Inflammatory Bowel Disease Isn’t Just About Pooping

IBD Isn't just pooping

“IBD just makes you poop your pants.”

Have you ever had someone tell you that? I have. It was a pretty frustrating(infuriating?) moment. Because IBD is so much more than just shitting.

Now, I can only talk about this from what I have experienced. Everyone with IBD experiences problems with IBD differently. My doctors don’t know which one I have. For now, I’m ok with this but I’m sure that at some point things will come to light as to which one I do have.

How is IBD more than pooping your pants?

It’s the urgency. It’s the fact that your body will let you know that you have literally two seconds to get to the bathroom or your going to be shitting yourself. IBD doesn’t care that you’re not near a bathroom. All your body knows is that it needs to go right fucking now and there isn’t any way to stop it. No matter how hard you try.

It’s the pain. It’s wanting to scream your lungs out because you hurt so much. It’s feeling like your intestines are trying to rip themselves from your body. It’s the fact that you don’t want to walk because the abdominal cramping is so bad and your ass is that raw. It’s the joint pain from either the medications that you’re taking or because it’s an extraintestinal manifestation of IBD.

It’s the dehydration. I’ve been so dehydrated that I’ve had to spend 3 days in the hospital and receive 10L of IV fluid to get back to where my fluid levels should of been. I was literally shitting myself to death. It took two weeks for me to go from a healthy 24 year old to a very sick person who lost 8 pounds in the span of two weeks. As fast as I was taking food and water in my body was sending it right back out.

It’s the fatigue. The fatigue can be the worst at times. You’re so exhausted from your body attacking itself. And from having iron deficiency anemia that it’s all you can do to get through work. Let alone get things around your house taken care of or go grocery shopping. You get exhausted after having a bowel movement. No matter how much  sleep or rest you get, you’re still tired.

It’s the side effects of your medications. And let me tell you, those side effects can be terrifying. There are times the side effects of your medication are scarier than the disease itself. But, you have to decide whether those side effects are worth the risk or if you just want to continue to have your IBD run/ruin your life. There also aren’t a whole lot of medications to treat IBD. There are also times that people will find a medication that works(like Humira) and then build antibodies for it and then they have to find something else that works.

It’s the horror. I’ve seen stuff come out of my body that has terrified me. You know it’s not normal, but there’s nothing you can do about it. Seeing that stuff can start to make you feel kind of hopeless. You wonder if you’re ever going to get better.

It’s the depression. You realize that when you have this disease that you will be dealing with it for the rest of your life. This is what you get to look forward too. Yeah, you can be in remission, but you also feel like a ticking time bomb. You don’t know when your next flare is going to be or how bad is it going to be. You don’t know if your medications are going to fail or if your going to have such severe side effects that you have to stop taking them. You don’t know if your going to have to be hospitalized again. You don’t know if your IBD is going to get so severe that it requires surgery.  All of these things weigh on you.

It’s being invisible. With IBD, you don’t look sick normally. Just because I look healthy doesn’t mean I am. I could be having a really bad day when it comes to symptoms but I might just look tired. It’s not obvious that this disease is wreaking my body. If I could show you what my colon looked like during my bad flares, I’m sure that things would be different.

It’s the weight fluctuations. This can go both ways. You can be gaining weight because your on Prednisone and it makes you hold onto water. Or you could be having so many bowel movements a day that your body can’t keep up digesting and absorbing the nutrition it needs and you start to lose weight. You can also lose weight from not being able to keep up with the fluid intake that your body needs while in an active flare.

These are the things that I deal with as someone who has Indeterminate Colitis. This is a look into my world and into my head. These are the things I deal with and think about on bad days. I do my best to not think about these things on my good days. But it’s always there. Lurking in the back of my mind.

On my good days, I do my best to hold onto the good. To enjoy life. Because I never know when things are going to take a turn for the worst.

7 thoughts on “Inflammatory Bowel Disease Isn’t Just About Pooping

  1. Yes to all of this!

    The thing that really makes me crazy lately, since I’ve had to start using the cane, is, “If your problem is your intestine, then what do you need a cane for?” The implication is almost always that I’m exaggerating or faking it.

    I mean, even if pooping your pants was your only symptom–that’s still pretty awful to have to deal with. We get used to it pretty quickly (I mean, as much as you can ever really get used to that), but most people are so horrified at the thought of crapping their pants that they have to turn it into a joke so they can deal with the discomfort of just the thought of it.

    Basically, I feel like no one but the sick person has the right to make any statement about chronic illness with the word “just.” Sometimes I’ll use it myself as a coping mechanism: “Oh, it’s just another crap-fest” and so forth, but when other people–even people with a chronic illness–direct it at someone else, it’s incredibly invalidating. I think we need to be able to write people tickets for talking about chronic illness/disability like assholes. And if they keep it up, we get to duct-tape their mouths shut until they understand the grievous error of their ways.

    1. That would make me crazy too.

      It is really awful. I carry an emergency kit around in my car just in case something happens when I’m not at home. I’m doing much better but the urgency is still there. That is so true. I’ve noticed that. People aren’t comfortable talking about poop. I had a friend comment on how I’ll just talk about it anymore and I told him that it’s my life now.

      I hate those statements. You don’t know what someone else is going through unless you have the same disease. And even then, diseases affect everyone in different ways. It does feel very invading. I don’t want people belittling me and my illness because they think it’s not that bad when they have no idea.

  2. Thanks for sharing this. It offers a true insight into what life with Indeterminate Colitis. I don’t have it, but I relate to some of it, mostly the invisible illness side of things. I’m sorry there’s so much misconception and I’m sorry you experience all of this. Hugs x

  3. I’m in the process of getting a diagnosis for stomach issues, and IBD is on the table. The one thing that surprises people is the amount of pain whatever I have causes. It’s horrible. 🙁

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