I have had my ostomy since November. We have had a few ups and downs but I’m getting used to it. It’s now a part of my new normal and I had to accept it. I can’t be reconnected. But I’m also 80:years old and wouldn’t go through that surgery again. Had a terrible time, infection etc.
I’ve seen more different doctors since November than in my whole life.
Like you said it’s scary but thank god it’s not cancer. It will take time but you will get stronger and used to it.
Hang in there, it does get easier
@pidge32 I have a stoma that prolapses a bit, I think its not all that uncommon. It doesn't interfere with anything, though. It sounds like yours is more of a problem if its making it hard to do an appliance change.
Have you had a WOCN evaluate your stoma? Is it interfering with more than the appliance change?
@susanf8 we had someone show us when I was discharged but since then Home Health Care worked with us and my husband has the changing down pretty good
Thank you
@fckaiser Hi. I'v had my colostomy for about two years. It behaves well when I avoid being too casual about changing bags.
I notice you talk about "working hard and lifting heavy items" and I find these and other activities cause the pouch to drift around, sometimes covering the edge of the stoma itself. My stoma nurses are pretty helpful in general but they don't seem to want to discuss 'protection'. There are several systems on sale but, at their prices, I don't feel like experimenting with all of them.
Our two conditions are not the same (I've had about 1/3 of my colon removed due to bowel cancer) but it would interest me to find out if your activities also cause the bag to move about. Have you tried any forms of protection / cover?
@alyner I don't have a problem with my bag moving with any of my activities but I have the two piece and I'm able to lock it ,not sure where your getting your bags but I get them from comfort medical and I use coloplast 2 piece.
@alyner I don't have a problem with my bag moving with any of my activities but I have the two piece and I'm able to lock it ,not sure where your getting your bags but I get them from comfort medical and I use coloplast 2 piece.
My son does and he is 21 and he hates it! We did this because of chronic constipation and they said 6 months they will reverse it and now it's been 1.5 years and we are still not there. Is there any kind of support group for people around his age that he could communicate with?
@pidge32 I have a stoma that prolapses a bit, I think its not all that uncommon. It doesn't interfere with anything, though. It sounds like yours is more of a problem if its making it hard to do an appliance change.
Have you had a WOCN evaluate your stoma? Is it interfering with more than the appliance change?
I actually surprised myself the way I reacted to getting a colostomy. My dad had a bag; for years I thought "I hope I never have that!" But one night I had a perforated colon flare up and the pain made the decision for me. I didn't want to go to the hospital but had no choice, feeling as if a human simply could not survive this kind of pain. I had been having abdominal trouble for years and couldn't figure it out. Was I lactose intolerant? Was it the coffee? I became an expert on all the wrong things, and the flare ups would eventually subside, so I'd wait them out. But this particular Saturday night was the turning point.
This time, seven weeks ago, it got worse on day four, and I called my friend and asked him to bring me to the hospital. They put me in an MRI machine and I was in emergency surgery within twenty minutes. I easily surrendered to this doctor, the on-call surgeon I'd never met before.
For years I couldn't safely eat. I suspected everything, and it was slowly getting worse, I didn't know it, but my body was full of poison and on the edge of sepsis. I would have died that night had I not gone to the hospital.
I can't hate my colostomy. I actually love it. I love eating now. I love that I'm alive, that I can eat, have conversations with friends and family and have a future. I know everyone's situation is different, but for me, I went from "I hope I never have one of those!" to being extremely grateful the surgeon saved my life.
I'm only 63 and my life for the past three years felt like I was 93. Almost immediately after the surgery I could tell something major was "fixed," and in some ways felt stronger than I have in years. I have to be careful about everything and learn my way around the colostomy bag; I wonder if I'll ever go dancing again, which I always enjoyed. But I had no choice. It was the bag ... or death. For me, it's easy to be grateful.
This bag is a pain to deal with I suppose, but the thought never enters my mind. I think of it as an evolution and something relatively easy to deal with. Seven weeks now of constant chronic pain in recovery is nothing compared to years of pain of unknown cause always taunting me, never feeling safe eating, and having flare-ups that I could never describe other than to tell people it felt like I was going to die. I don't ever want to have to describe something like that again, and I feel strongly that this colostomy is a second chance at life.
In my opinion, perspective is everything. I'm glad to be alive, and wish the best to all those suffering.
I actually surprised myself the way I reacted to getting a colostomy. My dad had a bag; for years I thought "I hope I never have that!" But one night I had a perforated colon flare up and the pain made the decision for me. I didn't want to go to the hospital but had no choice, feeling as if a human simply could not survive this kind of pain. I had been having abdominal trouble for years and couldn't figure it out. Was I lactose intolerant? Was it the coffee? I became an expert on all the wrong things, and the flare ups would eventually subside, so I'd wait them out. But this particular Saturday night was the turning point.
This time, seven weeks ago, it got worse on day four, and I called my friend and asked him to bring me to the hospital. They put me in an MRI machine and I was in emergency surgery within twenty minutes. I easily surrendered to this doctor, the on-call surgeon I'd never met before.
For years I couldn't safely eat. I suspected everything, and it was slowly getting worse, I didn't know it, but my body was full of poison and on the edge of sepsis. I would have died that night had I not gone to the hospital.
I can't hate my colostomy. I actually love it. I love eating now. I love that I'm alive, that I can eat, have conversations with friends and family and have a future. I know everyone's situation is different, but for me, I went from "I hope I never have one of those!" to being extremely grateful the surgeon saved my life.
I'm only 63 and my life for the past three years felt like I was 93. Almost immediately after the surgery I could tell something major was "fixed," and in some ways felt stronger than I have in years. I have to be careful about everything and learn my way around the colostomy bag; I wonder if I'll ever go dancing again, which I always enjoyed. But I had no choice. It was the bag ... or death. For me, it's easy to be grateful.
This bag is a pain to deal with I suppose, but the thought never enters my mind. I think of it as an evolution and something relatively easy to deal with. Seven weeks now of constant chronic pain in recovery is nothing compared to years of pain of unknown cause always taunting me, never feeling safe eating, and having flare-ups that I could never describe other than to tell people it felt like I was going to die. I don't ever want to have to describe something like that again, and I feel strongly that this colostomy is a second chance at life.
In my opinion, perspective is everything. I'm glad to be alive, and wish the best to all those suffering.
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I have had my ostomy since November. We have had a few ups and downs but I’m getting used to it. It’s now a part of my new normal and I had to accept it. I can’t be reconnected. But I’m also 80:years old and wouldn’t go through that surgery again. Had a terrible time, infection etc.
I’ve seen more different doctors since November than in my whole life.
Like you said it’s scary but thank god it’s not cancer. It will take time but you will get stronger and used to it.
Hang in there, it does get easier
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2 Reactions@susanf8 we had someone show us when I was discharged but since then Home Health Care worked with us and my husband has the changing down pretty good
Thank you
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2 Reactions@alyner I don't have a problem with my bag moving with any of my activities but I have the two piece and I'm able to lock it ,not sure where your getting your bags but I get them from comfort medical and I use coloplast 2 piece.
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1 Reaction@catbaloo76
coloplast 2 piece and in 3 years only leaked twice...
I don't love it, but the alternative is undeniably worse.
Carry on!
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2 ReactionsIs getting a j pouch an option
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1 ReactionMy son does and he is 21 and he hates it! We did this because of chronic constipation and they said 6 months they will reverse it and now it's been 1.5 years and we are still not there. Is there any kind of support group for people around his age that he could communicate with?
@susanf8 now that I’m hoe and basically on my own how do I find a WOCN to help me?
@pidge32 is start with calling your colorectal surgeon and/or GI doctor, or the hospital where you had your surgery.
Another resource to Google search "WOCN near me".
Most hospitals WOCN see ostomy patients on an outpatient basis. Did you see a WOCN before your surgery?
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1 ReactionI actually surprised myself the way I reacted to getting a colostomy. My dad had a bag; for years I thought "I hope I never have that!" But one night I had a perforated colon flare up and the pain made the decision for me. I didn't want to go to the hospital but had no choice, feeling as if a human simply could not survive this kind of pain. I had been having abdominal trouble for years and couldn't figure it out. Was I lactose intolerant? Was it the coffee? I became an expert on all the wrong things, and the flare ups would eventually subside, so I'd wait them out. But this particular Saturday night was the turning point.
This time, seven weeks ago, it got worse on day four, and I called my friend and asked him to bring me to the hospital. They put me in an MRI machine and I was in emergency surgery within twenty minutes. I easily surrendered to this doctor, the on-call surgeon I'd never met before.
For years I couldn't safely eat. I suspected everything, and it was slowly getting worse, I didn't know it, but my body was full of poison and on the edge of sepsis. I would have died that night had I not gone to the hospital.
I can't hate my colostomy. I actually love it. I love eating now. I love that I'm alive, that I can eat, have conversations with friends and family and have a future. I know everyone's situation is different, but for me, I went from "I hope I never have one of those!" to being extremely grateful the surgeon saved my life.
I'm only 63 and my life for the past three years felt like I was 93. Almost immediately after the surgery I could tell something major was "fixed," and in some ways felt stronger than I have in years. I have to be careful about everything and learn my way around the colostomy bag; I wonder if I'll ever go dancing again, which I always enjoyed. But I had no choice. It was the bag ... or death. For me, it's easy to be grateful.
This bag is a pain to deal with I suppose, but the thought never enters my mind. I think of it as an evolution and something relatively easy to deal with. Seven weeks now of constant chronic pain in recovery is nothing compared to years of pain of unknown cause always taunting me, never feeling safe eating, and having flare-ups that I could never describe other than to tell people it felt like I was going to die. I don't ever want to have to describe something like that again, and I feel strongly that this colostomy is a second chance at life.
In my opinion, perspective is everything. I'm glad to be alive, and wish the best to all those suffering.
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2 Reactions@aliveagain welcome to Connect! It sounds like you have embraced your new lease on life.
As a 20+ year ileostomate I can tell you that I have danced many times since. I'm sure you will be able to as well!
Recovery is often two steps forward, one step back. There are some helpful articles in Connect; https://connect.mayoclinic.org/blog/ostomy/
What are you finding most challenging in recovery?
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