Hi Anne,
I read your post, and the replies of others, and I do agree that you have your "hands full".
My experiences with having an ostomy, and then being married to a man who had an ostomy, goes back more than 50 years.
I was 15 when I had my surgery (I'm 65 now), and received the best advice from a then 4th year medical student, who was on my doctor's service. After being sick for 3 years, I was used to "people" - parents, doctors, nurses - taking care of me. But after my surgery, Dr. Henry M. told me in no uncertain terms, when I asked him to "clean me up", that it was my body and my responsibility. Boy, did that shake me up!!! But I was young, and he set me on the right path. While still in the hospital, I learned to take care of myself, which was so difficult, because I was also in a back brace, with a disintegrated disc, and osteoporosis... That would go on for another year, so I had to empty and "change" my ostomy appliance in bed and on my back. And then after I "changed", I had to wash and clean out the "reusable pouch... ready for the next change. Where was my mother (or father)? They were there to help if I needed it, but I guess they received the advice that I should do as much as I could... on my own...
My story continues, as I married a man who also had an ileostomy, and although he was also independent, when he got sick and dehydrated, I became his nurse... when he really should have been in the hospital. Big mistake, but I loved him... and so I helped...
Miraculous as it was, we had two children, who both unfortunately inherited my Ulcerative Colitis and his Crohn's Disease. So there we/I were, taking care of two teens with medical issues.
The best advice that I felt I could pass on to them was to learn about their own body, their own responses, and eat what felt okay for them. I received a lot of criticism for that, but 12-14 year olds do know what they can tolerate, so when one came home from school and reached for a loaf of bread and a jar of peanut butter, that's what he had... I would have liked them to "eat healthy", but maintaining weight was more important, so I can't tell you how many cans of spaghetti o's we went through, and how many boxes of Twinkies... and Devil Dogs...
So, you may ask, what is my "advice"? 1) Try to back off some, and make your husband more responsible for finding the foods/calories he wants to eat to maintain his weight...
Chips, pudding, ice cream, etc.... My kids' doctor pointed out that "Pizza" was a perfect food, with all food groups, as long as the dairy didn't adversely affect the kids...
I know you can't pick up a grown man and make him go out and exercise, anymore than I could carry my 6' tall high school senior out to the bus... But when I pointed out the repercussions of his missing school (getting left back), he slowly took on the responsibility for getting up and getting out of the house. I didn't care if he slept the day away in the nurse's office, as long as he got credit for the day and got his homework assignments.
When I was sick as a child, my mother didn't let me stay in my bed clothes all day... even if I did go back to bed. Instead, I had roomy "lounging" outfits that weren't confining like jeans... but they also weren't pajamas. She also made me "make the bed". I could lay down on it and use another blanket, but it was a way to make daytime different than nighttime.
Oftentimes, we want to make our loved ones the most comfortable, and so we do more for them than we need to do... and it becomes a habit. Some sort of therapy might be helpful for you and your husband, as you both find ways to cope with the changes in your lives...
Today... I'm 65, in early retirement due to many medical issues. But I live alone and take care of myself, but do have help from many good friends. My older son still has Crohn's, but manages his attacks as he works as a middle school teacher. My younger son met and married an Australian gal, but a few years ago, she developed MS. After much research, she put them both, as well as their little boys, on a vegan/autoimmune supported diet. Jay is off medication for the first time in 17 years, and they are all doing well.
I apologize for the length of this... but I hope it will help...
PS... My 73-year-old ex-husband died two weeks ago... He had advanced kidney disease and was on dialysis, was an out-of-control diabetic with sores on his legs, needed a hip replacement, but couldn't have it done because of the sores. Ultimately, a systemic infection, along with a stroke and heart attack, caused his death. This was sad for my sons and for me, but for as long as I can remember, he was resistant to following medical advice and just did what he wanted... There's a lesson to be learned here... and although my life is not what I would have wanted it to be, I do the best I can with every good day that I have and am grateful to still be walking, talking, and breathing at the same time.
I read your post, and the replies of others, and I do agree that you have your "hands full".
My experiences with having an ostomy, and then being married to a man who had an ostomy, goes back more than 50 years.
I was 15 when I had my surgery (I'm 65 now), and received the best advice from a then 4th year medical student, who was on my doctor's service. After being sick for 3 years, I was used to "people" - parents, doctors, nurses - taking care of me. But after my surgery, Dr. Henry M. told me in no uncertain terms, when I asked him to "clean me up", that it was my body and my responsibility. Boy, did that shake me up!!! But I was young, and he set me on the right path. While still in the hospital, I learned to take care of myself, which was so difficult, because I was also in a back brace, with a disintegrated disc, and osteoporosis... That would go on for another year, so I had to empty and "change" my ostomy appliance in bed and on my back. And then after I "changed", I had to wash and clean out the "reusable pouch... ready for the next change. Where was my mother (or father)? They were there to help if I needed it, but I guess they received the advice that I should do as much as I could... on my own...
My story continues, as I married a man who also had an ileostomy, and although he was also independent, when he got sick and dehydrated, I became his nurse... when he really should have been in the hospital. Big mistake, but I loved him... and so I helped...
Miraculous as it was, we had two children, who both unfortunately inherited my Ulcerative Colitis and his Crohn's Disease. So there we/I were, taking care of two teens with medical issues.
The best advice that I felt I could pass on to them was to learn about their own body, their own responses, and eat what felt okay for them. I received a lot of criticism for that, but 12-14 year olds do know what they can tolerate, so when one came home from school and reached for a loaf of bread and a jar of peanut butter, that's what he had... I would have liked them to "eat healthy", but maintaining weight was more important, so I can't tell you how many cans of spaghetti o's we went through, and how many boxes of Twinkies... and Devil Dogs...
So, you may ask, what is my "advice"? 1) Try to back off some, and make your husband more responsible for finding the foods/calories he wants to eat to maintain his weight...
Chips, pudding, ice cream, etc.... My kids' doctor pointed out that "Pizza" was a perfect food, with all food groups, as long as the dairy didn't adversely affect the kids...
I know you can't pick up a grown man and make him go out and exercise, anymore than I could carry my 6' tall high school senior out to the bus... But when I pointed out the repercussions of his missing school (getting left back), he slowly took on the responsibility for getting up and getting out of the house. I didn't care if he slept the day away in the nurse's office, as long as he got credit for the day and got his homework assignments.
When I was sick as a child, my mother didn't let me stay in my bed clothes all day... even if I did go back to bed. Instead, I had roomy "lounging" outfits that weren't confining like jeans... but they also weren't pajamas. She also made me "make the bed". I could lay down on it and use another blanket, but it was a way to make daytime different than nighttime.
Oftentimes, we want to make our loved ones the most comfortable, and so we do more for them than we need to do... and it becomes a habit. Some sort of therapy might be helpful for you and your husband, as you both find ways to cope with the changes in your lives...
Today... I'm 65, in early retirement due to many medical issues. But I live alone and take care of myself, but do have help from many good friends. My older son still has Crohn's, but manages his attacks as he works as a middle school teacher. My younger son met and married an Australian gal, but a few years ago, she developed MS. After much research, she put them both, as well as their little boys, on a vegan/autoimmune supported diet. Jay is off medication for the first time in 17 years, and they are all doing well.
I apologize for the length of this... but I hope it will help...
PS... My 73-year-old ex-husband died two weeks ago... He had advanced kidney disease and was on dialysis, was an out-of-control diabetic with sores on his legs, needed a hip replacement, but couldn't have it done because of the sores. Ultimately, a systemic infection, along with a stroke and heart attack, caused his death. This was sad for my sons and for me, but for as long as I can remember, he was resistant to following medical advice and just did what he wanted... There's a lesson to be learned here... and although my life is not what I would have wanted it to be, I do the best I can with every good day that I have and am grateful to still be walking, talking, and breathing at the same time.
