anyone here living w an ostomy?

[mopinko]

damn, this is just awful. mine is temporary, thank ja. shd b reversed in early june.

i swear gi medicine is still stuck i the 50’s. the road to this place was incredibly long and stupid. i mean, i had 6 cts, none of which see the fecoliths (yes, little balls of petrified shit.). none of the reports mentioned a stricture, but after finally getting a scope, the gi insisted it was visible.

i cant wait to lose this thing, and i am eternally grateful it’s only temporary.
also grateful to b alive, as i truly had 1 foot in the grave.
still….

[OAITW r.2.0]

1. I know nothing about Ostomys. Is this an intestinal thing? A tear or something?

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!

[mopinko]

2. yeah, they severed my large and small intestines to let my resection heal.

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.

[OAITW r.2.0]

3. I thought wearing a urine bag with tube up my uretha was awful.....piece of cake compared to your situ.

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.

[mopinko]

4. well, i sure have a story to tell.

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

[OAITW r.2.0]

5. Not many people have our experiences.

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.

[3catwoman3]

7. An ostomy is a "bypass," so to speak, of the normal passage of urine or solid waste...

...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).

[OAITW r.2.0]

8. The less I know about potential health conditions....the happier I am.

My urologist is from Lebanon. I trust him implicitly. My PCP is a female NP...She is awesome. She pushed me hard to deal with my situation (blood in urine). He scooped out a golf ball sized tumor. ! year in, an occasional blast of potential cancer cells, then good to go.

I love everyone that devotes their lives to medicine.

[3catwoman3]

10. I'm so pleased to hear that you like your NP. I retired 4 years ago after...

...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

[mopinko]

12. i've had np's and liked them.

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.

[OAITW r.2.0]

15. You know why NP's are great.

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.

[mopinko]

9. well i do now and i sure wish i didnt.

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.

[3catwoman3]

13. Yay, Chicago! Access to top shelf health care is the main reason I will never live anywhere rural...

...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.

[mopinko]

14. i've been in the northshore/endeavor system for a long time. was happy w my care til the plague.

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…

[3catwoman3]

16. If the nurses like a doctor, that's generally very reassuring. We know how to tell the good ones.

[mopinko]

19. ya know, the nurses i had at the hospital

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.

[3catwoman3]

20. The biggest reason it was time to retire 4 years ago was electronic health records - EHR.

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.

[mopinko]

21. ya know, i had a rheumie that i rly liked

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.

[3catwoman3]

22. The biggest problem I saw in EHR besides the aforementioned...

...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.

[madaboutharry]

6. mopinko, I am sorry that you are so uncomfortable and miserable.

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

[mopinko]

11. it's frustrating, tho. i've worked hard at recovering.

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.

[madaboutharry]

17. mopinko,

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

Sending hugs and healing.

[mopinko]

18. .

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