IBD: It’s So Much More than the Physical Stuff
So you have Crohn’s disease or you have ulcerative colitis…
When I tell people about the physical things I have gone through they are shocked. The blood transfusions, the intravenous feedings, the surgeries, the hospitalizations, and so many other things about it all seem brutal, and they are, but the physical things for me are so much easier than what the disease has actually done to me as a person.
Take for instance surgery. Many of us have had our entire large intestines removed or even more than that. Some of us less. The physical part of my surgeries were grueling. The first surgery alone to remove my colon and rectum which was so diseased at the time, but then to take my small intestine and reconstruct it and attach it to a different area of my body. Then to create an ostomy by attaching another part of my small intestine to a hole in my abdomen. THAT was a lot to handle. Waking up with a wound spanning half of my torso and also an ostomy bag attached to my abdomen… it was a lot.
The physical things are so much easier than what the disease has actually done to me as a person
The physical wounds heal. They heal a lot faster than the emotional wounds. The pain eventually goes away. It is how the brain psychologically handles having an ostomy or J-pouch that is harder. My body looked different. It behaved different. Do we hate it? Do we love it? Will someone love us? Will life always be this way?
Think about medications – It’s easy to swallow a pill. It’s not that hard to sit for 2 hours with an IV in my arm while I receive an infusion. Hell, even injecting myself with medication isn’t a big deal in my mind. But what medications do to us is where it can hurt. There is great reward but with that sometimes comes great risk. It’s the weight gain, the insomnia, the moon face, acne, joint pain, hair loss, fatigue, infections, cancer risk, etc; that is the real hard part about taking medication for some of us.
And then there is our dignity. Something that I lost long ago. I could write a book on this alone. How being a child who was alone with adults who were touching the parts of my body that I was always told no one else should touch made me feel. What it’s like for a patient to have perianal disease and how that wipes out any dignity you thought you had…
The physical part of this disease is beyond awful; there is no denying that. But the lasting impact it has on who we are as people can sometimes be harder to heal from. I like to think that I am a strong person. I think that in spite of all that I have been through and will go through that I have managed to find all the positive in this that I can. In a lot of ways I have learned to like myself more because of my chronic illnesses.
Now, as an advocate of this community and interacting with so many of you on a daily basis, I see patterns. I hear the same stories over and over of fear, embarrassment, isolation, depression, and anxiety. I don’t often get emails about the physical stuff, rather I get emails from lonely people who need someone to listen to them. Someone to understand them on some level.
You are tired but you are not just tired from the physical. You are mentally exhausted. You are living the lives of people with a chronic illness and that takes a lot out of you that no one in your lives can understand unless they have been through it themselves.
There is a silver lining to all of this but the difficult parts should not be ignored. The difficult parts are why we are all here. This site exists because I know that there are others out there who need support. It is here so that you don’t have to feel so alone and it is here to help me too.
There are those of us who have grown up with this who have never learned how to grow into real independent adults.
There are kids who are too sick to go to school. Their friends tease them and ask them questions because they miss so much or because their face is puffy from steroids.
There are teens in high school and young adults in college who have been forced to grow up too soon. Worrying about things that young people shouldn’t be worried about.
There are boyfriends and girlfriends fighting with each other and husbands and wives divorcing. Parents who are struggling financially and children feeling like guilty burdens.
We worry for what the future has in store. We have anxiety that spirals out of control. We wonder if anyone will accept us for who we are. We hope our friends don’t forget about us when we are constantly cancelling plans or are away in the hospital. We go through depression, we deal with anxiety, we isolate ourselves. We battle our self-esteem when our bodies drastically change due to surgery, medications, weight fluctuations, or a combination of all three.
And this is only touching the surface on all the things that you or I have felt. And though that all just sounded like a bunch of negativity it’s real. You might not be going through this right now but you probably have in the past or will again in the future. We have all felt scared.
What do you think about this? Is the physical harder than the other stuff or is everything else where the real pain lies?
Sara
