As a guy, I get to have my bladder scoped every 3 months for cancer recurrence. Kind of used to it now, but the 1st time the tube went up my penis.....I-ja-ji!

it’s gross. they pull a loop of intestine out through the skin, tack it down, and cut it. it looks like a pair of sticky rose buds. everything comes out in a weird bag that u stick on.

i always thought they put some kind of port in there, but no. they’ve only been doing it this way for about a century.

A reroute of human waste direct out from the large intestine? That can't be easy dealing with. Sending you my best. You'll get through it and be a better person for it.

sometimes i swear half the stuff i know is stuff i never wanted to know.
and i suppose there’s always room for improvement.

I wish their had been youtube video's on "How to deal with urine collection bags while recovering"...but I suppose that would be kink. And not up to Google's standards.

...by means of creating an opening in the abdominal wall to allow the waste products to pass into a bag attached to the skin of the abdomen with special adhesives designed for that purpose. Be glad that you know nothing about this. (Nurse speaking here. Not an ostomy patient).

...45 years as a peds NP. Generally, once people get brave enough to try something "new and different," they find they like us, and often even prefer us. Pediatric nurse practitioners came into being in 1965, so we're not exactly new, but there are still pockets of resistance among patients and doctors.

An odd thing is that if someone doesn't like the first nurse practitioner they see, that's it - they decide we all suck and there's no second chance. I don't think that happens with any other profession. If you don't like your hair stylist, plumber, car mechanic, doctor, dentist, etc, you just find another one and don't condemn the whole profession forever and ever.

Wishing you many years of good health

i need a new pcp. i’m sure it takes a while to get in to nwm’s system. i assume a nurse will b quicker.
the gi i saw, who will do my follow up, has a very nice nurse in his office.

hopefully they’re a little better at keeping track of all the specialists. pcp’s r supposed to do that, but mine sure didnt. spent too much time shoved in a stovepipe.

They care and they are competent. My Uncle was a GP that was also an OB/GYN in the 60s-80s. He delivered a lotta kids. He got paid in a lot of different ways. Money. chickens, eggs, side of beef. And sometimes, he just did his job.

But, he couldn't keep up with the knowledge demands that happen daily, today.

tho i must admit to an upside- i very nearly died. i had a rupture. when u r in the er at northwestern, and they tell u- you get the next bed- u know u r in big trouble. i was so dehydrated, my heart rhythm was off and my bp was pretty damn high.

1+, tho. my close call brought my middle child out of the woodwork. she is coming to town next month and was hoping to schedule the reversal while she was here so she cd help. that’s not happening, as there is something on the flouroscope i had last week that bothers them. i have to have further tests, and the doc is going out of town. may work it out tho.
almost worth all the trouble.

...or underserved.

In March of 2024, I had to have the tail of my pancreas removed because a cyst, which had been discovered a year prior when I was worked up for appendicitis, changed from looking fluid-filled to looking solid, which was suspicious for a malignancy. The surgery was done robotically at UIC, by a doc who is currently regarded as the world's leading robotic surgeon. I felt so fortunate to be in such good hands. A bit of a hike from Algonquin,, in the appropriately named Far Northwest Suburbs, but entirely worth it.

My undergraduate nursing degree is from the University of Rochester, in New York, which is also where I first worked as a nurse. Full teaching hospital, lots of research, and a very good reputation locally, regionally, and nationally. It forever set my standards for what I consider acceptable.

I often used to tell parents that we all wish for our children to be unique academically, musically, artistically, athletically, etc, but medically, we want them to be ordinary. Wishing you a prompt return to "ordinary" good health.

but this nonsense….
that system has grown way too fast. they lost so many docs in 2020, too. i lost 3. every doc i saw there this past yr was wet behind the ears.

a friend who’s kid has crohn’s pushed me to get a 2nd opinion b4 they did surgery. i didnt doubt i needed it, but i wasnt rly satisfied that they knew exactly what was going on. they got me right in, which surprised me.
so i got in to see a nw gi, and i suspect that was helpful. was supposed to see the surgeon on a wed, but ended up in the er on tues. already being someone’s patient helped.

surgeon seems good, but he’s an odd duck. the nurses swear he’s hilarious, but i have yet to get him to crack a smile. wirey little guy. from russia. but they all swear he’s practically god w a scalpel.

but i agree, good medical care is a good reason to live in a big city. u may b fine now, but…

seemed different. they were almost all very young, and seemed more concerned about charting than patient care. the few veterans i had seemed sick of the job.
they also didnt seem to spill. i used to count on nurses to tell me stuff docs were too busy for.

ie- the last night there i had a new pain. a different pain. called the nurse, she got me some meds. the next morning, when they took out the drain, i realized that was what was hurting. the end of the drain was starting to rub. i’m sure she knew that, and i wd have liked to know.

the whole world has changed in the last few yrs. le sigh.

I blame EHR for a lot of the changes in attitude and job satisfaction. You spend more time taking care of the damn computer than you do taking care of the patient.

I can only speak to this from an outpatient setting, and from one system, EPIC. My former practice made the switch in 2013, and for the next 2 years, every time I drove to work I’d find myself chanting, “I hate my job, I hate my job.”

There’s a lot of crap required in every note you write that has absolutely nothing to do with giving direct patient care, but if you don’t do it, insurance won’t cover the visit. It’s very time consuming. There are preloaded point-and-click templates for various types of illnesses and levels of visits that, IMO, are poorly written and don’t describe things well. The point-and-click templates all say exactly the same things and are stultifyingly boring to read. I ended up creating all my own templates because I wanted to my chart entries to sound like they would have if they’d been my hand-written notes - individualized to each patient.

I’d spend most of my lunch break getting at least some of my morning charting done, stay about an hour after my last patient doing some more, and then 2-3 hours of unpaid time at home each evening, finishing my documentation because I couldn’t get it done during the appointments. I’m a hunt-and-peck 6 finger typist who has to look at the keyboard, because I never took a typing class, so I couldn’t “chart” while a parent was giving the child’s history. Even if I could have, I don’t think I would have, because when a worried parent is telling you what’s bringing them to the office that day, I need to look them in the eye and pay full attention. People don’t like it when your focus is on the computer screen instead of on them.

Minimum of 10 minutes of computer charting time per patient, minimum of 18 patients a day, and you’re talking 180 minutes of computer time. I only worked 2 days a week, fortunately, or I’d likely have retired much sooner. EHR certainly took a lot of the fun out of my job.

ok, i admit that he was a cutie. i got a nurse to admit once that all his patients had a crush.
he was 1 who typed and typed, but listened and reacted. my pcp once mentioned how much she enjoyed his notes.
later, when they made them available, i found out that he was just writing up whatever i said. including stuff that was completely irrelevant. i’m not sure it even registered in his brain. he retired abruptly in 2020 and i’ll always wonder y. i suspect he was a bit too free w the pain meds, but…

if it helps, as a patient, i’m extremely grateful for those med records. i’ve been through so much, and it’s rly helpful to do things like chart changes in blood work.
but i can see that it sucked for u.
i find i have to remind myself frequently of all the things i could never do w/out a computer.

...amount of time spent on documentation were built-in inaccuracies.

1. Many/most of the preloaded templates contain the phrase "Medical, surgical, family and social history reviewed and updated today." Insurance requires that you do that every visit, even if you last saw the patient just yesterday. Then, when you go to those individual sections of the record where the clinician should have entered relevant details of all these histories, there's not a damn thing in there and it says " History never reviewed." Did you do it, or didn't you? Mutually exclusive. People are pointing and clicking without reading everything in the template.

2. Preloaded physical exam descriptions that contain things that I know the clinician did not do. Worst example of this was a write-up of a visit for strep throat that contained a full neurological exam, including all the cranial nerves, balance, coordination, reflexes, and fine and gross motor testing, as well as as a head-to-toe dermatologic assessment, including the skin of the genital area. Nobody, and I mean nobody, routinely does a full neuro exam and looks at the genitalia for a strep throat visit unless someone has unusual neurological complaints or says they have a rash "down there" - both are possible, but extremely uncommon. If I did not do something, I didn't want a template designed by someone else saying that I did.

Tracking lab results, and being able to send prescriptions electronically are handy features. That said, there is one built-in potential error with antibiotic prescriptions. Antibiotics work best given at precise intervals in order to keep a steady level of the drug in the blood stream. That means a twice-a-day antibiotic should be taken at 12 hour intervals, like 8A and 8P, and a three-times-a-day one at 8 hour intervals, like 7A-3P-11P, or 8A-4P-12MN.

The preloaded instructions on the EHR only said "twice a day" or "three times a day." So, a patient could very likely end up taking their twice-a-day antibiotic at 10 AM and 6 PM, which would leave them with an inadequate blood level for 4 hours between 6A and 10A, and a suboptimal effect on the bacteria the antibiotic is supposed to be killing. I would take the extra time to change the dosing instructions to what they should have been, but I know many clinicians did not.

I was uncompromisingly fanatic about thoroughness and accuracy in my documentation.

It does sound awful.

Keep envisioning the day it is gone. And know that the world will look different as you will find yourself full of gratitude for getting to the other side of it.

Sending many

i was sick for a long, long time. trying to get docs to listen for almost a yr. i swear the worst thing that can happen to u is a bad case of a common and usually benign condition. nobody but nobody was worried about this til i got to the er. even me, rly.

btn that and recovering from surgery, i was just plain soft. couldnt do yoga for 6 wks, and even then, barely. i’ve finally got most of my strength back, but i get to do it all over again when they reverse it.
wont b quite as bad. it’s a 3 hr surgery, tho. and 6 more wks of no lifting.

I've known you here for a long, long time. You are a resilient soul.

Sending hugs and healing.

😘. 🤗
thx hon. i rly cherish my old friends here.

almost every older woman i’ve told my story to knows someone who nearly died from this ‘common problem’. i shd dig into the stats, but i bet it’s more women than men who end up on the table too late.
i came so damn close. i only lost a foot, but a dear friend’s story was of a woman who lost 3’.
i also had some spread. my bladder is pretty badly fibrosed, too.
the shitty docs swore to me i had ‘no active disease or inflammation’.

i dont know how close i was to dead, but i was damn close to a heart attack. mostly from the dehydration. they had a hella time getting my electrolytes stabilized. dont know if that is common. close enough to go to the front of the line in probably the busiest er in chicago.

the whole story of this is def 1 of bad times in my life. started getting bad in 2020 and it’s been like walking around w an invisible 50lb field pack on my back. starting to feel like my old self, realizing i barely recognize it.

glad we both made it. only good thing here is that it is over. that’s my consolation. not something i’ll b worrying about forever.

It was going on for years until it turned into what it turned into.

I required 5 units of blood while in the hospital for almost a month.

No one came to visit me much and I ended up in a private room, I remember that much.

I'm still sick with diverticulitus today; right now in fact.

The medication I was taking for pain for the last 15 years in "no longer available".

They've got me on something different that is making a constipated zombie out of me.

I've been bed ridden.

I managed to get out yesterday to shop for food and came home and went back to bed.

I just got up for awhile as I woke up in so much pain I could barely move.

Three pills later and here I am right now.

I often wonder how much longer can I go on like this?

Take care mopinko! We need all of the hope and care we can find! This is a real struggle no doubt.

ya know, i didnt notice the constipation for quite a while. it’s hard to notice when something doesnt happen. i only sorta noticed was i wasnt having my usual miserable squishy poops.
it’s amazing how this affects your brain. i know just what u mean. zombie. i figured i was just depressed or lazy, both of which i tend to b.

i nearly went broke, cuz my income comes from a 2flat that i started a big remodel on in early 2020. btn my gut-brain meltdown and the plague, i had no income for almost 2 yrs, while dumping a ton of money into it.
i had an adorable little single family that 2 buddies and i had restored. was getting good rent, too. but i had to sell it. i spent almost all my savings and had $20k in credit card debt.
i did pay off the mortgage, replenish my savings, and was able to raise rents cuz of the improvements i made. so it’s almost neutral. but i sure wish i had that 3rd check still. then again, i dont have the headache. and a couple of adorable kids bought it.

i rly thought i was an old lady now, and done w who i was. at least that isnt true. i know it can come back, but this time i wont b ignored. i saw a new gi once, days b4 it blew up, and he told me exactly what it was, and told me he wanted to do my follow ups.
i’m looking at suing as much to see a doc who will tell the whole truth as anything. even if docs know the last doc was an asshole, they arent gonna volunteer any info.
i know there is other damage. le sigh.
i guess life’s a bitch and then u die.

i small upside. i reconnected w my estranged child. so shocked that she cared. she is hoping to come take care of my after my take down. an ill wind and all that.

... wearing slacks is out, but I'm not a sweatpants sort of fellow. So I wear chef's pants, which look good, are baggy in the right places and I get a lot of compliments on my fashion flair.

It means not having to get up nights to hit the can. It means by adding a second bag I can drive through to the next fuel stop. It means I can testify to the dangers of second hand cigarette smoke. It means between the surgeries for colon cancer in 2017 (they left enough colon I don't need a colostomy bag), and the bladder cancer surgery, my front looks like a road map.

People like us are too tough and pragmatic to let it get us down past the initial shock (and I have some insight on that shock), it took me a month at least to be able to look at the stoma, let alone deal with it. I treated it like a disfigurement when what it was, was a reconfiguration.

C'mon, show it your innate tough Chicago being and pull through!

this affected my bladder. in fact, my main early symptom was urinary trouble.
when they tried to take my foley out the morning after, i put my foot down. i was so happy not to b running to the can.

at this point i have to remind myself that the only alternative is the peace of the grave.
nevertheless, i shall persist.

... four times. Follied four times. I got stories! Catheterized about 20 times for BCG treatments over two years. No upside to catheters.

Nothing like considering the alternative to make one embrace the cure!

I connect to a night bag on road trips. Saves a lot of worry about over filling. It doesn't affect my driving, at all.

So bladder cancer in the hill country and Aggie Land. I smoked and was exposed to some toxic solvents. Both are implicated in bladder cancer.

I thought I had dodged the smoking bullet as I was quit 20 years, bicycling better than my age and heart in great condition. Never heard that smoking was a major cause of bladder cancer.

... nice thing about the leg bag is you can empty in in the grass and it looks like you're tying your shoe.

Tee shirt and shorts.

was, fortunate. I had about two feet of lower bowel re moved , didn’t have to be bagged.relly lucked or I had a damn good surgeon. This in 2003.. still doing OKay. 89 in 3 weeks.. eyes are going , Stroke couple yrs. ago.. still consider myself fortunate. Good luck an have a great recovery.

they were looking at a non-invasive robot surgery. they said my chances of needing an ostomy was 20-30%. when they wheeled me into the or, they assured me i’d have a temp ostomy.
at least it’s only temporary.

i do feel better than in a long time. i always figured i’d live to b 100, and full of piss and vinegar to the end. my family tree is full of very old ppl. my great grandpa dropped dead of a stroke standing in line for confession at 96. thinking the rocking chair was gonna get me at 70 was crushing.

now all we all have to do it survive the next 3 yrs.

I was dreading a colonoscopy that's nothing compared to your problems. Good luck, best wishes it's over quickly and painlessly.

One of my nurses said that I got the better deal😆 anyway count your blessings that it's temporary. Take good care and attention to the skin around the stomach.

had a bit of that. not too bad,

Before things settled down.

it gets to b too big of a problem.

I had the right pouch but flat rings. The addition of convex barrier rings has been a game changer.

I tried to find an online image I could post. This link is the best I could find. With the flat rings I was trained to stretch them to proper size and apply them to the skin first. With the convex ring the flat did is put in the pouch, with the raised to skin.

These do a better job of preventing leakage to the surrounding skin.
https://www.brucemedical.com/hoadcecobari.html

One more thing, we'll 2 the front and back protective paper/plastic is a little tricky to remove and be sure you have the ring positioned correctly before it touches the pouch, they bond better than super glue.

it’s helping, but it sure makes it harder to hide.
this all so- stuff i never wanted to know. they sent me home w a bag of stuff, then ordered a big box of stuff for when i got home. there was a bunch of different stuff in there, and those ppl dont do very good instructions. took some figuring.

i cant wait to forget it all. tho i wont rly.

i cant believe how this bounced up this morning.