Ik ben net een dag thuis na de aanleg van mijn pouch, dan ga je wat surfen en dan vind je iets waarvan ik denk dat meerdere mensen dit willen lezen.
It’s so much more than the physical stuff…
So you have Crohn’s disease or you have ulcerative colitis. When I tell people the physical things I have gone through they are shocked. The blood transfusions, the IV feedings, the surgeries, hospitalizations, etc., 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.
Do you agree?
Take for instance surgery. Many of us have had complete 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 entire large intestine and rectum which was so diseased. But then to take my small intestine and reconstruct it and attach it to a different area of my body. And then to create an ostomy by attaching another part of my small intestine to an opening in my stomach. THAT was a lot to handle. Waking up with a wound half the size of my torso and also an ostomy bag attached to my stomach…
The physical wounds heal.They heal a lot faster than the emotional wounds. The pain goes away. It is how the brain psycologically handles having an ostomy or jpouch 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 that bad. But what medications do to us is where it hurts. I take remicade. People can get lymphoma from remicade! People risk getting serious infections from it. My immune system is suppressed, I must be careful around sick people. That makes me feel “different”. Methotrexate can cause all sorts of nasty things to happen. It’s freaking chemotherapy! What about the prednisone almost all of us have taken? It’s the weight gain, the insomnia, the moon face, acne, joint pain, hair loss, infections, cancer, etc. that we have gotten or can get that is the real hard part about taking medication.
Don’t get me wrong, 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 disease. But now, as a leader 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, pain, depression, and anxiety. I don’t often get emails about the physical stuff. I get emails from lonely people who need someone to listen to them. Someone to understand. 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 blog 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 face crippling anxiety. We isolate ourselves. We battle self-esteem demons 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 been scared.
I can only be real with you. I have said from the beginning that I am honest and real. Therefore it isn’t positive all the time because I’d be a liar if I said I haven’t struggled with all the same things you struggle with. I am positive no doubt, but I am also real. And being real means telling you that these things affect me too. That even with as positive and self-assured as I am that I still go through this.
What do you think about all this? Is the physical harder than the other stuff? Or is everything else where the real pain lies?
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