Colectomy on Late Stage Dementia Patient Advice

Electra197878

Good morning - 

My father who is 83 years old has been suffering from significant colon issues and has been in and out of the hospital. Basically his colon is no longer functioning normally and he has significant fecal impaction. He's been in the hospital since NYE morning and none of the procedures that the doctors have tried have worked. 

My mother, sister and I are having a conversation with the doctor late this afternoon to discuss the three options he has. 1) He can go home without doing anything. The impaction is still there and he will have significant risk of perforation leading to sepsis 2) A partial removal of the colon but there is no guarantee that it will resolve the issues and he may have to be admitted to the hospital in the near future and 3) a full removal of the colon. 

The question I have is has anyone's loved one had a colectomy and how did they manage the post op? My father has late-stage Alzheimer's and not sure how he would handle the colostomy bag, tubes, etc. 

Thank you so much for any info or experiences you might have. 

Best,

Rima

Mint

Rima, sorry you and your family are in this tough position.   Not sure there is a right or wrong answer here.  Sort of what you guys are comfortable with. Question is what is causing this bowel issue.  Would ask the doctor if Alzheimer’s is the cause.  Know from on here that some people get to where they cannot swallow or bend their legs, etc.  So seems reasonable this could also happen.  This is only my thought, don’t have all the facts, think I would think about going home or to facility with hospice, monitor him and priority would be pain control.  Hopefully someone else who maybe has had experience with this will be along.

Take care

Sayra

MimiMinder

Dear Rima,

Good luck to you and your family as you make some important decisions. I will share my experience with you in hopes that it might help. My mother had colo-rectal cancer 8 years ago when she was still in the mild cognitive impairment stage of things. She is now 86 and her dementia has progressed.

After my mother was discharged from the hospital, a home health nurse came to teach her how to care for the stoma and apply/change the skin barrier and pouch. It was a lot for her to take in even with a semi normal functioning brain. And I needed to watch it all so I could help out. For a proud woman like my mother, it was hard for her to be that vulnerable and exposed.

My mother uses a two piece system. There is a skin barrier that attaches directly to the skin with adhesive. The skin needs to be dry and non-irritated for the barrier to be able to attach properly. Sometimes the area underneath the adhesive can get raw and bloody (usually if feces has gotten where it doesn't belong or if it was worn too long without changing - which has happened to my mother).

Then a pouch attaches to that. Super important that it seals all the way around. Now that my mom lives with me, I double check her seal each time she changes out the appliance. She uses a drainable pouch, so it can be 'burped' if there is gas in there and it can be emptied (by squeezing out the waste) and then closed back up. There are also single use pouches, but that seemed wasteful to her.

Emptying the waste into the toilet presents its own set of problems. There is often splatter, since it is more liquid than what you would expect. And there is the smell. Oh, man, is there the smell. We invested in an air purifier that attaches directly to the toilet. Push a button and it runs for 2 minutes and sucks away the horrible smell. Pricey, but worth every penny.

Even when you think everything is running along smoothly, there can be a 'bag failure' when you least expect it. Maybe the seal between the skin barrier and the pouch wasn't tight; maybe the bag didn't get closed up. Whatever the reason, you can find yourself dealing with a poop emergency. When traveling we had a spare set of clothing (not just the bottoms, but top and socks too because it can get everywhere), plastic gloves, wipes, paper towels, air freshener, lots of plastic bags to put the soiled clothing in and bag and double bag and triple bag...

We have a wound care clinic at our hospital and they have a nurse who specializes in ostomy care. She has been a tremendous help both on the phone and for in person visits when things weren't going well. You will need to know what resources are available in your area. We order our supplies for an on line medical device supplier. There is not a local option, so we need to be certain we have an appropriate amount of product on hand. But then again, you can't have too much, as medicare has specific guidelines about what they think is appropriate to have on hand before you can reorder. I would contend that no one making the rules has ever dealt with this specific medical issue. 

My final thought on the issue is that I asked the ostomy nurse what our other options were going forward, meaning when her disease progressed to the point that she could no longer manage caring for this on her own. I was stunned to learn there is no other choice. I assumed there would be something similar to a catheter, but the pouch system seems to be the only option.

If I can help in any other way, please let me know.

Thinking of you ~ Diana

Electra197878

Sayra wrote:

Rima, sorry you and your family are in this tough position.   Not sure there is a right or wrong answer here.  Sort of what you guys are comfortable with. Question is what is causing this bowel issue.  Would ask the doctor if Alzheimer’s is the cause.  Know from on here that some people get to where they cannot swallow or bend their legs, etc.  So seems reasonable this could also happen.  This is only my thought, don’t have all the facts, think I would think about going home or to facility with hospice, monitor him and priority would be pain control.  Hopefully someone else who maybe has had experience with this will be along.

Take care

Sayra

Hi Sayra - Thank you for your kind words. So according to the doctors part of the decline in his colon function is due to Alzheimer's and the rest due to old age. One of the questions I will be asking the doctor is about the survival rate of the surgeries vs. him going home and continuing to deal with the increasing fecal impaction and the pain it gives him. Each of the options has significant risks involved and his comfort and safety are the priorities. If he has the full removal and that will help his quality of life we would probably lean towards that but not sure if he would be ok with a bag or if anyone here has had experience with that and has any advice on how to make it an easier process. 

harshedbuzz

What Sayra said- this is a situation where there is no right or wrong answer. 

In your shoes, I would try to ask his neurologist if the issue with his digestive tract is dementia related. Dad had an opposite issue, food went right through him and he was losing weight dramatically in the late stages. His neurologist told us that this was a manifestation of the brain not controlling digestion effectively. Dad also developed silent swallowing issues around this time.

There have been folks here in the past who have managed a colostomy bags situation. It can be challenging because the PWD often doesn't recall why it is there and will attempt to remove it which is a common reaction to things like IV lines and casting. 

There was a retired physician in mom's support group who had similar decisions to make with his dearly loved wife who was in late stage dementia. She did not respond well to surgery and hospitalizations, so he elected to bring in hospice for pain management instead of treating her aggressively.

zauberflote

Rima, I don't have the kind of experience you are looking for, but I well remember the words of MIL's hospice nurse to the effect that sepsis is a painful way to die. I don't remember whether she was speaking of rampant cellulitis, or plugged up plumbing; MIL had both. 

You are caught among numerous rocks and hard places. Have you engaged a hospice yet? I think they might be able to speak from experience to you. Hospice is not for a person's very last days any more; MIL was on for 18 months, Mom for 8 months. They are so very helpful, knowledgeable, and comforting. 

Cobalt

Well this post tonight stunned me.  I just this afternoon heard from my son's family doctor that his severe, recurring constipation is likely a neurological problem where he may no longer be able to eliminate for bowel movements.  He said we might have to get to the point he will need daily enemas.  Wow, I just never expected this information.  I thought he would say there could be another GI doctor and tests that could be done, but this frank explanation I sure was not ready for.

I can imagine the need fora colostomy or partial for someone when they are in frequent danger of infection, bursting, or sepsis. It's been 5 hospitalizations for my son in the last two years for extensive laxatives and enemas done with CAT scans and x-rays to be sure he's cleaned out.  But no one ever mentioned to me that it's likely caused by neurological decline.  

Quilting brings calm

Cobalt-  I’m sorry that you got this news.  It’s been one thing after another for your son the last month or so.  

To the OP- I have no advice for you other than I personally think it’s ok to not put your LO thru  surgery and thru a total colectomy that will leave them totally  bewildered and frightened by the pouch and all it entails.   I wonder if he will even leave it alone or if he will be fiddling with it constantly because he doesn’t understand what it is for.  

M1

A technical point that might have implications: a total colectomy would mean that the ostomy is actually an ileostomy, where the terminal part of the small intestine (the ileum) is attached to the skin. Because a large part of the colon's function is to resorb water from the stool, an ileostomy is usually higher volume output than a colostomy and thus potentially even harder to manage. You should definitely ask about this. Personally, I would opt for hospice.  So sorry, it's a tough choice, but it sounds like you're dealing with end of life issues for sure. I would ask the surgeon what he or she would recommend for their parent.

abc123

This is a difficult subject. I just want to say that all of you are in my heart and prayers.

Michael Ellenbogen

I don’t know the condition of your love one but I saw this happen to my father who did not have dementia. If i was worse of today and had to do this I would not want this option and would prefer to give up living if I was no longer able to do much. 

Stuck in the middle

If it were my father, I would take him home and call hospice to make him as comfortable as possible.  I wouldn't want to live like that.

windyshores

We went through this two years ago. My mother had what at first seemed like impaction. Nothing worked and they then termed it obsruction. She looked like she was having triplets.

I spent two days talking to various folks, doctors, nurses, palliative care, hospice, GI surgeons and residents, family, deciding on hospice versus surgery.

I called hospice to come pick her up from the hospital and they informed me that they would do a vent and keep the nasogastric tube. Noone should just go home and die this way, they said. Very painful.

I sent them away and decided that surgery WAS the palliative option, meaning her best chance at avoiding pain.

Noone told us this at the time but the more up to date colostomy pouches are disposable. There is a wafer/barrier that you stick on, and that has a plastic ring on it. It has a hole in the middle that you cut to fit the stoma (piece of intestine sticking out). The pouches also have a ring that fits onto the wafer ring. It just clicks into place. I use a baby wipe to lubricate the ring so it slips on easily. Super easy. You just throw pouches out when half full or more- and they are not transparent so you don't have to look at anything.

Right after surgery there was gas and the pouches had to be changed often. Now it is twice a day. The wafer is changed 2-3 times/week.

People with dementia who have had a colostomy for a long time often can do the changes themselves. But for a person with dementia who has a new colostomy, I think someone else has to take care of it.  My mother is in assisted living. The aides do the pouches. Before COVID I did the wafer, but now a private nurse does it because I am not allowed in.

Surgery was risky but dying on the surgical table would be a blessing compared to dying of obstruction, even with hospice's vent.  The nasogastric tube was hell for my mother.  Ultimately we went with whatever option freed her of that.

No, she does not understand the colostomy. Probably a thousand times I have told her, even though I know it is useless.  But she is mostly fine with it and prefers it when really asked. No more mess in the bed or bathroom!  Early on she took it off once, and showed her stoma to housekeeping (!) but it scared her and she never did it again.

Thinks about what brings more suffering, and also whether this could turn into full obstruction. Impaction is no picnic either.