Advice on hospital insufficent care

Some background. My father is a 57yo, went into the hospital (Kaiser Permanente) for what they called a "mild flare up of ulcerative colitis". Sent him home and he was back in the hospital in a week due to dehydration, they kept him for a week but had him on the wrong diet. He ended up with a perforation in his colon, got his colon removed and an ostomy placed. Then got a bad infection in his abdomen that he hasn't been able to get rid of, multiple drains placed, a wound vac, PICC line and NG tube. Multiple CT scans later they found the infection start site (staple from the colon removal), antibiotics would work and then not work so he has been on several different ones. Hasn't left the hospital in 3 months. He now has C. Diff. Doctors say that there is a special surgery he needs/that would help, we ask when can we do that and they say that they don't actually do it, it's a specialty hospital in the bay area (out-of-network hospital). We ask when can we get him over there and they say that they can't send him, he's not there yet. They are trying to say they have other options or treatments that they can do for him, however it's been 3 months, no improvements, he can barely walk, got his NG tube removed and a G tube placed so he's had a few bites of food in the last week but still throws up from time to time (ileus is asleep). They talk us in circles, and we know there is a way to get them to send him to the other hospital but just haven't figured that out yet. Just really want him to get better and find a way to get back to some kind of "normal" life.

Any suggestions or thoughts?

Thank you!

Patient advocate and then I’d try to find a patient advocate at the new hospital that you want him to go to; see if they can help you.

The way it works in NY is that once you’re in the hospital is that your insurance has cover all the decisions that the doctors make. My GI was always out of network (didn’t accept any insurance) and as soon as I walked in through the ER I was assigned to him and my insurance paid him. It’s an unfortunate game that we had to play. All I was responsible for was my hospital copay.

I’d call the California health insurance board and ask for help. You need to get advocates helping you ASAP.

I had a collectomy and had an abscess too, mine was cleared up with antibiotics but some people need reparative surgery. This is not uncommon.

I remember the first time I got sick I lost almost 60 lbs in 60 days. I was all skin and bones and could barely walk. I’m healthy and happy now but there is some recovery time.

Your father has unfortunately been through a lot, maybe too much.

First talk to the Kaiser Permanente patient advocate, then demand a sit-down review with the physician in charge of you dads case, possibility the admitting doctor. Take detailed notes. Find out all the facts of the case. Be cool, calm and not accusatory. Have you, or another family member, been with your father since his was admitted?

The last thing you want to do is to commit to some possible experimental, out-of-network "special surgery". You need a lot more specifics to help your dad, and we need them to better advise you. The good news is there are some wonderful medical facilities in the bay area.

Best of luck, and please keep us posted.

My experience with hospitals has been horrible. My first hospital stay for IBD resulted in a lawsuit that I won, for abuse and neglect. Depending on where you are, hospitals will make you worse. You have to advocate every step of the way or you will get insufficient care.

During my last hospital visit, the head nurse told me privately that the GI ward is a one way track to surgery. They can't fix your disease so they just run you in circles until your bowel is totally trashed, and then they say, "Well, you're not getting better, so time for surgery!" Getting a second opinion in a hospital is pointless because the GI team all know one another and they will back each other up before they look out for your best interest.

If you don't have any knowledge of UC or anyone to advocate for you, and you're not willing to take a risk by going home and trying alternative treatments despite your suffering, then your chances are not good that you'll keep your bowel.

I hate the GI medical system... hate, hate, hate it. They are corrupt and useless.

poopydoop said...
Alternative treatments DO NOT WORK when you have severe disease.

I'm considering quitting this forum because I am done with reading this dangerous pseudoscience.

YES THEY CAN.

Alternative treatments are the only thing that worked for me and they're not pseudoscience. They are just not endorsed by MDs. I failed all modern medications. Now I'm in remission. If I didn't leave the hospital and find the courage to try alternatives, I would've lost my bowel or I'd be dead.

I'm allowed to speak my experience and if you don't like it, then too bad. If you want to leave them forum then oh well. Don't let the door hit you on the way out. You can also put me on your ignore list if you don't feel like reading my "pseudoscience" anymore. I do a lot of research every day from official sources and your idea of "science" is clearly very limited to whatever doctors have told you.

MarkWithIBD said...

If you don't have any knowledge of UC or anyone to advocate for you, and you're not willing to take a risk by going home and trying alternative treatments despite your suffering, then your chances are not good that you'll keep your bowel.

Ally,

You are a new member here — Mark has a long history of saying very provocative things on this forum like EMF/WIFI and Bluetooth affect his UC. Mark denies it and doesn’t like to be called an antivaxxer but he repeats the antivaxxing talking points of the Russian Trolls and Infowars.

A few months ago he was warned by the mods for saying a very insensitive thing about surgery.

Mark won’t see what I wrote because he recently blocked me because I pointed these things out.

I’ve been on this forum since 2005, I don’t recall anyone being in the hospital for multiple months ever being able to walk out of the hospital because of non-medical “alternative treatments”. I would be very weary of that suggestion.

I’ve been in the hospital for over 100 days due to my UC and it sucks. I hope that your father gets the care that he needs and is out of the hospital soon. If I were you I’d walk right into the hospital administrators office and demand help, I’d drive to the state insurance regulatory agency and ask for help and I’d be on the phone everyday with your dad’s insurance company (you’d probably need some authorization to speak on his behalf).

Mark....The OP mentioned the father had his colon removed....did I read that correctly?

q

quincy said...
Mark....The OP mentioned the father had his colon removed....did I read that correctly?

q

Quincy,

Don’t let the facts get in the way of Mark’s arguments and opinions.

He basically maligned everyone who had their colon removed because they were unwilling to try alternatives or weren’t as knowledgeable as Mark. It’s our faults that we needed our colons removed.

To the OP – I am very sorry to hear about what’s happening with your father and I hope he will get the right care and recover soon.

To ambling and ks
Thanks. I don’t know how you guys have the patience to stick around here for so long.

Mark says he wants to share his experience but whenever anyone asks him how he got into remission, he comes up with an excuse like his methods are too controversial to share, or we should just do our own research and figure it out for ourselves. I call bs.

In one post he says he is a medical researcher, in another he says that all medical research is funded by drug companies whose goal is to keep you sick and taking medications forever. Seems unlikely that you would take a salary from a system that you feel is deliberately manipulating and hurting people? I say bs.

(by the way. In my line of work we joke that if you want to get a research proposal funded, you claim you are going to cure cancer or stop climate change because this is where the money goes… plenty of funding for cancer research comes from government agencies, i.e. taxpayers, and charities, NOT drug companies)

He has no concept that the way the American healthcare system works is not how it works in the rest of the world, in relation to who is funded by whom.

He says he gets his information from reliable sources; when asked to give these sources he refers to a facebook group. When someone calls him up on this, he says he used facebook so that it’s accessible to “the lay people” who read this forum. I say bs.

When a forum member turns around and says, actually I am not lay, I work in science, he accuses them of lying.

One that flew under the radar of you guys was in the thread where the woman was considering doing a fecal transplant from her baby. He claimed he was enrolled in a clinical trial where the researchers spent 5 years chosing 2 donors from thousands of applicants, and it was restricted only to donors who had never relocated, never had a GI illness and never had any vaccines. I asked if he could give the name of the trial as I wanted to read about it – and surely any trial that has been running for 5 years would publish at least intermediate results. He ignored my message. I call bs.

In one thread he claimed he’d been in hospital 10 times with life-threatening flare-ups, and now on this thread he says modern medicine failed him and he cured himself by leaving the hospital and trying alternative methods. If the alternative methods worked, then why did he need to go back to hospital 9 times after the first visit, and if modern medicine failed him, why did he take himself back to the hospital so many times? I say bs.

He claimed he had was so badly treated while in the hospital that he won a lawsuit. He also had a severe reaction to the MMR vaccine. What are the odds??

In one post he said you have more chance of being struck by lightning than dying from measles. This is absolutely not true (I checked the statistics), and when I pointed it out he accused me of nitpicking. In other cases where I called him out on his false information he told me I am lazy for just posting the first thing I found on google. Says he who uses facebook posts as “evidence” to support a theory.

The problem with conspiracy theorists is that they believe every conspiracy going. This indicates a bias and lack of rationality in their thinking, and reduces the plausibility of their theories.

He has been incredibly rude and disrespectful to me in many posts, not to mention has total insensitivity to the OP on this thread and anyone who has taken immunotherapy or had surgery. Yet will call out others for being rude.

Blaming and shaming people for taking medication or having surgery is disgusting.

This is supposed to be a support forum and many people come here when they are vulnerable and suffering and cannot find the support or answers that they need in their immediate environment. It doesn’t make a difference if I put him on ignore or not, my issue is that he spreads lies and false information which has the potential to harm people both psychologically and physically. I cannot participate in a forum where such behaviour is acceptable, and so this is my last post for as long as “Mark” is active user here (I even doubt that he has IBD).

Thanks for everyone else who has been supportive during my recent flare.

Looks like this thread went off of tge deep end. Locked.