Crohn's disease is such a difficult disease for people to understand because it can be SO different from person to person. You may meet someone with Crohn's disease who is taking no medication, has never been hospitalized and only experiences signs/symptoms of the disease on a very infrequent basis.
The next person may be on multiple medications, have had several surgeries, spend lots of time in the hospital and/or be unable to work. Crohn's disease is SO.MUCH.MORE than what you do in the bathroom. It is NOT just a "pooping" disease.
I can only share the experience that I have had with Crohn's disease - I hope to have a guest blogger share her experience in the coming days so stay tuned for that.
Living with Crohn's disease is difficult because no one wants to hear about your bowel movements. And let's face it, most people aren't all to anxious to SHARE their bowel movements either. It is difficult because you can go to bed at night and wake up the next morning in debilitating pain....guess what that leads to? People saying "I just saw her last night and she was fine! She's not sick".
I hate the "vicious cycle". For me the vicious cycle is this - I begin not feeling well, start showing signs/symptoms of a "flare up" which usually involves cramping, pain, multiple trips to the bathroom. My mind says, cut back on the eating - the less eating the less pain, etc. there will be to deal with. If there is nothing in the GI system then the bad stuff will stop, right? So, I cut back on the eating. If you don't feed your body it starts to revolt and sustain itself on the stores of energy you have stocked up. This leads to weight loss. It also throws all the systems in your body totally out of whack. Dehydration can be a problem as well as absorption of vitamins and minerals. That can lead to dental, skin and hair issues. In extreme circumstances it can affect organ function as well; kidney failure, liver function problems, heart conditions can develop....you get where I'm going I think?
Those battles are just with the disease. There is a whole other set of potential problems when you introduce medications - they all come with their own set of side effects ranging from weight gain, hair loss, irritability, light sensitivity, increased risk of cancers, insomnia, fatigue, joint pain....again, I think you see where I am going.
Crohn's gets into your professional life - missing days of work because of doctor appointments, hospital stays or just plain NOT feeling well. It can affect your personal life - canceling plans frequently with friends, being confined to the house to be near the bathroom.
How would I briefly describe living with Crohn's disease? It's a roller coaster ride for sure. There are ups and downs - at times things seem like they are speeding along at other times it's like time is standing still. It's not glamorous but my goal is that the more WE talk about it, the more people will understand it.
Do you want a shirt with that logo? Do you have someone in your life battling Crohn's or Colitis? Check out all the awesome awareness apparel at The Great Bowel Movement!