People with Crohn’s and UC talk about poop… a lot. We make bathroom jokes and enjoy good/awkward potty humor. Why? Because if you can’t laugh at yourself and your situation you’ll be miserable. It is true that poop plays a part in our diseases… but it isn’t poop that makes us sick. Inflammatory bowel diseases are just that! Inflamed, ulcerating diseases of the intestines. It only begins in the digestive system.
It’s not easy to explain our diseases to other people. The main reason being our most obvious symptom… the one our diseases usually start with: diarrhea. Embarrassing! This is not the only symptom or complication we have but it is, unfortunately, the only thing that people latch onto. Why? Because it’s the one they can most relate to. The only one they can even begin to understand. Everyone poops.
The truth is, diarrhea isn’t even half of what we go through. Imodium is virtually ineffective and won’t cure us. Pepto-Bismol won’t ease our nausea. These symptoms don’t just plague us during the day either… I can’t tell you how many endless, sleepless nights I and so many others have experienced because of our diseases… yet, we are forced to live on and keep on trucking or risk not working and becoming unable to pay for the expense of our diseases. And they are expensive! But that’s another topic for another day.
It isn’t about the toilet
Yes, my symptoms started with many trips to the bathroom. Then the GI bleeds came. After that, intense pain in my abdomen. My colon was slowly being destroyed by a disease. It became difficult to live a normal life. I couldn’t eat anything. I was having a hard time working. I didn’t want to go out with friends. My nutritional levels dropped making me fall even further into sickness. I didn’t even want to practice karate.
People who suffer from Crohn’s Disease and Ulcerative Colitis, often experience many of the following symptoms/complications:
• severe anemia
• severe dehydration
• joint pain
• weight loss
• intestinal strictures
• Toxic Megacolon
• eye problems
• skin problems
• intestinal perforation
• colon cancer
• nutritional deficiency
This is by no means a complete list and some of these may seem minor, but imagine suffering from these symptoms on a daily basis. Over-the-counter medication is useless. Pain medicines, more often than not are ineffective. People with Inflammatory Bowel Disease are often hospitalized. Many of them require surgery… even multiple surgeries. A few of them lose their colons and end up with ileostomies for the rest of their lives. I had my entire colon removed and lived with an ileostomy for three months before being reconnected to function with a j-pouch. My mother had to have 15 inches of her colon removed. My aunt has had so much of her small bowel removed that she cannot afford to lose anymore or she’ll require weekly vitamin/nutrient infusions.
Nutritional deficiency is no joke! I’ve been deficient in B12, vitamin D and Iron… and I was weak, with absolutely no appetite, craved (and ate) pure salt, had no energy and kept developing sores in the corners of my mouth. Iron deficiency causes heart problems, brittle nails, headaches, etc. People with iron deficiency are also at risk for infections.
Many of my friends are in the hospital right now. For some of them doctors are having a hard time finding the proper treatment, while they slowly waste away. Some require multiple blood transfusions. Others need chemo-type drugs. Then there are those who are given Prednisone… Which is a beast all by itself and people with Crohn’s or UC dread when it is prescribed.