Hello everyone,
I have been an ostomate off and on for almost 30 years and just recently decided it was time to reconsider my options.
My first ostomy was due to Crohn's back in '83. I had a temporary ileostomy for just under a year and then had a reversal. I was 23 and full of...well, a lot of things, but let's just say I saw this as a freak accident. I blamed it all on being at a comedy club with some friends and drinking and eating too many nuts (I was diagnosed improperly in '79 with a peptic ulcer of all things but quickly got to the truth and changed my diet and took some meds but quickly got back to some sense of normal. I knew better but that night I just rebelled a little too much) but that one brush with death woke me up in a hurry. I had a blockage that ended up perforating and by the time I realized how bad it was and went to the hospital, I spent all of 5 minutes on a gurney before they rushed me in for emergency surgery. Apparently, I was one hour away from peritonitis (which basically means the contents of your bowel start eating away at your vital organs). Suffice it to say, it was a lesson well learned.
I was so thankful to have the reversal in '84 that I stopped drinking and changed my diet completely. For the next 9 years, I was back on course and became successful in many areas of my life. Unfortunately, 9 years later it all snuck up on me again. I was married with a 3-year-old daughter and a nice life. However, all the stress crept back in and put me back in the hospital.
It turns out the perforation this time was due to internal injuries and added stress on my system. I thought I had broken a rib or displaced it or something. In fact, I had pleurisy which basically means the fluid that protects your lungs from rubbing up against your ribs is not working properly. If you've never had it, the pain is hard to describe. It feels like someone beat your ribs in with a bat.
I went to the hospital not being able to breathe but quickly found out the real cause. I was back in surgery again for basically the same reason. I wasn't so lucky this time and to make a long and painful story short, after 5 unsuccessful surgeries in 4 months, I ended up being transported to a different hospital. I lucked into the best surgeon possible and after 10 days was home with Ileostomy 2.0.
This time I was told that all the plumbing was left intact for possible reversal but I should give serious thought to considering it a permanent solution.
So here I am 18 1/2 years later, at age 50, considering a reversal. My daughter is 21 and well on her way to her own life. My marriage only lasted for another 7 years after surgery. And thankfully, after a very fulfilling career, I am blessed to be in a situation where I work when I want, with whom I want, and answer to no one. Life is good!
But I have this nagging curiosity about life without my Ileostomy 2.0. I have never named it. Never considered myself a person with an ostomy. I changed my lifestyle to make it all work but never resigned myself to the fact that I would take my final breath while looking down at my appliance, at least with any sort of fondness or great memories.
Just this past week, I had the chance to visit my favorite surgeon in the world and thanked him for saving my life almost 20 years ago. I asked him simply if there was any chance to finally consider a reversal. I needed to know now. After a lengthy discussion about all the possibilities of why it might not work, we also discussed how it might work. The one line that sticks out from our whole conversation was his summation of my situation: "What you're asking is reasonable. Let's find out if it is possible."
He said we could start the process to make sure all the parts are still working properly (you all know the drill...scopes and various snapshots of the entire digestive system as well as blood work, etc...) and if all the evidence suggests a good amount of success is possible, then we can proceed.
I've gone for tests for years now and I know all the parts still work, but once they are all connected, as we all know, that changes everything.
I know it's a lengthy post. But I am being a little selfish here and using this as a way to sort this out in my own head, not to mention how cathartic this all is to verbalize my situation. I chose to post it here because after less than a month here, I'm convinced I'll get an honest and well-informed response to my one simple question.
Am I crazy to even be thinking about any of this?
I am very grateful for everything I have. Even though it's hard to admit sometimes, I am extremely grateful to have an ileostomy. I know life would be very different without it. But I can't help but think if I have one more chance to maybe live without one, should I take that chance now? Even if I only get 5 or 10 years and have to go through it all again and end up with Ileostomy 3.0 for the rest of my life?
I'm looking forward to any and all opinions/comments.
Thanks!
Michael
I have been an ostomate off and on for almost 30 years and just recently decided it was time to reconsider my options.
My first ostomy was due to Crohn's back in '83. I had a temporary ileostomy for just under a year and then had a reversal. I was 23 and full of...well, a lot of things, but let's just say I saw this as a freak accident. I blamed it all on being at a comedy club with some friends and drinking and eating too many nuts (I was diagnosed improperly in '79 with a peptic ulcer of all things but quickly got to the truth and changed my diet and took some meds but quickly got back to some sense of normal. I knew better but that night I just rebelled a little too much) but that one brush with death woke me up in a hurry. I had a blockage that ended up perforating and by the time I realized how bad it was and went to the hospital, I spent all of 5 minutes on a gurney before they rushed me in for emergency surgery. Apparently, I was one hour away from peritonitis (which basically means the contents of your bowel start eating away at your vital organs). Suffice it to say, it was a lesson well learned.
I was so thankful to have the reversal in '84 that I stopped drinking and changed my diet completely. For the next 9 years, I was back on course and became successful in many areas of my life. Unfortunately, 9 years later it all snuck up on me again. I was married with a 3-year-old daughter and a nice life. However, all the stress crept back in and put me back in the hospital.
It turns out the perforation this time was due to internal injuries and added stress on my system. I thought I had broken a rib or displaced it or something. In fact, I had pleurisy which basically means the fluid that protects your lungs from rubbing up against your ribs is not working properly. If you've never had it, the pain is hard to describe. It feels like someone beat your ribs in with a bat.
I went to the hospital not being able to breathe but quickly found out the real cause. I was back in surgery again for basically the same reason. I wasn't so lucky this time and to make a long and painful story short, after 5 unsuccessful surgeries in 4 months, I ended up being transported to a different hospital. I lucked into the best surgeon possible and after 10 days was home with Ileostomy 2.0.
This time I was told that all the plumbing was left intact for possible reversal but I should give serious thought to considering it a permanent solution.
So here I am 18 1/2 years later, at age 50, considering a reversal. My daughter is 21 and well on her way to her own life. My marriage only lasted for another 7 years after surgery. And thankfully, after a very fulfilling career, I am blessed to be in a situation where I work when I want, with whom I want, and answer to no one. Life is good!
But I have this nagging curiosity about life without my Ileostomy 2.0. I have never named it. Never considered myself a person with an ostomy. I changed my lifestyle to make it all work but never resigned myself to the fact that I would take my final breath while looking down at my appliance, at least with any sort of fondness or great memories.
Just this past week, I had the chance to visit my favorite surgeon in the world and thanked him for saving my life almost 20 years ago. I asked him simply if there was any chance to finally consider a reversal. I needed to know now. After a lengthy discussion about all the possibilities of why it might not work, we also discussed how it might work. The one line that sticks out from our whole conversation was his summation of my situation: "What you're asking is reasonable. Let's find out if it is possible."
He said we could start the process to make sure all the parts are still working properly (you all know the drill...scopes and various snapshots of the entire digestive system as well as blood work, etc...) and if all the evidence suggests a good amount of success is possible, then we can proceed.
I've gone for tests for years now and I know all the parts still work, but once they are all connected, as we all know, that changes everything.
I know it's a lengthy post. But I am being a little selfish here and using this as a way to sort this out in my own head, not to mention how cathartic this all is to verbalize my situation. I chose to post it here because after less than a month here, I'm convinced I'll get an honest and well-informed response to my one simple question.
Am I crazy to even be thinking about any of this?
I am very grateful for everything I have. Even though it's hard to admit sometimes, I am extremely grateful to have an ileostomy. I know life would be very different without it. But I can't help but think if I have one more chance to maybe live without one, should I take that chance now? Even if I only get 5 or 10 years and have to go through it all again and end up with Ileostomy 3.0 for the rest of my life?
I'm looking forward to any and all opinions/comments.
Thanks!
Michael