This has been an exciting and strange year. I feel that I’ve got my physical and social life back, it feels amazing, but I still have feelings when I feel stucket and I have this OMG feeling when I wake up in the morning and see my colostomy bag. The word “permanent” is the scariest part of the whole thing, there’s no way back and it freaks me out sometimes, especially seeing all my ostomy supplies but fortunately just for some minutes.
I wish that I could have had this surgery many years before; I feel that I have so many years to catch up. But most of all I wish that my doctors would suggest this for me so I didn’t have to ask for this, and feel like a strange patient who would want this, that really bathers me.
I’m very happy for my new life with my ostomy, but I still don’t feel comfortable telling about my ostomy to others. One thing I really wish is going to the pole, but I don’t feel ready showering among non ostomates. It’s so expensive this pool activity so on the positive side, I save some money.
Before my surgery I was scared that I would end up as a person receiving sickness benefits for the rest of my life. Ok if nothing could be than I’ve had to accept that, but if something could be done, it just feels like a waste of money for a person who just wants to work.
Some of the things that I still struggle with are my blockage from time to time. It has been difficult knowing what sorts of food that giving me the most problems, and how much I can eat with some of that food. I’m also not used to small meals, I tend to over eat, and that’s a big challenge I have to face.
I often think about some of my friends in this situation. One of my friends is going blind, there’s nothing anyone can do. Another friend is going deaf. The only thing that can help her is a cochlear implant, but it’s so expensive that according to the rules she’ll have to be totally deaf on both ears, then she have to stand on a waiting list for four years. If she lived in the US her insurance would cover it, but she doesn’t have all that money to go to the US for this surgery. It puts my life in perspective. I know they would rather have a colostomy instead of going blind or deaf. So I should be happy not being in their shoes.
This fall I have been working as a voluntary teacher for a school for grown up with different disabilities. I was really sad to live, but it’s time to go on to another place. I’m on a job training programme so I’m supposed to be in different places to see how much I’ll be able to work.
I also had a wonderful course in Italy with some members of my education association. That I would have to spend that much time in the bathroom like I did before my surgery made a huge difference to my stay. The last day in Italy staying in a terrible hostel was not a good experience but I still live- and learn.
I wish you all a wonderful new year 2013! I’m glad to know you folks.