I think everyone thinks about their life and how they live. When you’re a kid you are carefree. You run around playing all the time thinking you are immortal and nothing can hurt you. As you get older, you learn to appreciate life and when you have a family you get insurance.
Growing up with IBD really makes you appreciate life even more. When all your friends are in school or outside playing, a lot of times we are in bed with pain. When kids get together to have a pizza party we are sipping tasteless broth. We look at ourselves in a mirror and ask why. Why can’t I have a normal life..and we start to really appreciate what we do have. After awhile we learn that even though we are sick, we are alive. After you have lived some years with the disease, you see that you can live and start to want to do things. We have all been there. We look at what we haven’t done and think, what can I do to enjoy life. Maybe it is taking up jogging since you can stay local and near bathrooms. For others, maybe it is skydiving for charity. But we learn that just because we have a disease, it doesn’t have to end our lives.
Over time we learn to live with our pains and drug side effects. We know there will be hospital visits and stays in our life. We know there are days we won’t get out of bed…or the bathroom. But we also know we have a life to live and we try to live it to it fullest capacity.
When I was 15, I got sick and was in bed for a week. After I got diagnosed, I went back to school and tried to live a normal life. Within half a year, I got pneumonia and that put me in a horrible flare. I stopped going to school. I never saw my friends. My life was staying in bed watching TV (this is before cable). It was watching certain shows that made me realize I was wasting my life. I found a new hobby while I was sick. I started to love cooking and I was watching a number of cooking and food shows. I then started to realize that if I stayed in bed I would never amount to anything.
So, my parents got me some teachers that would come to my home to teach me. I caught up on my schoolwork and eventually graduated. I wanted to live life again so I decided to chance it and go away to college. I wanted the full experience and yes, I did get it. I decided that I wasn’t going to let my Crohn’s run my life. I got my education and degrees. I met some great people and eventually also me my wife.
Over the years I would have some Crohn’s related issues, but I would always think back to my bed ridden days and vow to continue living life. I would not ever let my disease get to me.
And then my life changed. My father in law lived with Ulcerative Colitis for years. He had it so bad that he had to have his intestines removed and lived with an ostomy for a number of years. I saw life in him. He had numerous problems because of the bag but he always chose to fight on and live. And then his and my world crashed. He was in and out of the hospital with an unknown problem. Eventually it affected his heart too much and he passed away from a heart attack. His ostomy caused him to have electrolyte problems which eventually caused a lot of problems for him.
I say my world crashed because he was an inspiration to me. He always tried to stay positive with his situation and I could only wish to be half a man if I was ever in his situation. During his funeral, his friends would talk about how he was always full of life and had such a drive.
Part of me never grieved for him. I never had the chance. My wife and mother in law were devastated and I had to stay strong for them. I was hurting on the inside but could never show it. As the days went on, it was harder to show my feeling. Here it is a year and half later and I still have the pain. It still is deep in me and I don’t know how to release it. Not only do I hurt because I lost a great father in law, but I hurt to know that one day I can be in that same situation.
Medicine has not helped me over the past 24 years. I am on the last medicine available and even this is experimental for Crohn’s. I know I have a mild case but if I fail on meds and have to eventually go off all meds, my Crohn’s will get worse. Where will that lead me. Will I need surgery? Will I have to have my colon removed? Will I be like my father in law and end up with tons of problems?
No one likes facing their mortality. As I kid I did a lot of dumb things. Now, with my 40th birthday creeping up to me, I look to what I have left in my life. I know that I won’t live forever. My question is how will I live it though. Will I spend each day thinking will this be the day my medicine stops working? Or will I live it like it is my last and have a blast. Right now I take it one day at a time. I try to enjoy the time I have here. I do what I can and try to help who I can in the moment. If I am here tomorrow, then I will continue on. But unlike when I was 6, I know I have an expiration date. Hopefully, it won’t be for another 50 years as I still have a lot to do with my life.
This post left me feeling a little as you are experiencing, not that I have lost someone close to me but that I too have come to the end of the line in terms of meds. Remicade had stopped working for me now and I have been asked to take part in trials for a drug called Tysabri (natalizumab). This is a big step for me because the biggest issue with it can lead to a brain virus which it seems is incurable! So as I also have a young family do I go for it in the hope that I dont get the virus or Surgery. My Doctor is great, fantastic in fact and I trust him but where I have always tried to keep my Disease on the back burner, it seems to have crept to the front. I am in a mess over this one and have every medication out there and although Remicade was good to me for 7 years, it also has expired for me.
So yes I also think about whats important to me and I want to live to a ripe old age but the older I get everything seems to get much more complicated.
[…] I think about how open I became with my feelings. I let out how I am still torn up inside over the loss of my father in law. Writing about it helped me to realize that we all carry burdens with us, even when we […]
So touched by this post and your commitment to attitude and fight. (sorry I’m so many days behind in catching up with everyone’s writings – I’m approaching finals week for school…) xo