← Return to New Ostomy: Any help would be appreciated

zxyoma (@zxyoma)

New Ostomy: Any help would be appreciated

Ostomy | Last Active: Mar 27 4:15pm | Replies (58)

Comment receiving replies

My spouse is the patient and I wrote on his behalf.

The case is very complex. It involves treatment for prostate cancer over ten or so years that includes many types of treatment and annual testing for monitoring effectiveness and whether cancer spread.

Very difficult to outline even in a summary.

Most recently major 11 hour multifaceted surgery to correct fistula damage to the digestive system is what I refer to.

So many surgeries, treatments and the recovery which ultimately had him patient at Mayo hospitals for almost two months, November and December.

He is now at a point where he lost 80 pounds and is being treated for various problems related to the last surgery at Mayo.

I cannot say here all there is to say about how his particular situation has been managed and part of the reason is the number of medical services here and at Mayo that have been involved (that alone contributes to the outcome and difficulty trying to manage the next problem that pops up!

The complexity of this is mind boggling and explaining it in short is nearly impossible. He is still alive. Having lost over 80 lbs. and being nourished by tube and having two other tubes for elimination, he is just beginning to take a few steps, walking.

Mostly he is in bed.

He is 77, WAS previously pretty healthy. Former competitive swimmer as a young person. Very active. No drinking or drugs . Active.

MY COMPLAINT IS THIS: I feel that in his recovery at Mayo there was not enough attention paid to keeping him active and too much was a "choice" as to how much he moved and when he got past so many weeks and an opportunity to go to their physical therapy program they told him he was not strong enough!
When I think more could have been done to get him there. The people who made those decisions (how much he needed to do each day and what he ate every day) were literally left to him and us (his family, I am 80 and not medically trained)!

Now he's been in and out of local facilities where they came into his room and gave him sessions with physical therapy which now he can barely do, the opportunity to come home and have our daughter who's living with us and I (at a pretty agile, healthy age 80) to provide care to change his "bags" and provide care he was getting at the facility (where they said he could not stay any longer due to not needing the various care(?)!

Here we are, with him scheduled with a phone conference with the head surgeon from November, 2022. The discussion involves the next and final stage of what were three stages of treatments for the fistulas.

My complaint is basically that the lack of coordination and followup in my husband's case, have led to the current dilemma of his being almost totally bedridden and needing care that we might not be able to continue to provide at home. And THAT brings us to a place where I realize many people are and have faced: choosing to sell our home and he needing to get 24/7 care in a facility and me, 81 years old and needing to find a place to be where they offer both that care as well as care for well spouse? We do know of those types of places but have tried desperately to stay where we are and had hoped our daughter and family living here would be doable.

But because his care is at the level it is, we are not sure we can continue.

THAT in a nutshell is our situation.

The problem in so far as Mayo is concerned is that I do not believe we have gotten support and that communication with Mayo BEFORE this treatment was not clear about where we have ended up and about what our options might be in the event we end up here…where we are.

How much responsibility does a medical institution have in a situation such as ours in providing options for people with actual REAL SOLUTIONS?

Is it just not any better than "ok you are on your own and good luck" after they clear up any emergencies and stabilize you to the best of their ability so they can legally sign you out and set you free knowing what you will be up against and basically relieved to set you free even though they know you will be back?

Thats the best I can do to explain our situation.
I suppose it is pretty much not a new story. I pretty much get what the answers are. A lot of the answers have to do with what we did not do or what we did that might have contributed to where we are at.

My spouse has two bags and a feeding tube. One bag might be closed up though we were told time lines (increased due to all the complications) are now making it unlikely the one bag will be closed off.

And he will have two bags as well as a feeding tube, which he has likely due to the intubation during his long surgery on November 7th.

I will in fact present what I outlined here as my assessment of Mayo's management of my husband's case during the next appointment which will be a phone conference soon.
So this is my summary of events and my feelings about the situation.
I expect I already know what the responses would/will be if I were to present this to those involved in my spouse's case. These are my feelings, observations and not my spouse's. I also feel more could be done to explain before and after the fact what to expect. I found much online but there is a lot and not able to find time before the process of making decisions about diagnosis and the presentation of what the process to correct the problem involves.

Jump to this post

Replies to "My spouse is the patient and I wrote on his behalf. The case is very complex...."

@tapestry4245carton, this is complex. You've done a great job explaining. It sounds more like you need help from your Mayo Clinic care team than fellow ostomates like @jillian7's super kind offer.

I know I posted this elsewhere, but you should be able to get help from an ostomy nurse. Were you able to get in touch with an ostomy nurse at Mayo?

Also, were you able to join the monthly Zoom support group led by ostomy nurse at Mayo Clinic, Candy Boyes, R.N., RN-BC, C.W.O.C.N. last month? The group meets monthly on first Tuesday of the month from 4 to 6 PM Arizona time. The next meeting in next week April 4. Here's the link to join the Zoom Meeting https://mchealth.zoom.us/j/99659580974?pwd=VUdyZ0dQVmdxd3lCd0s4S0JzbnVvdz09

I'm confident that your team will appreciate your feedback. Getting this kind of information helps the team improve patient and caregiver education, which – as you point out – is really important before and during.