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No, I don't think I need to watch a video about colon cancer screening....

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Posted 7/3/2013 12:49 PM (GMT -5)
Just got a big packet from the hospital wanting me to participate in a study about decision making around colon cancer screening... had a dvd in it, and questions about whether or not I'm leaning toward being screened for colon cancer and which test sounds best and such.

I get it that someone was just reviewing my records, and next week I have my first physical since turning 50 .... but somehow I am kind of furious that the hospital that TOOK OUT my colon is sending me a survey asking if I'm considering getting my first colonoscopy....

I called the number on the letter, and the woman was very nice and apologetic, and I think the particular center that I go to for pcp visits is experimenting w/sending these things in advance....

Feel free to share similar sorts of stories..... not sure why this is getting to me so much today, other times I've found such things funny (like when I went to the ER a week after my proctocolectomy w/an abscess and the medical student asked to see it, while solemnly promising that he wouldn't do a rectal exam....)
Posted 7/3/2013 12:58 PM (GMT -5)
This is probably just a random sample from hospital patients. The good news is, at least I think, no one accessed your records to review your personal health history. I'd rather be asked to do a survey on colon cancer than have some random hospital employee view my files looking to see if I qualify.

I understand the anger thing. I get mad when doctors don't know what j-pouch surgery is. Some of the famous one liners, "Oh, do you still have UC?", or "Where is your ostomy?"

Sue
Posted 7/3/2013 1:14 PM (GMT 0)
I think that we've been through years of horrible illness and then grueling surgeries, and then even if we normally have roaring sense of humor, something there is going to wear thin. We've dealt with enough stupid questions and dumb remarks from normal people. We think we won't have to deal with it from doctors and everyone else who works in hospitals, but there you are. Stupidity from the authorites we depend on. It makes perfect sense that you feel irritated, Blueglass.
I remember the last surgery, and the hospital rule was I had to take that stomache-protecting tablet before bed. It kept coming out whole in the bag, so I stopped taking them. They said I had to take it. I said it was going out the stoma and in the bag. They said I had to take it. I said... etc.
Posted 7/3/2013 2:02 PM (GMT -5)
Thanks suebear and B'dereh. I got an email last week on the secure patient email about a review of my records saying I'd never had a TDAP shot and that they'd send info, which I got yesterday..... so I replied to that email, nicely, asking if that was the review that got me the colonoscopy info.... got an email back right away asking me to accept sincere apologies and saying they would review their procedures so that doesn't happen again. Can't really ask for more, and in the scheme of things, I know this is a small deal.

Suebear, that is a good point about privacy. The woman from the clinic said they went off a hospital generated list of people who might need a colonoscopy..... seems they need to change the computer program so it checks whether the person has a colon....

That pill thing is ridiculous!
Posted 7/3/2013 2:39 PM (GMT -5)
then again, it's better that they include people who don't need it, then leave someone out who might need it.

I went to a weekend conference for people with pouches a few weeks ago. It was great to talk normally about all the jpouch issues in such a banal, needs-no-explaining way.
Posted 7/3/2013 7:44 PM (GMT -5)
ok blue, got one for you.
four months after I had switched to a new GI doctor -only due to my insurance changing- I had yet another massive flare of my left sided UC. This was about the 13th massive flare I had so I knew what the symptoms and protocol were from my previous very experienced, talented, much loved doctor. I had met the new GI guy when I was in so-called remission. He had even done a scope and said - ok.. only proctitis, even though I told him I had full UC and he had all my medical records from my previous GI showing I had left sided UC and that my previous GIs plan was to get me on remicade.

So after this massive full left sided flare starts, I call the office to get an appt with my new GI guy or any GI in the practice. They refuse to give me one. (There are no less than seven doctors in the practice). I continue to worsen. I call twice a day for about 5 days. No appt. Then they finally schedule me an appt with a newer lower level doctor for about 2months away. Meanwhile, they prescribe me Proctofoam. Yup proctofoam for massive left sided UC, going about 30times a day with blood. After about one week of losing weight, vomitting, high fevers, becoming malnoursished etc., my hubby starts hounding them on the phone and they prescribe me rowasa enemas. seriously, Duh, that surely isn't going to do anything for left sided UC.

So after about 2-3 weeks dealing with these jokesters and taking all the prednisone I had left in my medicine cabinet from my previous flares and previous GI, and deteriorateing rapidly, my hubby took me to the ER after I passed out. They admit me, put me on iv steriods, tell me flare has spread to my entire colon by that point in time, as it had basically been left untreated for over three weeks. IV steroids don't do squat and five days later I end up with emergency surgery to remove the colon. Two weeks after surgery I get discharged. Home for one day. Back in ER next day as they had discharged me with an ileus. And got discharged again two weeks later.

When I got home,there was an irrate message from GIs office on my answering machine about how I missed my appt for my UC flare which they had scheduled way out when I was in a massive flare. They were going to charge me/bill me as my insurance wouldn't pay for a no show. I spent months fighting with them telling them that duuh... I was in the hospital getting my colon ripped out and how could I go to the appt. And if they had given me an appt when I needed it, I might not have ever had to lose my colon.

as you can tell.. I am still ticked off by this, six years later!
Posted 7/3/2013 9:55 PM (GMT -5)
ddd45 I would be mad too!
A few years after I had my surgery I got a letter from my GI that said "It has been 2 years since your previous colonoscopy. You are due for one this year. Please call to schedule"
So I called about it, so they would take me off the list and I told the woman I wouldn't be doing the test. She pulled my records up and said, "ok but it's really important to get checked for colon cancer, it can happen to anyone and it's easily detectable. you really should have the test"
I said, "i know it's important, but I am pretty sure it can't happen to me" Now she had my records up, and it clearly says in there that I have an ostomy and I know she was looking at them cause she told me she was but she said, "please rethink it, it can happen to anyone" I finally said, "not people without colons"
She realized then what was going on and apolgoized. I know she was being nice and thoughtful and wasn't a nurse or dr, but it still amazed me.

Another time I went to the dr about a bladder infection,and she asked me about the surgery. And I told her and she said, "and they removed your rectum?" and I said yes, and she lifted my shirt to press on stomach and she said, "and where did they put it?"
I just looked at her cause I didn't know how to answer that. She said, "your ostomy, where is your ostomy?" she realized what she had said, but she was trying to ask where the bag was so she wouldnt press on it.

But the one that made me the maddest was when I went for a consult on something totally unrelated and it had a box to check if you had ever had certain problems, and one of them was auto-immune diseases, so i checked yes. Well I went in and the girl asked me what it was and I said UC but it's gone now. And she was like I have to call the nurse for this, so she called the nurse I got on the phone with her and she said, "We can't allow you to do this because of the UC" I said, i didn't have it anymore and she says "oh but it can always come back" I said not without a colon, then she said something to the effect of you have to still have something there and the UC will come back in it. I literally just walked out of the office after that.
Posted 7/4/2013 6:01 AM (GMT -5)
ddd yours is a completely different order of magnitude.... I'd be furious. Did you ever contact a patient advocate or something like that? Not so much regarding the infuriating paying for appt thing, but due to the substandard care..... just seems like you were flirting w/a lawsuit zone (oh boy, that's a fun thing for a sick person to do as a hobby.....)

Have to say that one of my biggest fears is having insurance change and not being able to see my doctors..... although in my case it's pretty unlikely.

Summer, sigh.... wonder how much of this I have to look forward to.... I guess the doctor's office feels like the one place where they're supposed to have a clue about our situation.... just so unsettling when they don't....
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