Crohn’s and Colitis: More Serious than Poop Jokes
Just a “poop disease?” Absolutely not! Crohn’s disease and ulcerative colitis are serious illnesses wrongly stereotyped as simple tummy troubles.
Crohn's Disease and Ulcerative colitis are serious diseases; Why joke about it?
Patients who have inflammatory bowel disease (IBD), the two most common IBDs being Crohn’s disease and ulcerative colitis, are often seen making poop jokes which only fuels the misconception that IBD is to IBS as water is to H2O. Are we a big part of the problem when it comes to the way others understand our illness? I get why so many patients use humor; it’s easier than getting real with another person about what is actually going on with our bodies. For a lot of people many of the symptoms of Inflammatory Bowel Disease are not easy to talk about.
A good sense of humor can be a great tool to have when it comes to coping with a serious chronic illness and there is nothing wrong with a little laughter along the way to help you get through it. I actually do think there is a time and place for these things which I will discuss here later.
Normal “poop issues” do not result in needing your entire large intestine removed
IBD is way more serious than it’s misconceptions and here is why:
Disease. Disease that causes [often] irreversible damage to the digestive tract via inflammation. Inflammation is our immune system’s reaction to harmful stimuli causing swelling, redness, and pain. Usually inflammation is a good thing; a process in which it protects us from injury and infection and helps us heal.
In a healthy person the process of inflammation would stop after it protected the body from harm and helped 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 occurs.
The longer intestinal inflammation is active the risk of damage increases -> strictures, fistulae, hospitalizations, surgeries, and disability become more likely.
Visualize it
I’ve used this example in another post. Let’s say that your childhood best friend is riding her bike and you’re on her handlebars. Next thing you know you’re on the cement and your knees are seriously injured.
Have no fear, it’s your immune system to the rescue! Your body reacts by protecting you from any harmful stimuli that may have gotten in the wounds and then helps heal them. Your knees becomes swollen, red, and inflamed. Once the immune system has finished it’s job the inflammation turns off and you start to heal – a scab forms, the redness and inflammation go away, and you are left with a scar.
This is similar to what happens in the digestive tract of someone who has IBD. The immune system reacts to perceived danger with inflammation and the intestinal wall becomes red, swollen, and inflamed.
Except the inflammation does not shut off even though there is
no threat in the bowel for the body to be fighting with inflammation. It just keeps going causing ulcers and bleeding that can lead to even worse damage like rupture of the bowel, fistulae, fibrosis, and more. Most patients with IBD go through repetitive cycles of inflammation and healing unless their disease is mild or controlled with medication and/or surgery.
Usually inflammation stops after what triggered it resolves but in IBD inflammation continues, causing destruction
Just how Serious is IBD?
Here are some of the uglier things that Inflammatory Bowel Disease can cause. They are not easy to talk about but it’s important people are aware of them so that the stereotype of IBD being just like having IBS or the flu can stop.
- Fistula: A fistula is a tunnel from one part of the body to another. This can occur in IBD because the sores in the intestine can penetrate so deep that they go all the way through the intestinal wall creating a small hole. This opening may result in a tunnel from the intestine to another area of the body like another part of intestine, the vagina, bladder, or skin. Imagine stool coming out of your vagina. Not fun. Humiliating, in fact. Sometimes patients need surgery to heal a fistula or they might have drains placed to help them heal. Having a drain coming out of your bottom can be very embarrassing for a patient and they may have to wear pads in their underwear because of the drainage. All difficult stuff to deal with so it’s easier to minimize Crohn's and UC into “poop stuff.”
- Abscess: A cavity filled with pus and infection is called an abscess. Abscesses can occur in the intestinal wall or they could be visible abscesses, such as abscesses located around the anus. Abscesses look similar to boils and can be extremely painful for a patient. So much so that it is difficult to sit, walk, or sleep. Treatment often involves lancing the abscess to drain the infection. Since this involves painful pus filled boils on the butt… well, it’s just easier to joke about butts.
- Bowel Perforation (Rupture): Chronic inflammation and ulceration can weaken the bowel wall so much that it perforates. Another cause of perforation results when there is a narrow portion of the intestine causing pressure to build up behind it. That pressure can become so great that it causes a perforation. When the bowel perforates it can spill the contents of the intestine into the body which is life threatening and requires immediate surgery.
- Strictures: Narrow areas in the intestine that are caused by scar tissue. Strictures can cause pain and make eating very difficult. It’s kind of like when pipes get clogged and then your sink does not drain well because stuff doesn’t run through it as well as it should. In a person with IBD the "clogged pipe" is an area of the intestine that is narrow. It can cause pain, nausea, and vomiting since it is difficult for the contents in the intestine to pass through the narrowing. Sometimes surgery is required to fix the problem by either removing the section of the intestine where the stricture is located or by doing a surgery called a stricturplasty.
- Major Surgeries: Surgery may be required to remove sections of the small bowel or part or total of the large bowel. Because of these surgeries a patient may end up with a stoma and an ostomy bag or they will have something called a J-pouch.
- Diarrhea: I think we all know what diarrhea is except “normal people” do not experience this on a day-to-day basis and they don’t see a toilet full of blood when they stand up. At my worst I was going to the bathroom 20+ times a day, though I normally didn’t count. I was losing blood every single time I went to the bathroom. Every.single.time. I lost so much blood that I needed multiple blood transfusions. All the diarrhea, blood loss, and pain caused me to lose a lot of weight and become very fatigued. The bloody diarrhea and the frequency of my bowel movements had me isolating myself. I was afraid to leave home in fear of needing a restroom urgently and normally I was too sick to leave home at all. This all gets explained as “we use the bathroom a lot."
- Urgency: If you’re reading this and you do not have IBD it might be hard to understand this kind of urgency. This urgency is so bad you have a mere few seconds to get to the bathroom or you have an accident. What happens when you’re in a car? In a class at school? At your job? Shopping in a grocery store? The more this happens the more scared of being away from home you become.
- Fissures: Think of pooping out glass. This is what it can feel like when you have fissures. Fissures are tears and cracks in the lining of the anus that cause pain and bleeding when you have a bowel movement. They can be quite painful, especially when having a bowel movement so much so that the patient fears having to use the bathroom because of the pain.
- Colon Cancer: The risk of colon cancer increases with duration and severity of disease.
- Systemic Manifestations: Crohn’s disease and ulcerative colitis are known as systemic diseases. This means that IBD does not only affect the digestive tract but nearly every organ system in the body is affected. Patients can experience arthritis, arthralgia, serious skin conditions, eye problems, liver and kidney problems, etc.
- Malabsorption and Malnutrition: Inflammation in the small intestine can decrease the ability to absorb nutrients and so can certain abdominal surgeries. Decreased appetite and malabsorption can lead to malnutrition. Poor nutritional status can cause iron deficiency anemia and bone loss among other things. Nutritional status is so important that children with IBD are at risk for delayed onset of puberty and growth problems.
Not as Simple As Just Poop, Right?
Not as simple as just poop but also not easy to talk about. These things can make a person feel humiliated and cause them to isolate themselves. It affects self-esteem and body-image and so much more. Yes, at times people living with IBD have lives that revolve around the bathroom but there is more than that going on.
So why all the bathroom humor?
Would you feel comfortable telling someone that you have a tunnel connecting your rectum to your vagina so that when you pee or just sit there poop is seeping out of it? NOPE! Would you want to tell someone about the blood loss you are seeing every time you use the bathroom or tell them about the accident you had in your car
last night when you didn’t make it home fast enough? It’s easier to joke and minimize those things all down to “poop stuff.” Life with IBD is hard!
Crohn’s disease and ulcerative colitis affect our bowels and the way they function. Tests to diagnose and treat IBD primarily involve butts and poop. IBD-related surgeries often alter how our bodies get rid of waste. Yes, a lot of IBD has to do with butts, poop, and use of the bathroom. For many patients these things can rob you of your dignity and can feel down right humiliating at times. We are taught that they are gross, dirty, and something to feel ashamed of and so we feel gross, dirty, and ashamed.
We make fun of ourselves and joke about our symptoms because it feels easier sometimes, especially if you are young or newly diagnosed. Who wants to tell their friends how many fingers they’ve had up their butt? I’m sure none of my non-IBD friends have gone to the bathroom and stood up to stare at a toilet full of blood or have been teased in school for having had an accident. It’s not easy to talk about. It just isn’t!
So we use humor to explain things to others or sometimes because you just have to laugh. You have to laugh or else you’ll cry.
We laugh. We laugh so we don’t cry. We tell poop jokes, butt jokes, and spread bathroom humor because it’s easier. We make fun of ourselves to get through the more difficult times. We laugh…
Yes, a lot of #IBD has to do with butts, poop, and use of the bathroom. For many these things can rob you of your dignity and can feel humiliating at times. We are taught that they are gross, dirty, and something to feel ashamed of and so we feel gross, dirty, and ashamed.
Misconceptions about IBD: Are Patients Part of the Problem?
IBD is no laughing matter. It’s serious and people without it can’t understand that if the only thing we talk about is poop. I see IBD Facebook groups and pages, Twitter and Instagram accounts, and personal blogs focusing on these things, and ONLY these things, way too often. When we do this we are sending people the wrong message. We are basically telling them to associate our disease with IBS, the flu, or food poisoning. If the people who are living with Inflammatory Bowel Disease do nothing more than create stupid bathroom humor accounts then we have no one to blame but ourselves when others in our lives don’t get it.
So many complain that people do not understand how serious IBD is but they can’t understand if you are unable to talk about it correctly. Instead of focusing on bathroom humor focus on the why. Why is because of disease. It’s because of inflammation and what that inflammation is capable of doing.
Things like accidents, urgency, and so forth happen because of damaging inflammation in the digestive tract and that is just the beginning of a very complicated disease.
with that said, i do think Bathroom Humor Does Have It's Place
I do feel like there is a time and a place for this type of humor and I do not want to completely discredit it’s importance. There are two things I like to think of in regards to things like this and that is awareness and support. When I think of awareness I think of it as something I want to share OUTSIDE of the IBD community so that I can educate the general public better. When I think of support I think of something that is shared INSIDE the IBD community.
I think bathroom humor is a good thing for patients to laugh about amongst each other from time-to-time. It is nice to know that others have gone through things that you have and it feels good to share those stories and relate to each other and not feel so isolated. The first day of Camp Oasis each year us counselors sit around and tell hilarious true stories about our lives with IBD and I swear it’s the hardest laugh I have all year. The kind where tears are strolling down your face and you can’t catch your breath. Life with Crohn’s disease or ulcerative colitis sure puts you in shitty situations. Literally!
It’s just that these poop jokes and the focus on the bathroom does little for awareness. People associate things to things they are already familiar with and if we are constantly just talking about the bathroom they associate IBD with IBS, the flu, a tummy ache or food poisoning and do not understand the serious underlying disease that comes with it.
Sara
