My 81 year old father had colon cancer surgery. They "cured" the cancer but my poor father is another story...

I had to use a temporary bag when I had some intestine removed. Even though it's gone now, it's something I'll never forget.

I absolutely agree, the medical system in the US is abysmal. And cancer treatment is no different in 2018 than it was in 1978. I was an RN specializing in oncology, I gave the chemotherapy. When my mom was told she had breast cancer, she asked me what would I do if it was me? I told her have the surgery, skip the chemo and by all means skip the radiation! She said that was what made sense to her. That was in 2008.

The radiologist shouted at her, “Do you want to live?!” when she declined the radiology treatments. This is the ‘racket’ that’s called medical care here.

I’m pretty well through with these ‘Doctor Gods’. When you’ve worked in the belly of the beast you know the tricks.

I’m very sorry for the condition your dad was left in. The entire medical system gets worse every day or doesn’t try to improve anything. Quite a few elders in my family have literally been done in by ‘treatments’.

I am not religious but if a religious person would see my father he/she would pray for his gentle death in his sleep. He looks terrible confined in his bed. He is barely conscious. He recognizes me but he has no sense of time and surroundings. Still, his internal organs liver, kidney and heart are working fine. He can go on in this state for years on end. That is very very cruel. So unlucky for him.

My father was hospitalized for 17 days. For lung infection. Then the lungs cleared and they didn't know why the CRP was still high. They have been giving him very strong antibiotics since two months. Finally the last two blood test showed significant drop in CRP. He is back in Nursing Home. My mother is there too. They are in the same room and they don't recognize each other. My mother has the mental capacity of a 2 year old (has AD), my father's mind is in a dream land. He moans every time he is touched and repositioned. I feel sooo sorry for him. Yes we cure the infections with hardcore antibiotics, we put nutrition in his stomach but he is miserable. I paid more than 6000 USD for my fathers expenses in the last two months. That is insane amount of money for me, for my country. That is about my 1 year rent. I am so worried about finances. I am not rich, I keep paying for mom and dad. Something has to change soon...State NH is not an option because they have a little income of their own and there is a waiting period of 2-3 years. There is simply not enough state facilities. I exhausted every option for now. I have depression and anxiety. I take medication but medication does not magically makes them disappear. I don't have an husband, nor a child, nor a sibling...My future seems so bleak, I don't enjoy really anything. Just existing. I smoke like a chimney. I know I shouldn't but I don't have the will to stop. Doing my never ending duties. Even if they are in NH there are so many things to do for them (paperwork for their never ending medicines, doctor appointments for my mother, blood tests, medical supplies, applying to court with my attorney as they are declared incompetent, trying to empty their house and getting ready to rent for some additional income) all very stressful for me. I want to cry, I want to run away, I want this to end... I want this to be a bad dream . I just want to wake up.

Hugs. I know it's not the same, but here we are whenever you want to vent.

I have a few good friends and two cousins. Sometimes I ask them for favors, help. But there is nobody to share the burden with me. I am soooo stressed.

Missdenwo are you completely on your own in this or do you have other family members or friends with you?

They called me from the NH. CRP back to 58. They are changing the antibiotics. They sounded very surprised. We will see.

Missdenwo: Again, I am so sorry about your father. It is so very hard for a daughter to see her father in such a state. One day, my father will be bedridden, unable to swallow or move his limbs, and I so dread that day and the days afterward. His is slowly progressing toward it, and it has torn my heart to pieces to see the inexorable decline of my once strong and loving and brilliant father. For you, it has happened suddenly. I cannot know exactly how you feel, of couse, only imagine -- all I can know is it must hurt terribly. It's good news they have found the right antibiotics and I hope he will improve once they have done their work. Do try to get some rest while he is in good hands at the nursing home.

Subduedjoy: It sounds like you are really on top of your disease -- I am so sad you have it all, of course. IBD and UC are cruel diseases and incredibly, er, not fun! I really admire your attitude and strength -- inspirational!

My brother has UC and one of my closest friends since high school has suffered from IBD these many years. I was re-ordering the butyrate for Dad this morning and saw those reviews from IBD patients and thought of you, so felt compelled to share. I give it to Dad to help eradicate H. Pylori, and when I saw those reviews, I realized it might have something to with why Dad's "sudden pooping episodes" (diarrhea down the legs, into the shoes, all over the floor, etc.) had significantly decreased after starting the butyrate. So I went into to PubMed and saw the research behind it. He's had this problem ever since being on antibiotics so long for the infection in his foot. I tried everything, including prebiotics/probiotics, etc., with no success, but maybe the butyrate has helped, and if so, I'm most grateful! I hoped it might help you, too, and sorry it did not, but glad you have found some things that do.

missdenwu, yes. You're right. Most people will assume it was age because your dad is over 80. I'm angered by what happened to your dad, but I also understand not having the time, energy, or money to do anything about it. Sorry about what happened.

Laurellel, thanks for asking. Inflammatory bowel disease is a complicated disease with many causes, so there are many things that might help. Yes, I take a lot of supplements and have tried butyrate. I find that supplements (even probiotics, digestive enzymes, and anti-inflammatories) all help a little bit, some more than others, but they haven't helped that much. For me, diet, fecal transplantation (FMT), and Flagyl have had the best results, most likely because I probably have ulcerative colitis from having been on antibiotics for many years. Doctors used to give them out like candy.

I do find it interesting that while antibiotics gave me this disease, Flagyl put one of my flares into remission. What has hurt me has also helped me.

Subduedjoy, have you looked into sodium butyrate? If not, do a PubMed search on butyrate colitis and butyrate colon cancer. I order it for Dad from Amazon and reviewers there were raving about wonderful it has been for their UC and D-IBS.

Hello dear caregivers. Thank you for your replies, support and hugs. I send hugs to all of you.

My dad in NH. My mom lives in her home with a caregiver. This arrangement is very expensive for me. I am very stressed about money also!!!

Anyway...

I must say that colostomy bags are the least problematic issue at the moment. In my opinion they are better than changing diapers and it is much cleaner and the genital area does not get irritated.

My father's CRP fell to 13 from 76. The doctor from the NH says he will continue to improve as they have found the right antibiotics. Still I am very sorry for dad. So sorry that my heart aches.

My mom has Alzheimer's. She is like a 3 year old. But, she can walk, eat... She goes out to take a walk with her caregiver. I don't feel so sorry for her.

About the "botched" operation of my father. I didn't pursue any complaints because.
-first of all I am really tired, I don't have the energy
-it is extremely hard to prove medical wrongdoing (if the doctors did not amputate the wrong arm, like something very obvious)
-all doctors protect each other
-my father is old and everybody can use that as an excuse
So here I am telling the story to you dear caregivers, trying to relax a bit. (In stead of making a formal complaint.)

I send my best wishes to all of you

missdenwu, 

Yes, low blood pressure is to be expected because the colon is responsible for absorbing water and electrolytes (among other things). If the colon isn't functioning, then it won't be absorbing water and electrolytes, and blood pressure will fall. 

Yes, antibiotics can cause diarrhea. The feces should also be more watery before entering the colon. So if there's no colon, then the feces will tend to be more watery.
  

Countrymouse,

I guess a bag is no big deal for those who have IBD, like me, because:

When I have colon flareups, I

am bleeding like I have a heavy period every day for more than a year; only, the blood is coming out my butt.

am having brown liquid diarrhea coming out of my butt for six months to over a year.

am going to the bathroom 30-40 times a day because I can't hold anything in.

am having to do mesalamine and steroid enemas every day as instructed by my GI's.

...

And I guess cleaning a bag is also no big deal because:

When I have colon flareups, I

am getting the toilet covered with blood and brown liquid diarrhea because that's just the way it comes out.

am not always making it to the toilet, which is only 10 feet away from my bed, so sometimes the brown liquid and blood will just run down my legs to the floor before I even get to the bathroom.

There are many Youtube videos showing what it's like to have a bag. 

Countrymouse. I read the whole story. The main reason people get their colons taken out is that their colons are either about to burst or their colons are obstructed.

It was a botched surgery.

It's far easier to change a colostomy bag than to change a diaper. It's less messy too. There are Youtube videos showing the process. 

It's possible that something went wrong with the anaesthesia; intubation can cause problems with swallowing reflexes; and it's also possible, depending on what had to be removed from where and how destructive the process was, that infection from bowel contents or damage to other tissues caused other harms.

Have you had an opportunity, would it be possible, to get the surgeons to sit down with you and the operation records and explain in full anatomical detail exactly what was done, including a clear description of how invasive the cancer had been? They owe you that at least, surely. And seeing as your authority to make decisions on your father's behalf is so constrained under your country's law, they also have to explain how they came to their own clinical decision - whether to you or to anybody else reviewing your father's care.

Is there a formal complaints process you can use?

Hello Missdenwo
Just checking back in. How did your visit go with your dad? Did you find him continuing to improve from the infections? How were his eyes?
How is your mom today? Do you care for her in your home or does she live elsewhere? Do you work Missdenwo outside the home?
It was sobering to read that you are alone with your familial circumstances.
We here on Agingcare.com send you a collective hug and wish for you every comfort available.
We are all reminded that as much as we advance in science we are humbled in the end with the realities of life and the frailty of the human body. Sometimes it’s ours to bear witness. The path looms large.
When I read the following, I thought of your father and the age old realities of life. Sent to me in a text from a friend.

From my book - SAVED BY A POEM

“Very truly, I tell you, when you were younger, you used to fasten your own belt and go wherever you wished. But when you grow old, you will stretch out your hands, and someone else will fasten a belt around you and take you where you do not wish to go.” John 21:18

Note: My father could walk and eat before the operation. After the operation he can not move his legs or swallow. Nobody made a good enough explanation. I think his brain did not get enough oxygen during the operation due low blood pressure.

Hello dear caregivers. Thank you all. Every single one of you understand me better than my old/best friends. Our common experiences connect us across the world and I am so grateful for it.

I have learnt that in my country you can reject treatment for yourself, but you can not reject treatment for somebody else: somebody you are guardian of, your parents, your child etc.

Yesterday I went to see my dad. The nursing home is so far away. I have to pay USD 15 to get there and return which is a lot for me. My father was sleeping. I poked him a little but he did not wake up.

I saw that in stead of getting his food through PEG, he was getting it through IV. They told me that he had diarrhea because of the antibiotics. I am going to pay a lot of extra fees this month to the nursing home because of his infection treatment. Money is a concern too. So I am stressed about money also. This seems like a marathon and I don't know if I have the energy and recourses till the end.

Once again thank you all.

SubduedJoy, if you read the full story you will see that the OP's father had colon cancer so long-established and advanced that his colon "was about to burst."
The surgery was carried out to remove an obstructed, maybe necrotic, bowel. Cancer this advanced will likely have had other impacts on the poor elderly gentleman; you are inferring from "he could walk" that the poor man was absolutely fine before the surgery, which is a bit of a stretch; and to assume that the devastation post-surgery was due to negligence rather than disease is far too great a leap.

And, by the way, for a person in his eighties an external colostomy bag can be an excruciatingly big deal. Clearing up the bathroom after him isn't exactly a fun way to spend the afternoon, either. Good for you for educating yourself about the possibility and taking a practical approach, I applaud that; but I wouldn't be so blasé on behalf of my frail, ill elders.

I will very happily support IBD Day this coming weekend and completely agree that far more research is needed into gut health, the role of the gut and the relationship between it and the rest of our physiology, all round.

Missdenwo, my heart goes out to you. I can only repeat what others have already said about general anesthesia worsening dementia, and infections, too, and share my own experience.

My Dad is 86 and suffers from bvFTD (Frontotemporal Dementia, behavioral variant), a heartbreaking disease. Seven years ago, when he was in the early stages, and before the bvFTD diagnosis, he had to have emergency surgery on his foot to remove an infected bone. His dementia and motor functions were significantly worse after the surgery, but he returned back to where he was after a few months. I later learned from the wonderful community at the FTD Support Forum that general anesthetic often causes a severe worsening of dementia, and that some patients return to baseline after six months, while others do not.

Since then, I have been able to steer clear of general anesthetic for him (thanks to an amazing heroic surgeon who removed a horrible fast-growing skin cancer using only local anesthetic), and deciding to forgo colonoscopies and surgery for small gallbladder stones. Skipping the colonoscopies was a tough decision, given that he had had several polyps removed before the FTD diagnosis, and I may come to regret it. Still, the thought of the anesthetic having a a good chance of severely worsening his dementia, possibly permanently -- yes, a hard decision. It was a relief his doctors agreed, but I still fear he might get colon cancer and end up like your poor father, when a simple polyp removal would have prevented that agony. I make sure he eats a healthy diet with plenty of fruits and vegetables and give him vitamins and supplements proven in clinical trials to reduce the risk of colon cancer, and can only hope for the best.

I don't want to give you false hope, but there is a chance your father may get better with time and after the infections are cleared up. Infections can cause delirium in the elderly, especially those with some form of dementia, but it goes away once the infection is cleared up.

Having said all that about doing my best to avoid general anesthetic for Dad, had I known at the time that Dad had FTD and the risks associated, I would still have gone ahead with the foot surgery. It was a life-or-death situation. Yes, in hindsight, I can know it was the right decision then as he returned to baseline dementia-wise after a few months, but what if he had not? Please stop beating yourself up over your father's surgery. You made the best decision you possibly could at the time, not being able to see into the future. Your father may or may not get better and have a better quality of life, but there is a chance he might. You have done a wonderful job of seeing your father is getting the best of care. He is Blessed to have such a good and loving daughter.

My angelic grandmother died in screaming agony of an impacted colon. Yes, she was given the maximum amount of painkiller, but to no avail. The surgeon told her children that yes, he could operate, but she would not survive the surgery with her weak heart and would die in the operating table, so they decided to spare her the surgery. Your choice was different, as your father could and did survive the surgery. Your choice was between a screaming death of agony and a possibly okay life for him. No, his life is not okay now, but you could not possibly have known that and it just might become okay yet, given time, or at least tolerable with moments of enjoyment of life.

Even if his condition does not improve, the general anesthetic simply "fast forwarded" his Parkinson's and he would have ended up as he is now, only later. The end stage of Parkinson's (or FTD or Alzheimer's) is never pretty but rather utterly heartbreaking, and my father will get there, too, surgery or no, sooner or later. Yours will have just got there sooner in the worst case. I do hope for the best case for your father, that he will get better, though. It is possible. Even if he does not, you will have done the best humanly possible. That is all any of us can do.

Countrymouse. If you read Missdenwo's original post, then you would have seen that her dad did not have these issues before the surgery. I have ulcerative colitis and my risk of getting colon cancer increases over time. I'm at a 23-45% risk of having to get my colon removed sometime during my lifetime. It could very well be in my 80s. I almost lost my colon a couple of years ago during one of my severe colon flareups. The fact that Missdenwo's father is paralyzed has nothing to do with Missdenwo's dad's age or health at the time of the surgery and everything to do with the surgeon's incompetence. Who knows what else went wrong during the surgery due to the surgeon's incompetence. If the surgeon had been competent, Missdenwo's father would have recovered from surgery with an external bag. No big deal. Many people who have a colostomy bag are able to live full lives. 

May 19 is IBD day. Please everyone spread the awareness. There is so little understanding of IBD.

I'm Racing in Orange for the Crohn's and Colitis Foundation. You can donate at my Race In Orange page, which is on the Crohn's and Colitis Foundation's website. 

online.ccfa.org/goto/JoyEllen

My Mother is 87 and has leukemia. When she went through quemotherapy last year, She became "mentally absent", her memory loss increased so much and she lost all ability to be "present". Doctor said it was a side effect called Quemo Brain. I suppose that some treatments are so hard for their frail bodies that It' s worse than the illnes itself. I know it is heart breaking. Just try to give him some quality of life now.

I'm so sorry about your situation, and am sending lots of virtual support. Keep coming here, it's an amazing resource.
I echo what others have said: not sure how it works where you are, but getting medical power of attorney for your Dad and advanced directives are really helpful if possible at this stage, especially if he is saying things to you about wanting to end his condition. Trying to get him to state these wishes to others, witnessing, is also helpful. 
I highly highly recommend the book someone mentioned, Being Mortal by Atul Gawande, for any of us facing these end of life situations, hopefully much in advance. It's written by an MD, a surgeon in fact, where he really gets at the over-medicalizing of death and how to have conversations with family and caregivers and medical providers about it. It may still be helpful for you for conversations coming up and even just for feeling better about holding your ground when needed. 
My own recent experience with my Dad's decline over the past few years and acutely in the last few months of his life and dying were immensely helped by having read it and avoided things like putting a defibrillator into Dad who had end-stage of at least four other major diseases and was clearly ready to be done. My cousin, a 40-plus year cardiologist who recommended the book to me, said that even she, with all her clout, felt like other providers tried to pressure her into more care for her parents who had been very clear about their end of life decisions. She coached me to ask questions like: "will this (med/procedure/therapy) improve his overall degeneration" "what are some of the complications that might arise?" will this aid quality of life or not and how exactly? To say things like: "We're opting not to have that procedure at this time. He is really only interested in having comfort measures, no more interventions." Ultimately YOU are the closest one to your Dad and make decisions on his behalf if he is not able to. In essence you are serving as his hospice advisor. 
I'm so sorry you don't have direct access to hospice services, it was such a huge help and they are very skilled in getting the other medical providers to back off with anything besides comfort measures, a real challenge in nursing homes where that is their normal course of treatment, with probably some concerns around their liability, and they may have their own conflicting feelings about letting people "go in their own way." Perhaps it's possible to get in touch with hospice directly online or by phone to see if they may be able to provide coaching/support/resources, even if not available where you are. 

Best of luck to you and like everyone says: if he is safe where he is, take a break for yourself! Just rest, get with people who are fun and supportive, and attend to your own routines as much as possible. You don't have to feel guilty about that at all, you need to be clear to assist where you can and ultimately, you still have a life, are doing the best you can with integrity and things take their course.

Subduedjoy, you put your finger squarely on the issue and then ignored it.

The OP's father would certainly have died without the surgery. Probably not in much pain, in fact; he would have been given powerful pain relief, become septic very fast, fallen unconscious and passed away within days.

The question is, would that have been a worse outcome *for him* than what he is facing now?

Famously, an elderly gentleman was congratulated on his birthday and asked "so, how does it feel to get to ninety?" To which he drily replied: "better than the alternative."

The issue is that there are circumstances in which staying alive is *not* "better than the alternative." In all societies, deciding when that has become true for an individual is a complex ethical challenge. In some societies, even thinking the thought is taboo.

Colon cancer is extremely deadly. So, yes, your dad needed surgery. But surgery is risky, especially for the elderly. Your dad may have gotten insufficient oxygen during surgery. That could explain his dementia.

Still, becoming paralyzed is not a normal complication of colon surgery. It sounds like there was extensive nerve damage done to your dad. The surgeon should be held accountable for this so that s/he doesn't do this to anyone else in the future.

Infections can also cause severe dementia. It's important to treat all infections, not just to reduce dementia, but also because infections are very painful, and painkillers are often insufficient to ease the pain.

My husband who is 65 had hernia repair surgery about 1 month ago and I was introduced to Postoperative cognitive dysfunction (POCD) which is due to general anesthesia. It was totally new to me. Postoperative cognitive dysfunction is a decline in cognitive function that may last from a 1-12 months after surgery. In rare cases, this disorder may persist for several years after major surgery. POCD is distinct from emergence delirium. It occurs most commonly in older patients and those with pre-existing cognitive impairment. It is worth readying about!

Given the risks and prognosis, I am surprised that a doctor surgeon would agree to operate on your father. I cannot even get a doctor to do a colonoscopy on my 80's patient.

My heart just breaks for you, especially since you cannot “let nature take its course” to end your dad’s suffering (and yours). My mother has had an ileostomy (similar to colostomy) for years and now has AD. As she declines, caring for her ostomy is more and more difficult, whether for her or for care givers (she and my dad, who also has a form of dementia, are in the AL portion of a graduated care facility). I am not convinced we do people any favors with such extreme measures to extend their lives. Given the choice, I would pick quality over quantity for me or anyone I love. You will be very very close in my thoughts. I wish you strength and comfort during the difficult times ahead.

I am so sorry that you are having to deal with the horrible outcome of your Dad's surgery. My husband had surgery for oral cancer just over a year ago and now has problems that I don't believe will ever get better. He no longer eats and is fed through a gtube, he has no interest in even trying to eat. Before surgery he had started to decline mentally and I did suspect that he might have the early stages of dementia but since the surgery things have gotten much worse. The Drs. kept telling me to give it time as the surgery was such a long one and things should return to normal. We have recently received a diagnosis of dementia from our family Dr. and I can't help but think that being under the general anesthetic for such a long time has contributed to his worsened condition.