![[United Ostomy Associations of America, Inc.]](https://www.uoaa.org/forum/uoaaxt/images/uoaa_header_board7.png)
Struggling to cope with ostomy
Moderator: Jimbob
Forum rules
Before posting, please read our Discussion Board Terms and Conditions and our Code of Conduct.
Before posting, please read our Discussion Board Terms and Conditions and our Code of Conduct.
Struggling to cope with ostomy
Hi I'm 32 and have recently had surgery to remove my rectum anus and large bowel so I have a permanent ostomy, since then I'm am struggling with it ,my confidence has gone it's affecting mylife to the point i constantly worry my wife will leave me for someone who isn't sick all the time and for someone who doesn't have a bag it is causing so much problems at home I never want to leave the house because I hate how even with clothes on I can see the bag. is there anyone else that's been through this and How did they cope. I have been to the doctors who just want to give me pills all the time.
Re: Struggling to cope with ostomy
Hey Greg
Know that you are not alone. Many of us have gone through the same issues and fears that you are experiencing. The first few months are the worst. I can remember crying to myself, thinking I don't want to go through life like this. As you learn to live with your ostomy things will get better, your confidence will come back and your wife will be there with you!
I know its cliché but, "it is what it is". We can't change the hand we've been dealt but we can make the best of it. You have a full life ahead of you and you'll be able to do everything anyone else can do.
Can I suggest you post this thread in the general ostomy section of the board. It will get more traffic there. Also, please let us know if it's an ileostomy or a colostomy. If you have a colostomy and they managed to save a good portion of your large bowel, you may be a candidate for irrigation which is about as close to "normal" as one with a colostomy can get.
Best,
Murph
Know that you are not alone. Many of us have gone through the same issues and fears that you are experiencing. The first few months are the worst. I can remember crying to myself, thinking I don't want to go through life like this. As you learn to live with your ostomy things will get better, your confidence will come back and your wife will be there with you!
I know its cliché but, "it is what it is". We can't change the hand we've been dealt but we can make the best of it. You have a full life ahead of you and you'll be able to do everything anyone else can do.
Can I suggest you post this thread in the general ostomy section of the board. It will get more traffic there. Also, please let us know if it's an ileostomy or a colostomy. If you have a colostomy and they managed to save a good portion of your large bowel, you may be a candidate for irrigation which is about as close to "normal" as one with a colostomy can get.
Best,
Murph
Testicular Ca 2007
IV Colorectal Ca 2011
Colostomy 2011
Irrigation 2014
Lung resection x2 2012,17
IV Colorectal Ca 2011
Colostomy 2011
Irrigation 2014
Lung resection x2 2012,17
Re: Struggling to cope with ostomy
Thankyou for your message it helps hearing from others who have been through similar problems
Re: Struggling to cope with ostomy
I was / is in your mental state however my colostomy is temporary (I hope). One thing I realized a couple of weeks ago is that while we know the bag is there and we can see it under our clothes, most people don't seem to notice or maybe they just don't care. Either way its fine with me. Regarding your wife, I can only say, try to talk and be honest with each other, that can be hard. I am coming up on 30 years of marriage and we have had our issues, but we always try to talk it out no matter how hard. We lost a child 21 years ago and at that point we made a pact to be honest with each other regarding these types of things. Hang in there.
Re: Struggling to cope with ostomy
Yeah, as a new ostomate, I'm trying to get used to my new normal too. Before I go back to work, I wonder about wearing the bag in my uniform and the random weird noises. I'm interested in some of the bag pouches and binders and wonder if others have opinions on them.
Re: Struggling to cope with ostomy
I'm 9 months into my colostomy,its permanent and i had Anesthesia amnesia so it was 2.5 weeks before i knew what had happened to me,yes it was a shock and it has taken me at least 5 months before it sunk in, this was for life,So to deal with it, i gave my stoma a name and all knew if i said" Alice needs etc." just what i was talking about, funny how fast family and friends now ask" hey hows Alice doing", Alice seemed to have gotten her own personality and moved in and i have adjusted to this.
It does take time, time is your friend right now,You will adjust because ,when we have no choice we will come to accept, and also be sure that people are more interested in what they look like then noticing a small bump in your jeans... No one notices unless you draw attention to it... There is life after all you have gone through this and it can be a darn good one,it just will take some time..
Best of luck, sassie
It does take time, time is your friend right now,You will adjust because ,when we have no choice we will come to accept, and also be sure that people are more interested in what they look like then noticing a small bump in your jeans... No one notices unless you draw attention to it... There is life after all you have gone through this and it can be a darn good one,it just will take some time..
Best of luck, sassie
Re: Struggling to cope with ostomy
Greg:
I just had surgery 3/4/19 and tell you that I am going thru everything you have said. My husbnad makes it a point that we get out of the house daily unless I am not feeling. Clothes is a big issue I had and when I put on while in the hospital, I broke down and still not seeing any improvement in the abd size around my waist. I still have wound that is draining and has staples. I am used to tucking in my shirts for jeans and going about my business. We have had to get some athletic type pants at Target as I do not have much with elastic waist band that will not be too tight but try to hit things with T shirt hanging down.
I hope things have improved for you since your post. Please share what helped you as I struggle daily and some days are really all day.
I just had surgery 3/4/19 and tell you that I am going thru everything you have said. My husbnad makes it a point that we get out of the house daily unless I am not feeling. Clothes is a big issue I had and when I put on while in the hospital, I broke down and still not seeing any improvement in the abd size around my waist. I still have wound that is draining and has staples. I am used to tucking in my shirts for jeans and going about my business. We have had to get some athletic type pants at Target as I do not have much with elastic waist band that will not be too tight but try to hit things with T shirt hanging down.
I hope things have improved for you since your post. Please share what helped you as I struggle daily and some days are really all day.
FAP S/P right colectomy 5/06, completion colectomy 2/10 & ileostomy 3/19
Gig' Em
Gig' Em
-
22Sunpuperwolf22
- Posts: 26
- Joined: 2025-09-05 19:04:23
Re: Struggling to cope with ostomy
Hi Greg5056,
I hope since your post in 2017, you have adapted to your ostomy surgery better. When I was initially told by my surgeon that I was going to have a permanent ileostomy in 2007, I told my Mom and the surgeon I would rather not be alive than live with a bag on my abdomen. My Mom told me that she doesn't want to age and lose her daughter at the young age of 46, before she is gone. She doesn't want to lose her first born child. I took that to heart and went through the surgery, sadly. When I woke up, the WOCN Nurse told me that some ostomates like to name their stoma, so I thought, I would name it LITTLE ILE, after ileostomy. It stuck with me and the nurses would all refer to my stoma as Little Ile. That was the first thing that eased my stress slightly after the surgery.
As I began to change my bag every other day, I realized that the surgery that saved my life since I became septic due to my intestines not functioning for 3 months, was such an unbelievable medical breakthrough and that in fact it was the result of WWII injuries which resulted in soldiers losing some of their abdominal organs due to combat, and I came to realize that it was pretty amazing that the medical field has come so far and has evolved and created ostomy products for their patients that have gone through such tremendous injuries in combat and saved countless lives. And it amazes me how far ostomy products have evolved, even since 2007 when I had surgery. So to me, I am a medical marvel in science. That is how I began to accept my surgery and the foreign bag on my abdomen.
Since then I have adapted very well to living with my permanent ileostomy. It doesn't bother me if my pouch slightly bulges under my clothing, since most people don't really notice or even really care. Most of my friends know about my ileostomy surgery, as I have never been afraid to share that with them. People are mostly curious about the procedure and really I have never had anybody take offense or feel uncomfortable around me after I told them I had that surgery. The only person that ever felt strange about the bag was when I shared it with a neighbor in the jacuzzi, (I know, pretty crazy, right?), as she had all the time had heard that ostomies smell really bad. I told her I never have an odor from my bag since it is fully sealed and the only time a smell would happen is if It was leaking for some reason. She also hadn't realized that those with ostomies can swim! Apparently she thought having an ostomy was a death sentence!! Totally opposite, in fact!
My life has extremely been the best life I have ever had after the surgery. I made life changing decisions after sugery like improving my physical health, which I never had thought of taking on since then. I went to college and university and earned 3 degrees since then as well. Living with an ileostomy has turned my life around 120% and I wouldn't ever go back to the life I had before, not being able to move my bowels for 1-2 months at time and suffering with extreme abdominal pain that would cause me to land in the ER because I couldn't breathe. So, hopefully my story will give you some hope that living with an ostomy can be very fulfilling and healthy, and that you can do virtually everything you did before surgery, and even more!
I hope since your post in 2017, you have adapted to your ostomy surgery better. When I was initially told by my surgeon that I was going to have a permanent ileostomy in 2007, I told my Mom and the surgeon I would rather not be alive than live with a bag on my abdomen. My Mom told me that she doesn't want to age and lose her daughter at the young age of 46, before she is gone. She doesn't want to lose her first born child. I took that to heart and went through the surgery, sadly. When I woke up, the WOCN Nurse told me that some ostomates like to name their stoma, so I thought, I would name it LITTLE ILE, after ileostomy. It stuck with me and the nurses would all refer to my stoma as Little Ile. That was the first thing that eased my stress slightly after the surgery.
As I began to change my bag every other day, I realized that the surgery that saved my life since I became septic due to my intestines not functioning for 3 months, was such an unbelievable medical breakthrough and that in fact it was the result of WWII injuries which resulted in soldiers losing some of their abdominal organs due to combat, and I came to realize that it was pretty amazing that the medical field has come so far and has evolved and created ostomy products for their patients that have gone through such tremendous injuries in combat and saved countless lives. And it amazes me how far ostomy products have evolved, even since 2007 when I had surgery. So to me, I am a medical marvel in science. That is how I began to accept my surgery and the foreign bag on my abdomen.
Since then I have adapted very well to living with my permanent ileostomy. It doesn't bother me if my pouch slightly bulges under my clothing, since most people don't really notice or even really care. Most of my friends know about my ileostomy surgery, as I have never been afraid to share that with them. People are mostly curious about the procedure and really I have never had anybody take offense or feel uncomfortable around me after I told them I had that surgery. The only person that ever felt strange about the bag was when I shared it with a neighbor in the jacuzzi, (I know, pretty crazy, right?), as she had all the time had heard that ostomies smell really bad. I told her I never have an odor from my bag since it is fully sealed and the only time a smell would happen is if It was leaking for some reason. She also hadn't realized that those with ostomies can swim! Apparently she thought having an ostomy was a death sentence!! Totally opposite, in fact!
My life has extremely been the best life I have ever had after the surgery. I made life changing decisions after sugery like improving my physical health, which I never had thought of taking on since then. I went to college and university and earned 3 degrees since then as well. Living with an ileostomy has turned my life around 120% and I wouldn't ever go back to the life I had before, not being able to move my bowels for 1-2 months at time and suffering with extreme abdominal pain that would cause me to land in the ER because I couldn't breathe. So, hopefully my story will give you some hope that living with an ostomy can be very fulfilling and healthy, and that you can do virtually everything you did before surgery, and even more!