Do you ever feel like you know more than drs do?

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80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 4/19/2010 12:54 PM (GMT -6)   
Hi guys!
Just went to a GP today for a UTI and during her general questioning it came up that I had had surgery a month ago. The conversation went as follows:
 
Dr: What'd you have done?
Me: I had my colon removed.
Dr(incredulous): You had your COLON REMOVED???
Me: Correct.
Dr: The whole thing?
Me: Yes.
Dr: So...do you have a bag?
Me: Yes...
 
Seriously, A)Don't call it a "bag," B)Is it that uncommon to have this surgery that she should be so surprised?
 
Another time, right after I had my surgery, I had a nurse come by my house because she was supposed to help out after my surgery...luckily I was functional enough not to need her, becuase in her initial questioning she goes, "So, do you know how to change your...your...colostomy?" After she had LOOKED AT IT and clearly I have an ileostomy--how was she supposed to help me recover from my surgery if she didn't even know what kind of surgery I had??!
 
It really makes me even more committed to standing up for myself in my medical treatment.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on:7.5 mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Flomax (for urinary retention). 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 4/19/2010 12:56 PM (GMT -6)   
Nurses constantly called mine a colostomy. I gave up on correcting
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 500 mg (3/day), IV fluids 4 hours/day, TPN 12 hours/day


coastfishin
Regular Member


Date Joined Jun 2009
Total Posts : 213
   Posted 4/19/2010 1:37 PM (GMT -6)   
When I tell people, even nurses, that I had my colon removed they look at me as if I just told them that unicorns are real, and that I have one as a pet. Then they say your ENTIRE colon??? Yes my entire colon is gone, and I am still standing here talking to you.
Jen

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 4/19/2010 1:41 PM (GMT -6)   
LOL Jen, that is awesome! It just goes to show you that if you are ever nervous about people knowing about/noticing your ostomy, they REALLY probably don't notice it, because even the medical community seems to think ostomies are just the stuff of legends or something.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on:7.5 mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Flomax (for urinary retention). 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 4/19/2010 2:08 PM (GMT -6)   
I explained my surgery to my new doctor and she pulled up my shirt and asked me where my bag was? I've also been asked stupid questions by doctors such as; do you now have dumping syndrome? No. Do you still have Ulcerative Colitis? Uh, no, I don't have a colon. You will continue to get these questions. Just be patient and try to remember that the field of medicine is broad and complex and doctors can't be expected to know everything and that we can help to teach them.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 4/19/2010 5:53 PM (GMT -6)   
yep i get that stuff too!
My girlie doctor was amazed that i had one. The first time i went to see her was not for an exam and she asked about stuff, and i said i had an ileo and she said, where???
I showed her the area, and she was amazed that she hadnt been able to see it!
Then when my dental hygnetist found out she wanted to know all about it, she didnt belive it was there until i showed her, lol.
But like Suebear said, they all have different fields they practice in. Now if you were to go to a GI and they didnt know, that would be a problem!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


polishdan
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Date Joined Mar 2010
Total Posts : 1595
   Posted 4/19/2010 7:25 PM (GMT -6)   
We may not know MORE than people in the medical field, but we sure do know a lot that they have no knowledge of. You can't know what we know until you are there! Have to forgive their ignorance.

Dan

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 4/19/2010 9:41 PM (GMT -6)   
Nope, I can't forgive an MD or a nurse not knowing the difference between an illeostomy or a colostomy. Or knowing where an illeostomy is. Sadly, the more I have to deal with the medical profession, the more I realize how very rare a good practitioner is.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 4/19/2010 10:49 PM (GMT -6)   
I went to a new doc once and explained the whole UC/ileostomy to him and showed him my bag and scars. He then asked 'how long since you have had a colonoscopy then?' I said 'ohhhhh, about 25 years'. He said looked amazed and said 'well, I think it's time you had another one then, don't you?'

Ummmm, maybe... if you can find my colon you're welcome to attempt a colonoscopy on it but I'm pretty sure it's non-existent by now. Last time I heard about it, it was in some lab somewhere being disected... nowadays there ain't nothing going in or out my backside for which I'm eternally greatful. Oh, did I mention to you I have an ileostomy?
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/20/2010 4:43 AM (GMT -6)   
I don't mind educating nurses and even a family doc...they certainly don't have a lot of daily experience...but if they don't listen and then ask a stupid question (that I just answered), I find ANOTHER DOCTOR'S OFFICE!! It's my health and if they don't listen to an important comment about 'NO COLON' what else are they ignoring?????

My first family doc, post ostomy, was totally CLUELESS and didn't care to educate himself about my condition. My current doc is wonderful and his staff is too! As for all my specialists (girlie doc etc.), I go to a major hospital and they have been up to speed on ostomies:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Post Edited (OHIO76) : 5/5/2010 11:52:36 AM (GMT-6)


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 4/20/2010 6:23 AM (GMT -6)   
Do I ever feel like I know more than drs?

Yes! In practical terms, of what works for patients, day in, day out. The advice they give doesn't always make sense or is practical.

I sometimes think there's a big gap between clinical and practical advice. Doctors and nurse spout off these medical terms and give advice, based upon recent medical journal entries and studies or past experiences from their patients. But as they are instructing you of what to try next, you as the patient sitting there listening to this advice, thinking - oh yeah doc, this is gonna work, not......but you listen because of well their umpteen years of training and on going training too, but in the back of your head you're thinking - if they could only walk one day in my shoes, then we'd be getting somewhere......

Until I told my colon surgeon how much a low residue diet helped me and still does, he hadn't even considered the benefits of this diet! I laughed and said - would you give fiber and fresh produce to a child who has just gotten over a GI infection (in a sense how I feel, 24/7)? Then he gasped and said no, of course not. This is when I enlightened him on how a BRAT diet helps me. When your insides are raw, why continue to eat a high fiber diet? That's just - crazy!!!!

I've worn out so many toilets (at least 5 in our house, several of course, numerous times, hubby just keeps buying more parts.....lol), these doctors really do need to spend a day with us. Then maybe that gap that I do see, would be smaller.
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg + Nature's Way Primadophilus Bifidus, each evening


taurus
Regular Member


Date Joined Jul 2007
Total Posts : 65
   Posted 4/20/2010 7:10 AM (GMT -6)   
You all are nicer then me.

I would be VERY upset with a doctor for not knowing BASIC information about colostomies/ileostomies/colectomies. And notice I'm saying "basic' information.

Even if it's a gynecologist or something like a podiatrist. They all have to go to medical school. They all have to get the same medical knowledge before they go into deeper training for the specific field they want. A heart surgeon/doctor had to learn the ins and outs of the bowels the same as a gastro or colorectal surgeon had to.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 4/20/2010 10:39 AM (GMT -6)   
Thank you, taurus. That was my first reaction as well. I understand they have different specialties, but even random folks that I know who AREN'T doctors often know what ostomies are before I explain. They may not know the name but it's not completely foreign to them. One of my friends is in medical school right now and when she found out about my surgery she was SO interested to talk to me about it...she isn't a doctor yet but she sure wanted to know about it...they should at least have some general knowledge.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on:7.5 mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Flomax (for urinary retention). 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/20/2010 12:56 PM (GMT -6)   
my husband is an er nurse, well actually he is the manager of the er now, but still a nurse.
And after i had surgery, he knew about ileos, they saw them plenty of times in the er, but it wasnt long, before i knew far more about it then he did.
I still dont know all the medical terms and exactly how everything works together, inside, he knows that stuff.
But that stuff doesnt really help much with day to day living.
I think thats the big difference in what they know and what we know.
Our pediatrican doesnt have children, which i thought was odd, and while i know she went to school and all, and if its something serious like a broken bone, thats where he is going. When he has other problems, i usually go to someone with alot of kids, or use my mommy md, lol.

Shaz-that happened to me when my GIs office sent me a form letter reminding me to get a scope, it said to please call if you werent going to do it or were going somewhere else so they could take you off the list. So when i called they sent me to the person who set up surgeries and told her i wouldnt be doing it, and she started telling me i really should that everyone could get colon cancer even if they were young, blah blah, and i said, yeah im pretty sure i wont get that. And she said, it can hit anyone, and i was like, yeah maybe anyone with a colon, but i dont think ill get it!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 4/20/2010 11:13 PM (GMT -6)   
Sometimes I feel like I know more, but only about MY certain problems. I couldn't tell you much about UC, heart conditions or other issues faced by people or even why I ended up with a colostomy even though I had Crohn's. I can tell you about severe Crohn's, strokes and any number of MY previous issues. Dr.s know the textbook terms/descriptions/solutions to medical issues and as such treat each patient initially with what they were taught, eliminating each possible solution until a positive outcome is achieved. It's a good dr. who will listen to a patient and will try different remedies on an individual case by case basis.

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


dilatante
Regular Member


Date Joined Jan 2009
Total Posts : 125
   Posted 4/25/2010 8:29 PM (GMT -6)   
i've been an RN for 5.5 years, and an LPN for 5.5 years before that. Until I had my ileostomy, I could do the bare basics with an ostomy. I got maybe a total of 5 hours teaching about ostomies in nursing school. I still don't know everything, and if the person has had it for any length of time, i'm going to ask what there routine is, if they brought supplies with them, and expect them to be reasonably helpful with changing. NOT necessarily to do the whole thing, unless they want to, but to help me. I am far from an expert on changing appliances, and figure if you've had one for multiple years, you will be better at it than me. Plus, you may be allergic to the type of appliance our hospital has, or the paste or something else i'm getting ready to use. I'd much rather find this out before I get started. Since my ileostomy was reversed last year, i've changed two appliances.
 
the hospital I work for carries only Hollister brand appliances, and then only the two piece, oh and a ring you can place underneath it, to add convexity. Plus paste and powder. i'm trying to get them to carry more stuff, but oh no that's too expensive!! ::grumbles:: I have nothing against Hollister, but it doesn't work for everyone.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/25/2010 8:37 PM (GMT -6)   
is that what that ring is for???? i had no idea! i have a whole carton of those rings they sent me home with but couldnt figure out what they were for, lol.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/2/2010 12:02 AM (GMT -6)   
These posts are great examples from the medical community. These crack me up. I have one to add.

I sustained a serious injury to my rectum, lower colon, and severe scarring of my small intestine in a surgery in 2006.

My colon was scarred shut so I could not pass waste. My small intestine was scarred shut so I had on-going small bowel obstructions if I ate solids. Once I even had a small bowel obstruction on jello. Tests confirmed these vital organs were scarred shut.

I had to see 11 surgeons at 7 top medical centers across the nation before I found one that figured out that I needed the scar tissue removed from the small bowel so I could eat and an ileostomy so I could pass waste. Then being able to eat I could then regain the 25 lbs I'd lost over 13 months as I searched for help.

The endearing comments I got while searching for someone to save my life were: anorexia nervosa, bowel obsessed, paranoid, I was ordered to see 2 psychiatrists both of whom said I needed a surgeon not a psychiatrist; one very prominent hospital in the US wrote on my records "just keep using your parental nutrition." (At no point did I ever GET parental nutrition.) The list goes on. I COULD and WILL be writing a book.

Unbelievable.

Rosemary

Post Edited (esoR) : 5/4/2010 1:27:19 AM (GMT-6)


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 469
   Posted 5/3/2010 10:31 PM (GMT -6)   
Well, unless any of your doctors have ever had an ostomy, you really do know more than them. I have found many times with my Crohn's that when I wasn't speaking to a Doc that did IBD regularly, they had NO IDEA what to do with me- sucked that my university medical system made me see a GP before I got to see the GI. It's just something that is so hard to deal with and specialized that a lot of health care providers don't really know what's up.
Laurenne, 25 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002.
 
Three abscesses that are now fistulas, with three setons! All gone as of March 9
Tried: LDN- Did nothing good, Remicade- allergic, Humira- no reaction
On: Zoloft, folic acid, b12, vitamin c, multivitamin

3-9-10: Total protectomy with end colostomy. Trying to get used to this whole new way of "going"


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/4/2010 6:50 AM (GMT -6)   
If you're not seeing a board certified gastro doc (preferably at a teaching hospital) you DO know more -

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/4/2010 6:53 AM (GMT -6)   
BTW, I've never had any doctor or nurse react the way some of you have - they've all been professional and emphathetic (sp?) about my situation w/o making me feel like a freak. The home nurse I had was someone experienced in ostomies so I'm wondering if whoever made the arrangements for you Chick didn't make it clear what you were dealing with?

not creative
Regular Member


Date Joined Mar 2007
Total Posts : 469
   Posted 5/4/2010 11:44 AM (GMT -6)   
I'm with you, Cleo, I have never had anyone react that way either. Usually, they are just surprised that I'm so well not long after the surgery and very empathetic. The home nurse they sent me was wonderful, she was just an RN and not a WOCN but she had tons of experience with ostomies and was incredibly helpful.
Laurenne, 25 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002.
 
Three abscesses that are now fistulas, with three setons! All gone as of March 9
Tried: LDN- Did nothing good, Remicade- allergic, Humira- no reaction
On: Zoloft, folic acid, b12, vitamin c, multivitamin

3-9-10: Total protectomy with end colostomy. Trying to get used to this whole new way of "going"


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/5/2010 8:00 AM (GMT -6)   
Well, this just annoyed me. I'm in the hospital and my nurse just said "so why did you get the ulcerative colitis in your 20's? Just eating wrong, huh?"
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (2/day), TPN 12 hours/day, Prednisone 7.5 mg (1/day), Florinef .05mg (1/day)


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/5/2010 8:01 AM (GMT -6)   
Oh. last time I was in my nurse had no idea what any of the terminology was and she was explaining things to a nursing student.
I had pouchitis at the time and she was using pouchitis as the word for ostomy. she made absolutely no sense
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (2/day), TPN 12 hours/day, Prednisone 7.5 mg (1/day), Florinef .05mg (1/day)


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/8/2010 7:22 PM (GMT -6)   
Pam222,

WOW! That is scary. Rosemary
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