For those of you that may have knowledge, I am curious how caring for oneself or another that has a j-pouch versus an ileostomy that is "older." For now, I can manage either easily (I'm 53), but I am curious if there is any opinion on self- or assisted-care for people (or me) when I'm 85 or 95 or 105.

Additionally, if one has a j-pouch, is surgery back to ileostomy well-tolerated for older folks?
Is a j-pouch generally easier to facility and how long can it last, life-long?
Should each of us with either a j-pouch or ileostomy expect healthcare issues as we age?

Thank you for your input.
Original Post
i would have thought issues with a j pouch when you are very old are incontinence as your sphincter muscles weaken.

i dont think anyone has had a j pouch yet for 50 years.

as for ileostomy i would have thought the main challenge would be changing the bag if you are bed bound, but then emptying the pouch would also be tough.

to be honest im not qualified to answer this.

i think its fairly straight forward to go from pouch to ileostomy, but not to actually remove the pouch itself...
Kinklehead,
We are the same age and trust me...my mind does not go there at all! I am not considering or worrying or even thinking about extended care facilities and old age...I am just trying to survive 'middle age'!
But, I do understand that it is a concern for some and eventually for many.
I have a k pouch and plan to be intubating and irrigating on my own until death-do-us-part or until at least some gastly disease crabs me by the feet.
Most pouches have not been long-term tested...although k pouches have been around for close to 40yrs the j pouches are a bit younger and neither has had a shelf-life tatooed unpon their hinneys.
I would think that if you are old and healthy that they are all good but if you are bed-bound and stuck with an untrained health-care giver that a natural exit pouch would be the easiest to handle.
With old, flask, wrinkly, lumpy or fragile skin an outside bag could become leaky and problematic and not all assitants know how to get a good seal on those things whereas at least if you become somewhat incontinent...well they are used to that.
Good Lord spare me the need to have to deal with this stuff and take me quickly in my sleep because I hate to have to explain a k pouch to a non-native speaker assistant!
Sharon
good lord..hoping something kills me before i have to deal with that..i`m with sharon..take me in my sleep please!!! i really can not get myself to that place for too long. requiring antibiotics.. i am 70 now have troubling pouch but have wondered at times if it will be the pouch complications that get me..yikes!!

maybe better idea to just live day to day and not go there..
I got my j-pouch at 47. Now, at 55, I would not do otherwise unless absolutely necessary. I had a 2 step process, so I had the ileostomy for about 4 months. Yes, it's do-able, but versus the j-pouch, I'll take the pouch and my associated issues versus dealing with the bag anyday. Just one man's opinion. I don't anticipate having any special issues with my pouch as I get older.

Good luck,

Mark
I think all of this is sort of like predicting the future, time travel, etc. The answer is, nobody knows for sure! I don't care how you poop, there are potential pitfalls once you land in a nursing home. So much depends on the staffing levels and individual skills of the staff. Custodial care is nowhere near what skilled nursing (what you get for rehab after a surgery or acute hospitalization, for example). Basically, custodial care is only as good as its weakest link.

Plus, nobody knows if they are going to be in a nursing home for any length of time or what shape they will be in when they get there. One thing for sure, they ALL know how to clean up poop. Ileostomy or not, poop happens. This is especially true when you have a series of varied people taking care of you and they all are not equally skilled or careful. So, there will be detached bags, leaks, and episodes of incontinence because someone could not get to you in time. I am not sure it matters which oriface it is coming from.

Your sphincters get weaker the older you get. Fact of life. Your gut slows down too. So, maybe for us that is a blessing, where constipation is a big curse for most of the elderly! Plus, your skin gets thinner and more fragile as you age. This might make changing appliances more difficult to do without tearing the skin. No perfect solutions there.

Plus, who knows what new options may be found to assist us as the decades roll on? Maybe adult diaper technology will be awesome!

So, my thought is to do what makes sense for YOU in the present and near future, and let the distant future take care of itself. I worry more about having too much junk in my house for my kids to sift through when I am gone!

Jan Smiler
I got my J Pouch at 29 and am now 51. I have also thought about the question raised by the OP. In my 22 years with the J pouch I haven't noticed any appreciable decline in function or continence. I do wonder about the future, but since I don't have a self-powered crystal ball it's only speculation. What I mainly wonder about is getting a cancer of some kind either in the rectal cuff or in the pouch, where I have had chronic inflammation for many years. I have also considered the possibility of losing the pouch and going to a permanent ileostomy as I get older. In the end I simply dismiss these thoughts from my head for there is no way of knowing what the answer will be. Maybe I will be hit and killed by a car at age 55 before any of these questions ever come to pass. This also occurred to me when I read the news about someone I knew in college who died in a car accident in Miami last week. At age 55. He was one of the 2 or 3 greatest soccer players in the history of my college and led the soccer team to the NCAA championship my freshman year. Life can be short and taken away in a moment!
Agree with CT.

I've had my J pouch since age 19 (I'm 43 now). My function overall is very good, and I'm continent.

I'm also an ICU nurse, and I imagine something else will get me before my pouch does.

Figure if things get tough in my elder years, I'll just have an ostomy formed, and let the pouch lie dormant, as long as it's not in bad shape.
Lately I often find myself thinking, "If I have three days or thirty years left on this earth, how do I want to live them and what will help me achieve this?" Then all of the peripheral issues of pouch vs. bag sort of melt away and the answer is much more clear. Those peripheral considerations (noise, smell, clothing, activity level, etc.) were causing me to think myself right into a corner, but that one question helped me make a decision.
Yep, you can think you have everything figured out and under control, but in reality, you don't have much control at all. Everyone in my family thought my brother was nuts, going into debt going on vacations to Europe and not planning for old age. He died suddenly of a massive stroke just shy of his 55th birthday. My sister-in-law was crushed, but grateful for all the wonderful years and memories they shared. The only member of my family that lived long enough to be in a nursing home was one of my grandmothers, and she had Alzheimer's, and couldn't remember past 30 minutes.

I'm 59 this summer, and my husband and I retired a few months ago. We wanted to enjoy our time while we had our health.

So, if an ileostomy seems good now, it is a good choice. If life is better for you without dealing with appliances, that's a good choice. By the way, very old people have ostomy surgery all the time. It is a pretty simple procedure. Pouch removal, not so much. But if you were old and frail, they would just do what was necessary.

Jan Smiler
I'm 84 have had my pouch 14 yrs and have no problem with my pouch, had more with the colitis. When I had colitis my husband cleaned up more poop that came out on the floor because I couldn't get to the toilet on time due to the pus, blood and Poop, now with my pouch he hasn't cleaned a bit. I'm a tap dancer performing for the rest homes now, only because I got tired of all the commitments you have with the big shows. So I figure my pouch will be in great shapeeven if I'm bed ridden, because I can hold my poop where when I have to pee I wanna go now, darn blood pressure pills.
Also when your old and decrepted they usally have you on medication and medicin really slows you up, so not to worry just keep asking for pills :-)
I heard a CR surgeon speak on this issue and his thought was that we would do very well in old age with a jpouch because our sphincter is used so often it maintains better muscle tone. However, on the flip side, my Mom is in Assisted Living and almost everyone there is using Depends.

Sue Big Grin
I am 74 and have had my J-pouch since I was 61. All is well but that is not to say that I don't have some leaking/seeping at times. I have also wondered if at some point it wouldn't be better to revert to an ileostomy....prior to becoming so debilitated that I couldn't care for myself with/without a J-pouch. If I were a care provider, I'd prefer a patient with an ileostomy. So easy to take care of someone whose effluent is contained in a bag than "smeared" all over her/his bottom! My thoughts, anyway. In addition, I didn't mind having an ileostomy at all!
I wrestled with this decision for over a year and have now decided to get rid of my pouch and go for an end ileostomy. I do have a very bad problem with leakage. I have had my pouch for 20 years. The original surgery occurred when I was 45 and I just now turned 66. I leak some every day and so therefore I have BB all the time and came to the realization that if I end up incapacitated that I would have a mess on my hands. My GI doctors recommend the surgery as well as the surgeon. This has been a hard decision to make, but I am at peace with it now. Headed for surgery October 3rd and would appreciate all the prayers and good wishes you can send my way.
I try not to think of 'old age' for the reasons that many have already cited. I've suffered from UC for 27 years, went into complete remission a couple of years ago on Vedilisimab, then after 12 months it just stopped working. Just turned 60, surgeon said I was well overdue. Had the first surgery on 9 Jul 2014, loop ileostomy. Must say I'm not a 'bag' person. Takedown as soon as I can arrange it.

We'll see how that turns out, but for me it is something to look forward to. I've had a number of bag failures which have been embarrassing and difficult to handle. Was in Melbourne visiting my daughter and got a leak at about 4:00am, couldn't get any of the baseplates/bags to stick. Ran out (I had taken a truck load with me just in case) and you cannot buy this gear in Australia other than through the stoma society (only open weekdays, it was a Sunday). Off to the hospital leaking all over the place and nurse gave me a box of convex bags. Worked, such an incredible relief.

Anyway, see surgeon at RPAH tomorrow to discuss takedown date, cannot happen soon enough, but that's just me. I have enough trouble worrying about the next couple of months let alone the next 20 years. Hope to be back doing 'stuff' by the new year although I know recovery and adapting is a personal thing, It took significantly longer than I thought for me to get back to anyways close to normal after the ileostomy. As someone commented, hardly surprising when you have half your insides removed. I'm optimistic (at this stage at least).
Good luck with your surgery. It is different for each of us and we all have to do what we feel we must. I had UC for 23 years before I got my j-pouch. Now after having my pouch for 20 years I am having too many problems to want to keep it. I pray that your surgery goes well and that you heal quickly. Please let us know how you are doing. Smiler
I'm 60 and going through that decision now. Have had jpouch 10yrs. It has been narrowing and causing me problems for the past year. Need to decide on quality of life with travelling and retirement. My surgeon says u could end up in hospital in another country with a big bill if staying with J pouch. Also have started back on low residue diet to subside cramping etc. So if bag gives better quality of life could be the best choice.
I too like to travel and have spent many a miserable day with leakage. I kept having to go back and have dilation for narrowing and having reoccurring fistulas. I am ready to give all that up and hopefully have a better quality of life. My surgery is 3 weeks from Friday and I will report back step by step about my surgery and recovery. You just need to do what you think is best for you and your life. I have a peace about mine and know this is in the Lord's hand. Good luck with your decision. Hope you don't mind if I pray for you and your decision.
Holly, best wishes and prayers! Thanks to all for the input -- especially those of you who are a bit older!

Regarding the "live every day" advocates, I'm with you 100%. I consider myself a pretty happy guy and very lucky that we have these medical options available to us. I guess I'm just fine-tuning!

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