elegantlion Posted October 22, 2014 Share Posted October 22, 2014 My dad has diverticulitis and the doctors are suggesting surgery (it's a recurrent issue, appropriate step). It's possible they would want to move to a colostomy bag. I get how it all works, but I'm looking for some stories, experiences about quality of life with a colostomy bag. He's freaking out and being a stubborn old man. I get that it would be a big change and a bit humbling, but it's better than the alternative of not choosing one. I may need to have a blunt conversation with him today and I need facts and stories too. Thanks. Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted October 22, 2014 Share Posted October 22, 2014 Not *entirely the same, but a friend just went through a temporary ileostomy (repair done yesterday!) She lived her life just like always (aside from the chemo, since this was for cancer treatment.) Work, friends, kid activities, even dating! She is the definition of awesomeness. My stepfather went through surgery for diverticulitis last year, but the doctors decided they could get by without the colostomy. They didn't know for sure until they got in there. Quote Link to comment Share on other sites More sharing options...
JFSinIL Posted October 22, 2014 Share Posted October 22, 2014 Just recovering from having my colon reconnected, spent the past four months living with the "poop bag" next to my belly button. Really hard to predict how easy or difficult life can be with a stoma...since mine was due to car crash my delicate lady innards were cranky all summer and Sammy Stoma kinda dictated my life. There are many different products on the market one can use, I liked the two-piece bags so could snap off and replace it if too foul to clean out, without having to pry off and re"glue" on a new base. I have read how some folks can manage to only poop once or twice a day into the bag, just like regular bowel movements. I never even got close to achieving that! If your dad does need a colonstomy, I hope it goes smoothly for him. Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted October 22, 2014 Share Posted October 22, 2014 Sorry - I don't really have a positive story either. My mom had a temp colostomy bag too. Because of issues with her hands she was unable to care for it herself, so the fam. stepped in. Mostly my dad and sister. I helped when I went out to visit. They had trouble finding the right bag that would stay on (it was always leaking). The issue my mom struggled with was that it makes noises. Yes, all those noises (rumblings and gas, etc.) from your innards and well.. farting.. it's all coming out the bag. I don't know if that ever settled down... and it may have had a lot to do with the meds she was on to keep things "flowing". She already wasn't able to get out much, but this made it worse because she was pretty embarrassed. Quote Link to comment Share on other sites More sharing options...
Lady Marmalade Posted October 22, 2014 Share Posted October 22, 2014 My grandmother had a colostomy bag for years (at least ten years, but I'm thinking it was closer to 20). Chrones disease did her in and mangled her insides. While I'm sure it took some getting used to, she was able to live an active and vibrant life. She loved to travel and still did once she had the bag in play. What I remember most was her appetite- it was pretty non-stop. That lady could EAT, and that was because the waste went into the bag much more quickly than if it had gone through the whole digestive system. Sure, she had to be mindful of the bag and emptying it, but it really was no different than needing to use a bathroom normally while out and about. What she loved most about having that bag was that it eliminated all the digestive issues she was having, so she was then able to eat anything and everything she wanted- and she didn't have to have an eye on the toilet at all times. It was completely freeing for her, and if cancer hadn't taken her, I'm sure she'd still be traveling and eating every delight she could find. Quote Link to comment Share on other sites More sharing options...
PrairieSong Posted October 22, 2014 Share Posted October 22, 2014 My mom had one for several years. Her care was complicated by her dementia, but she never had any serious issues with the bag. She just had to have help caring for it. A friend of mine had one for many years because of her Crohn's disease. The bag didn't prevent her from doing things she normally would have done. Whenever I visited her, I couldn't tell she had one. The only reason I knew was because she told me. Quote Link to comment Share on other sites More sharing options...
elegantlion Posted October 22, 2014 Author Share Posted October 22, 2014 Thank you, these stories are better than alternative at the moment. He's having another test today to determine the next course. He's active and likes to eat out a lot. Without the surgery, I think the dietary restrictions would be worse for him. Quote Link to comment Share on other sites More sharing options...
JFSinIL Posted October 22, 2014 Share Posted October 22, 2014 one dietary restriction I did have was no orange juice or masses of tomatoes - too acid, and my stoma stung when pooping :-( sorry if tmi, but considering the topic.... Quote Link to comment Share on other sites More sharing options...
elegantlion Posted October 22, 2014 Author Share Posted October 22, 2014 one dietary restriction I did have was no orange juice or masses of tomatoes - too acid, and my stoma stung when pooping :-( sorry if tmi, but considering the topic.... Not TMI, I glad it was only temporary for you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Zebra Posted October 22, 2014 Share Posted October 22, 2014 Sorry - I don't really have a positive story either. My mom had a temp colostomy bag too. Because of issues with her hands she was unable to care for it herself, so the fam. stepped in. Mostly my dad and sister. I helped when I went out to visit. They had trouble finding the right bag that would stay on (it was always leaking). The issue my mom struggled with was that it makes noises. Yes, all those noises (rumblings and gas, etc.) from your innards and well.. farting.. it's all coming out the bag. I don't know if that ever settled down... and it may have had a lot to do with the meds she was on to keep things "flowing". She already wasn't able to get out much, but this made it worse because she was pretty embarrassed. My dad had a really terrible time with his. He had both a colostomy and a urostomy bag, which probably made it worse. The bags dictated his entire life, but the colostomy bag was particularly bad. He could not live a normal life. The thing smelled, and fell off all the time. Sometimes he wasn't aware that it fell off. Not to mention the embarrassing noises. Also, it would fill with air, and make his shirt swell up and need to be emptied. He had a horrible time with them, and I can't even explain how heartbreaking it was to watch. But, it was literally that or die, and they prolonged his life for 2 years. My experience may be extreme. And I think most people will tell you it's better to deal with all the awful bag stuff rather than die. But what really upsets me is the doctors told him he could live a completely normal life, and it's just not true. I am sure some people have them and things aren't that bad, but my dad had issues with cancer and they could not make a good stoma with what intestine he had left. Sometimes during the surgery they are simply unable to create a good fit for the bag. I'm sorry if this is too graphic. Your dad is going to have to decide for himself. I wish the doctors had been more honest with my father. I am not sure it would have changed his decision, but it just would have been nice to know ahead of time what he was up against. My overall experience with doctors is that they tend to paint a rosier picture of things than they should. Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted October 22, 2014 Share Posted October 22, 2014 My dad had a colostomy from a failed colon cancer surgery. (He had colon cancer and they tried a new technique to attach tissues that were a bit too "unlike" each other and he ended up with gangrene because he was a stubborn old kraut who could not tell his female doctor how much pain he was in.) He lived with that for 7 years before succumbing to liver and pancreatic cancer. While he was at first despondent over having a bag that was likely to be permanent, he did adjust. He had very few problems with it. He had to buy larger shirts. He had this terry cloth band to wear over it when he went on vacation (he and his friends jokingly called it his "man bra" as it was above his navel.) I think he was able to swim with it. He had only a few times where it was a problem - gas causing the bag to explode. I think he knew when it was not going to be a good day and he didn't go out. I don't think he ever had a bad experience out in public. He and my mom traveled extensively so it didn't seem to hold him back. The broken jaw from a metastatic tumor was much more of a hindrance to him living life than his colostomy. Quote Link to comment Share on other sites More sharing options...
elegantlion Posted October 22, 2014 Author Share Posted October 22, 2014 Thank you all. We're here now, he may wait to get second opinion from his regular doctor. Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted October 23, 2014 Share Posted October 23, 2014 My dad had a really terrible time with his. He had both a colostomy and a urostomy bag, which probably made it worse. The bags dictated his entire life, but the colostomy bag was particularly bad. He could not live a normal life. The thing smelled, and fell off all the time. Sometimes he wasn't aware that it fell off. Not to mention the embarrassing noises. Also, it would fill with air, and make his shirt swell up and need to be emptied. He had a horrible time with them, and I can't even explain how heartbreaking it was to watch. But, it was literally that or die, and they prolonged his life for 2 years. My experience may be extreme. And I think most people will tell you it's better to deal with all the awful bag stuff rather than die. But what really upsets me is the doctors told him he could live a completely normal life, and it's just not true. I am sure some people have them and things aren't that bad, but my dad had issues with cancer and they could not make a good stoma with what intestine he had left. Sometimes during the surgery they are simply unable to create a good fit for the bag. I'm sorry if this is too graphic. Your dad is going to have to decide for himself. I wish the doctors had been more honest with my father. I am not sure it would have changed his decision, but it just would have been nice to know ahead of time what he was up against. My overall experience with doctors is that they tend to paint a rosier picture of things than they should. This. So true. That's been my experience. Quote Link to comment Share on other sites More sharing options...
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