Alright... Next week will mark two months since I had the surgery that has been designed to save my life on one hand, and on the other hand has changed it forever.
Not that I ever was before -- many of my friends would agree -- I am not normal. As of March 4th I no longer walk the same path as other people. According to my research 500,000 Americans have ostomies. I can't even find data on how many of these people are in my age group... under 50. So, my status as an oddity increases.
Here I am, trying to figure out where things will lead. Over the past two months I have been existing in some kind of weird limbo. Physically, psychologically, emotionally.
It is difficult to summarize, but I suppose the easiest place to start is with the physical. As I have mentioned in other posts, when someone says that you are going to have major abdominal surgery and that you will need a long recovery time... Simply BELIEVE them. Believe every word they say. I had thought that I would be one of the in-and-out patients. Go into surgery, spend a day or two in the hospital recovering, maybe a week or so at home with my feet up and then return to work and my regular life. Ha, what a joke! The sad, ongoing joke has been on me.
Instead the surgery has left me light one entire colon, one entire sphincter and one entire rectum. It has left me WITH a new orifice created on my stomach and a wound where my butt-hole used to be that is reluctantly healing itself closed - never to be reopened.
As if this wasn't enough I have just recently begun a round of chemotherapy and radiation treatment for what ever cancer they might not have grabbed with the surgery. But I digress - this post is about my new life with my little friend and how it is changing the way I approach things....
First, while I was in Cleveland I was informed by a cheery nurse that many people with a stoma give it a name... like a pet... Gee, how FUN!! What if I get TIRED of the pet? Can I give it to someone else? Can I take it to the 'stoma-shelter'. Can I cap it with a .38? No... this pet I am stuck with forever...
Oh, and this pet is not a fuzzy one which will look adoringly at you, let you take it for a walk, or catch frisbees...no... THIS pet has the fun job of oozing my poo into a bag -- hopefully into a bag and not all over the place, like I hear from some people.
It does make its own special noises... It gurgles and burps and sputters. And, unlike a pet, I can't 'train' it to go outside and do it's business three times a day. I can't train it to let me know when it is time to 'go' . I have learned that I can make a GUESS as to when it will go...as I have discovered during one particular 'appliance' change when I found my self, almost comically naked, catching my pet's business with paper towels with one hand and trying to wash, shave, dry and prepare a new appliance with the other. Had it not been happening to me, I might have found it funny. In the end, I managed -- which I am discovering is what this process is...all about management. Since I am stuck with this new 'lifestyle' that of being a 'bag-man' or, the more publicly used term 'ostomate' -- makes me sound like some kind of strange pirate.... "Arrrrr... come here me Ostomatee!"
Back to the naming of my little friend... I decided to involve my youngest son. He has at least seemed marginally interested in learning what I am going through, what I am adapting to. So I discussed the naming process with him...
"Malcolm, how about you pick a name for my stoma? He will be with me forever, so he needs a name."
"O.K. Dad, I will think about it." he said, and then off he went to do whatever it is that hyper-creative 13 year old boys do...
A while later he came back.
"O.K. Dad. Let's call your stoma, Pedro."
"Pedro?" I say, "Why Pedro?"
"Well, since last year Cameron and I named the new tree out front, 'Lopez', I think we should name your stoma, Pedro!!!" Malcolm proudly announces. Giving me that look that says, 'Gosh, Dad you really just don't get it, do you?'
So, I - mistakenly - ask him, "How do you connect Lopez the Tree and Pedro the Stoma?"
He leaves me hanging, to ponder the connection with my obviously stupid adult brain.
Well, in the quiet of the afternoon, I ponder the origin of Pedro - the Stoma.
While I know that people live long productive, happy lives with a stoma, blah, blah, blah. At this point in my new journey, I'd rather just have it go away. I'd rather go back in time --- much earlier than November when I noticed - and ignored - earlier symptoms. Sometimes when I sit here, thoughts go through my mind. The what-ifs, the maybe-if-I-hads, etc., etc. I cannot go back and make it better, I cannot go back and make it go a way. All I can do is move forward.
Moving forward has been a challenge. Gradually I have been able to return to more normal activities. I have attended Art events, I have taken my dogs for walks, I have made long car journeys. Sometimes this has been easy, sometimes it has been a challenge. All the time I find myself forced to adapt to new situations.
I dress differently, I have a new bi-weekly routine for changing the bag. I am also experimenting with different 'bagging systems'. I am learning how to care for my changed body.
Everything changes. I can no longer sleep on my stomach, at all. I can no longer let my dog sleep on my lounge chair with me - something he does not understand - and from the look in his eyes - thinks is his fault. When I move I have to be careful of the bag getting caught, stuck or pulled off... Something I have not yet, but may yet experience. I have discovered driving and riding in a care is a literal and figurative pain in the ass - or well in what has become my ass. The stupid seat belt rides right over the exact spot where Pedro 'lives'. Again, something I will have to adjust to.
I will save the other aspects - the psychological and emotional issues of dealing with this new little friend for another post.... I'm tired and need to get some rest, Pedro and I.....
Not that I ever was before -- many of my friends would agree -- I am not normal. As of March 4th I no longer walk the same path as other people. According to my research 500,000 Americans have ostomies. I can't even find data on how many of these people are in my age group... under 50. So, my status as an oddity increases.
Here I am, trying to figure out where things will lead. Over the past two months I have been existing in some kind of weird limbo. Physically, psychologically, emotionally.
It is difficult to summarize, but I suppose the easiest place to start is with the physical. As I have mentioned in other posts, when someone says that you are going to have major abdominal surgery and that you will need a long recovery time... Simply BELIEVE them. Believe every word they say. I had thought that I would be one of the in-and-out patients. Go into surgery, spend a day or two in the hospital recovering, maybe a week or so at home with my feet up and then return to work and my regular life. Ha, what a joke! The sad, ongoing joke has been on me.
Instead the surgery has left me light one entire colon, one entire sphincter and one entire rectum. It has left me WITH a new orifice created on my stomach and a wound where my butt-hole used to be that is reluctantly healing itself closed - never to be reopened.
As if this wasn't enough I have just recently begun a round of chemotherapy and radiation treatment for what ever cancer they might not have grabbed with the surgery. But I digress - this post is about my new life with my little friend and how it is changing the way I approach things....
First, while I was in Cleveland I was informed by a cheery nurse that many people with a stoma give it a name... like a pet... Gee, how FUN!! What if I get TIRED of the pet? Can I give it to someone else? Can I take it to the 'stoma-shelter'. Can I cap it with a .38? No... this pet I am stuck with forever...
Oh, and this pet is not a fuzzy one which will look adoringly at you, let you take it for a walk, or catch frisbees...no... THIS pet has the fun job of oozing my poo into a bag -- hopefully into a bag and not all over the place, like I hear from some people.
It does make its own special noises... It gurgles and burps and sputters. And, unlike a pet, I can't 'train' it to go outside and do it's business three times a day. I can't train it to let me know when it is time to 'go' . I have learned that I can make a GUESS as to when it will go...as I have discovered during one particular 'appliance' change when I found my self, almost comically naked, catching my pet's business with paper towels with one hand and trying to wash, shave, dry and prepare a new appliance with the other. Had it not been happening to me, I might have found it funny. In the end, I managed -- which I am discovering is what this process is...all about management. Since I am stuck with this new 'lifestyle' that of being a 'bag-man' or, the more publicly used term 'ostomate' -- makes me sound like some kind of strange pirate.... "Arrrrr... come here me Ostomatee!"
Back to the naming of my little friend... I decided to involve my youngest son. He has at least seemed marginally interested in learning what I am going through, what I am adapting to. So I discussed the naming process with him...
"Malcolm, how about you pick a name for my stoma? He will be with me forever, so he needs a name."
"O.K. Dad, I will think about it." he said, and then off he went to do whatever it is that hyper-creative 13 year old boys do...
A while later he came back.
"O.K. Dad. Let's call your stoma, Pedro."
"Pedro?" I say, "Why Pedro?"
"Well, since last year Cameron and I named the new tree out front, 'Lopez', I think we should name your stoma, Pedro!!!" Malcolm proudly announces. Giving me that look that says, 'Gosh, Dad you really just don't get it, do you?'
So, I - mistakenly - ask him, "How do you connect Lopez the Tree and Pedro the Stoma?"
He leaves me hanging, to ponder the connection with my obviously stupid adult brain.
Well, in the quiet of the afternoon, I ponder the origin of Pedro - the Stoma.
While I know that people live long productive, happy lives with a stoma, blah, blah, blah. At this point in my new journey, I'd rather just have it go away. I'd rather go back in time --- much earlier than November when I noticed - and ignored - earlier symptoms. Sometimes when I sit here, thoughts go through my mind. The what-ifs, the maybe-if-I-hads, etc., etc. I cannot go back and make it better, I cannot go back and make it go a way. All I can do is move forward.
Moving forward has been a challenge. Gradually I have been able to return to more normal activities. I have attended Art events, I have taken my dogs for walks, I have made long car journeys. Sometimes this has been easy, sometimes it has been a challenge. All the time I find myself forced to adapt to new situations.
I dress differently, I have a new bi-weekly routine for changing the bag. I am also experimenting with different 'bagging systems'. I am learning how to care for my changed body.
Everything changes. I can no longer sleep on my stomach, at all. I can no longer let my dog sleep on my lounge chair with me - something he does not understand - and from the look in his eyes - thinks is his fault. When I move I have to be careful of the bag getting caught, stuck or pulled off... Something I have not yet, but may yet experience. I have discovered driving and riding in a care is a literal and figurative pain in the ass - or well in what has become my ass. The stupid seat belt rides right over the exact spot where Pedro 'lives'. Again, something I will have to adjust to.
I will save the other aspects - the psychological and emotional issues of dealing with this new little friend for another post.... I'm tired and need to get some rest, Pedro and I.....
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