Aging with an Ostomy: Seeking Advice from Fellow Seniors

Hello!
I am 66 years old, and I've had an ileostomy since I was 10 years old. I've had a long and gratifying career, a successful marriage for the past 37 years, raised two wonderful daughters, and am on the brink (finally!) of becoming a grandparent. In other words, I believe I've managed this whole thing pretty well, despite challenges along the way. Now, I am truly worried for the first time, and it's because I know that challenges increase with age. I feel terrible even thinking about asking my spouse to take on ostomy duties, should it become necessary — though I know that he would be a champ about it.
I'm seeking input/insight from any of you “seniors” as to how you are doing, any plans you have in place, etc. Thanks!

Hi Jamie, that is one of my worries, that I can't do my changes or care for myself. I had resection surgery a few years ago. The nurse came in with supplies to do a change, and as she was about to start, the surgeon came in and took over. He was so quick and efficient, and even checked on the stitches and staples, that I was totally amazed, and I think the nurse was relieved she didn't have to do it.

First of all, kudos to you! Not only for your years as an ostomate that you have taken in stride and just lived your life, but for your forethought in the years ahead. I have only had an ileostomy for 3 years starting at age 77. I was devastated at the time (the reason was a non-malignant cyst) but mentally fought the whole idea for almost a year. That changed with getting my normal health back, this website with shared insight (others' life journeys), product knowledge, and inventive ideas to adapt to new challenges totally changed my psyche.
My own journey was blessed by a spouse willing to accept this much more so than I was. He stood over the ostomy nurse during training and was again more able to handle it than I was... I actually turned white and the nurse thought I was going to pass out. He immediately followed her training and learned the procedure while I closed my eyes and could not watch. Then he actually assisted and advised the home health nurse provided by insurance who arrived every 5 days. This nurse, in our opinion, was not trained at all. Eventually, I "got a grip" and handled my new challenge on my own.
Lastly, like you, my future pops into my mind. I try to boot those thoughts out of my head with humor or positive self-talk. However, I do live in fear of losing the use of a hand, or some new challenge that old age presents causing me to depend on him to take over this daily responsibility. I know he will do it for me willingly although it would definitely not be my choice both physically and mentally, but such is life's journeys. I can only hope to accept these challenges that you have accepted since you were a child - bless you!
To answer your question, I have no plan in place for my future as I had no plan for emergency surgery for an ileostomy, 3 months later 3 heart stents implanted, and 2 months later a heart attack... life just happened and we were forced to deal with it. At 81 and 80 years of age, our only plan for old age, and I am not even sure when that starts as I always thought it was 60, then 70, then 75, and now I guess it's 80 or maybe not. My hubby has always claimed he is not old.
So our only plan currently rests in 2 boxes upon a shelf in our clothes closet clearly marked - Neptune Society. jb

@Justbreathe, thank you for your story and your encouragement... I appreciate both! All the best to you and your spouse as you navigate the coming years.

@ron, thank you. I agree that the range of ostomy skills among both doctors and nurses runs the gamut! Of course, they don't get as much practice as we do. :)

Do you have a medical condition that would impair you from taking care of your stoma? If not, remember it is a lot easier to empty a bag than to clean up after a traditional BM. At the UOAA meeting, I met people decades older than you who are active and continue to manage their stomas. I feel you are worrying about things that may never eventuate.

As I think about it, aging with a stoma is better than the alternative.

Jamie

I have to say your post about your story and journey is beautiful and very inspiring. Thank you for sharing and showing us all that nothing is impossible when living with a stoma. I am sorry I could not be of help with the question you are asking, but I just wanted to tell you and say thank you for sharing.

@Beth22, thank you for the kind words—they mean a lot!

Take care :-)

@GentleJohn, no, I don't have a medical condition that would prevent me from taking care of things, but things happen as we age. Everyone ages differently, and this whole bag thing is kind of important (!), so I'd prefer to do what I can to "think ahead," rather than being reactive.

Take care :-)

G-Day Jamie,

You're not old, I am 77 in December but in my mind I am still 21 and loving life. I also love my stoma as it was a life-saving operation, and I know it must have been for you also. Life throws a few things at us to keep us on our toes. The main thing is, after changing your bag, get out for the day with hubby and enjoy life to the full. "One thing about life, you won't get out of it alive." Regards, Iggie

Hi JustBreathe, I have shared your fears of wanting the ostomy changes to only be done by me. It took me 3 years to psychologically recover from the trauma of an ostomy, body image, stinky stuff, embarrassments, etc.

All I know is that my own partner, who is 16 years older, has taken it all in stride. I couldn't even look at it in the hospital when the wonderful ostomy nurses were teaching me and my partner what to do. I unfortunately had several other major surgeries as well as the endostomy one, and I got MRSA in all of my abdominal new surgery and emergency more drastic measures had to be taken to cut out all the abdominal areas infected. So my loving partner had to care for my wounds twice a day at home. Our love has not altered, and he always yells up to me if I want a hand when it's my day to change my ostomy bag. Sometimes it's a yes, my love, and sometimes it's a no, darling, but thank you.

When two hearts truly love each other, as you must know, these things don't put a dent nor a tarnish on that love. I know how fortunate I am to have this amazing person in my life. Every day it never gets taken for granted that I get to be loved with someone's entire heart where there is no place for me to need to feel humiliation, shame, or anything that makes me feel badly.

My best to you.

Hi Jamie, I wear a drainable pouch with a belt to hold it in place and need help when I change my appliance. I prepare everything, arrange all the bits and pieces in sequence, and get help to place the pouch, etc., firmly on my stoma as I don't have the strength to apply the necessary pressure. It takes a couple of minutes, if that. I try to do a bag change in the morning before eating.

Hi Jamie,

I share your concern. I have had mine for 50 years and I worry that I might not be able to look after myself as I age too. Especially now that I know I have the beginnings of age-related macular degeneration. This is a disease that can get progressively worse and can cause problems seeing with your central vision. If I can't see, I am extremely worried about how I will be able to even empty the pouch since I have an ileostomy and need to do so a few times per day and night. So, I just pray every day that there will be a miracle cure before I get bad. Plus, my hands are affected by arthritis so I also worry about how to manage working through this. But, having said this, I try not to focus on these worries and just take each day as it comes. Hope you do too.

My husband's colostomy surgery in 2010 was a result of colorectal cancer. I am proud that he accepted and manages his daily ostomy care, and I assist as much as he needs. Together we learned the daily care routine in the times before YouTube videos became the norm. He is very open to answering questions and doesn't seem to be bothered by curiosity. The experience I had was good preparation for the time when my sister later required an emergency ileostomy. I suggest you have an open discussion about your concerns and I really think treating the eventual need for assistance in a calm, no-nonsense manner will result in one or more who would willingly assist.

My husband had his ileostomy about a year and a half ago. He had a prior stroke which affected his dominant side. I'm a retired nurse, so I had no problem dealing with the ileostomy. In addition, this group helped me with many suggestions for various issues we ran into. My husband is 80, and I'm 74. I continually worried about what happens if I die first. We decided on moving into a continuing care retirement community and were fortunate to be able to do this. It was the best thing for us. No worries about my son scrambling to find help for his dad because he can move from our cottage to personal care.

Thank you for bringing this up. I have also had my ostomy for my lifetime and a husband of 36 years. I never for one moment thought about the future. Thank you for addressing this, something for my "what if" list.

Hi Jamie,

I've had Moana for 2.5 years now. I'm 59 years old, but I am single and live with my daughter and her husband. I used to be worried about an emergency because of arthritis in both shoulders and my right thumb, but my daughter assured me if I ever need help, she is okay with it.

We have home care for things like this if help is needed from outside the home, so my kids probably will never have to deal with it.

I'm sure there will always be someone ready to help if you need it, but it is special for the one you love to be willing to help you with something so intimate. I think you are lucky to have each other.

Terri

I think about this too. I'm single, so no help is readily available. But, we have to remember how tough we are.

We adapt, we make changes when necessary, ask for advise from places like this, and if I can get up out of this chair nothing is impossible.

When I had a fall and shattered my shoulder I thought I was done for. Turns out it's all doable with one hand and terrible eyesight. I don't think of myself as tough, but I damn well am. We all are. 

Thanks to all for hearing my story and reflecting on my questions…I do appreciate your input and support. 😊

Hi, this is in reply to Terry from Canada. She had mentioned shoulder pain and thumb pain.

It's a little bit off topic but somewhat related. I was wondering if you'd be kind enough to expand on your experience with this shoulder pain that you have and thumb pain. What kind of treatments you may be receiving because this is exactly what I am going through.

The shoulder pain brings me to tears. The thumbs, I believe they refer to it as a sausage digit, that's what it looks like, and I also have a pinky involved which looks like the Goodyear blimp.

So if you'd be kind enough to maybe private message me or maybe answer me here, I would really like to understand where you're coming from because the shoulder pain could be rheumatoid arthritis. We definitely know the thumbs and pinky are rheumatoid arthritis, and I also have what's called PSE psoriatic rheumatoid arthritis, and I've tried every treatment possible.

I think the only thing that works are steroids. Please let me know how you feel if you're comfortable discussing this with me. I'd appreciate it. Thanks, Tony.