of the site is to provide support to patients and caregivers living with ulcerative colitis, crohn’s disease, indeterminate colitis, jpouches, and ostomies. She also creates restroom access cards to give people with IBD access to bathrooms that aren’t often granted to the public. Note: As of this post, she is only selling the access cards in the United States, Canada, Ireland, and the UK.
I feel like this blog post will get long, so many apologies for that. Awareness can’t exactly be done in 140 characters like a tweet. Inflammatory Bowel Disease is commonly diagnosed before the age of 35, but diagnoses have been made later in life (my workout buddy was in his mid-40s when he was diagnosed). It used to be thought that diet and stress were causes of IBD, but there is no known cause. However, it is suggested that genetics, environment, and immune system causes may be a possibility. There is no cure for Crohn’s disease or ulcerative colitis.
Ulcerative colitis symptoms can include abdominal pain/discomfort, blood or pus in stool, fever, weight loss, frequent diarrhea, fatigue, reduced appetite, and a sudden urge to have a bowel movement. Source
Crohn’s disease symptoms include frequent diarrhea, rectal bleeding, weight loss, fever, abdominal pain/cramping, fatigue, and reduced appetite. Note: Crohn’s disease can affect the entire gastrointestinal tract, so partial or total removal of the colon will not “cure” Crohn’s. Source
Note: People with IBD can also experience joint pain and other symptoms that are not GI-related. Both of these diseases have many symptoms in common, and there have been cases of misdiagnoses between the two common Inflammatory Bowel Diseases. Honest conversations must be held between you and your healthcare provider. I know, people get all shy when talking about poop and people are embarrassed to say that they sometimes don’t make it to the bathroom in time before having incontinence.
As I stated earlier, my workout buddy has ulcerative colitis. Since I only see him during the boxing and kickboxing classes, it doesn’t affect me too much. Sometimes, I don’t see him that day if his symptoms are present or if he’s tired. When people ask me where he is, I sometimes don’t know. Now that I have his number, I often know ahead of time if he’s going to have to skip working out. He’s a very funny guy, but I sometimes question if he’s legitimately funny or if it’s just a mask that he’s wearing (people with chronic illnesses can develop anxiety and/or depression). Because his medication lowers his immune system, I sometimes worry if he’s going to once again catch and infection and lose the battle. Back in November, months before I met him, he got MRSA and it went into his bloodstream. After many antibiotics, doctors didn’t know what else was going to help get rid of the MRSA. My workout buddy had to face the reality that he was likely going to die. But he’s still alive. I don’t know how, but something worked. What if something like that happened again? Would he make it this time? It’s something I don’t like thinking about, but I know it’s a real possibility.
So what are some things you can you do if someone you love and/or know has Irritable Bowel Disease? It can all be summed up by one thing: treat them as if they were a healthy individual.
- Still invite them out to places, even though they may have to decline at the last minute due to feeling very unwell.
- Increase your own awareness of their specific disease to better understand what’s going on (but remember that you will not truly understand what they’re going through if you have a healthy colon).
- Know what things to not say to someone with IBD. Gutsy Ginger does a good job in the linked blog post with telling you what not to say, and unlike many other people with IBD, she tells you what things to say instead.
- Ask them how they’re doing. It shows that you care about them.
- Believe them. This is very important for people with IBD or any other invisible illness. Sadly, people with invisible illnesses aren’t taken as seriously as those with a visible illness because they look fine on the outside.
This is not an inclusive list. I hope you all learned a little more about Irritable Bowel Disease. Here’s my video about it. If you make it to the end of this blog and saw that I mentioned something incorrect about IBD, please tell me! I don’t want to contribute to the spread of misinformation.