OMG the stupidity!

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summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/20/2010 3:23 PM (GMT -6)   
so i went to american laser center today for a consult about this issue with my stomach on the sides of my scars.
I thought i would get to meet with a dr or at least a nurse. Instead i met some girl who knew basically nothing.
I had filled out my paper, and you know it asks do you have or have you ever had certain problems.
So i checked the autoimmune box, and put UC. And i put that the areas i was interested in having work were my stomach and my arms.
She walks in the room and says, "i talked to the nurse and because of your ulcetlivitis (thats the best way i can spell what she said) you cant have anything done to your abdomen."
I said, but i dont have that anymore, i had also written that i had had surgery.
So she goes and calls the nurse again, and she tells the nurse and comes back and tells me that the nurse told her that it even thought the ulcetlivitis was gone, it could come back and so i couldnt have it done.
And i said, no it really cant come back. And she says, well the nurse says it can. And i said, no i dont have a colon, it cant come back! and i ask if i can just talk to the nurse.
And so she gets the phone and brings it in and is telling the nurse that i said it couldnt come back and the nurse is saying, yes it can, the woman tells her i dont have a colon, and then the nurse understands what she is saying, finally. And tells her i still cant have it because of "protocol" and i said, what does that mean?
And she says, thats the protocol that the doctor set up!
and i said, ok and i left!
I had had no intention of letting these people do it in the first place, its like a chain, but they do free consultations, and i thought i would get a price to go off of.
UGH!!!
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 7/20/2010 4:50 PM (GMT -6)   
you should have said you checked the wrong box although doctor's protocol would be like, well, you checked it, so no surgery for you!

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/20/2010 7:42 PM (GMT -6)   
LOL thats what i should have done, lol.
Im going to see another one thursday, but its an actual doctor, so i should get a little more intelligence on that!
Then seeing my actual surgeon on Monday
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 7/20/2010 7:56 PM (GMT -6)   
Wow, I'm speechless! (and you know that's a rare occasion for me) wink
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/20/2010 9:31 PM (GMT -6)   
LOL i do know!
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 7/21/2010 8:22 AM (GMT -6)   
I hate to burst your bubble, but the nurse was right. It definitely can come back; Just obviously not in the colon. Do a search on the internet for Pyoderma Gangrenosum. You wont be too thrilled with what you see. And yes, its a systemic problem from Ulcerative Colitis, with or without the colon.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/21/2010 10:44 AM (GMT -6)   
thats a different disease. UC cant come back when there is no colon.
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 7/21/2010 1:34 PM (GMT -6)   
Im not gonna waste my time arguing over the semantics of the name. It is however the reason they refused to do the surgery.

Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 7/21/2010 3:52 PM (GMT -6)   
I don't think that is the reason why they decided not to do it. They decided not to do it because she checked the box and they had no *$*$ clue regardless. My doctor also warned me of UC coming back in the rectum called cuffitis I think it is called. Glorious.

capecodder33
Regular Member


Date Joined Oct 2009
Total Posts : 69
   Posted 7/21/2010 7:29 PM (GMT -6)   
agreed with anthony. it sounds like the nurse thought at first that her UC was in remission and didn't know about her surgery. and when the nurse found out about her surgery, she probably still couldn't accept her for laser treatment because they haven't - or very rarely have - run into someone without a colon who had UC and as a result haven't set up a "protocol" for that situation.

pyoderma gangrenosum, which i just read about for the first time, apparently only affects 1 in 100,000 people. that disease is rare even for people who have/had UC!

don't worry about cuffitis, anthony. like pouchitis, from what i hear it's usually easily treatable if it even ever affects you.
Male, 30 years old. dx ulcerative proctitis 1987; left-sided UC in 1993; pancolitis in 2005. Tried sulfasalazine, asacol, colazal, rowasa, prednisone, imuran, 6-MP, remicade, and humira.

J-Poucher since 2/11/10. Now UC free and healthy! :-)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/21/2010 7:56 PM (GMT -6)   
yeah it had nothing to do with Pyoderma Gangrenosum (which by the logic given, means that chicken pox and shingles are the same disease), it was just stupidity on their parts. hopefully the actual doctor tomorrow will be a little smarter!
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 7/22/2010 9:39 AM (GMT -6)   
Don't you love how they treat people like cattle at those "free consultations?" Before I got married I was going to have laser eye surgery and the same thing....talked to many different "receptionists" but never a dr. I actually walked out because I didn't feel like a person with feelings, rather I felt like a person with a cheque book!

-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."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/22/2010 7:36 PM (GMT -6)   
yep allie that is exactly how they acted, lol.
The real dr had surgery run late this morning my consult was rescheduled until wednesday, which is actually good because i am seeing the surgeon who did my ileo on Monday to see what he thinks about 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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 7/23/2010 8:16 AM (GMT -6)   
summer- awesome! keep us updated on how it went!!

-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."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/26/2010 8:14 PM (GMT -6)   
well...i went to the surgeon who did my ileo today, and he said its not a muscle problem, that he isnt sure why its doing that. He said it would be fine to see a plastic surgeon and that he figured they would probably just do a little lipo to even the sides out. And that that wouldnt hurt anything.

I asked to sign up to speak to patients who were nervous and he said of course he would be happy to do that that he was also looking for young people esp to help with that! Then he told me something kind of sweet though, he said that when younger people come to him asking questions about jpouch vs perm ileo, that he tells them about me! Not by name of course. He tells them how i came in and said, i want a bag, i dont wanna deal with anything else, just get it out, get me fixed up so i can get on with it! And he tells them that a young cute girl said that, tee hee.
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 7/27/2010 9:38 PM (GMT -6)   
awe.
what a nice dr.

What's going on with your scars? I guess i missed that.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/28/2010 3:46 AM (GMT -6)   
summerstorm~you are going to love speaking to new patients!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/28/2010 2:30 PM (GMT -6)   
its not my scar exactly. You know the skin that flops over and makes a m uffin top? well to the right of my bellybutton, i can make that flatten out with excerise and such, but on the left of the scar it just will not go down. I posted before and everyone thought that the more weight i lost the better it would get, but its getting more obvious! because now i have a one sided muffin top! So i thought it was that the muscle was cut more on the left side, but the surgeon showed me a diagram and how they do it, and thats not what happens. So he had no idea what it could be
But the plastic surgeon iw as supposed to see today, called and left me a message at 830 this morning that "you are gonna need to come at noon instead of 2:30 today" well i couldnt do that! and thats the second time they have changed my appt!
so i called back and told her no i couldnt do that, and she said, well what other day can we reschudle for, and i said, why, so you can just clal and change it again? and i told her just nevermind, so i guess i wont do anything now.
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


mantis
New Member


Date Joined Jul 2010
Total Posts : 8
   Posted 7/29/2010 11:21 AM (GMT -6)   
summerstorm,
your comment about "going to find yourself..." is hilarious. I want to post it on face book, okay? I will keep it annonymous.
Also, my belly has such a deep indentation that it looks like my rear!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/29/2010 1:54 PM (GMT -6)   
mantis-its off a shirt i have, lol so you are more than welcome to it! I love shirts with funny sayings, lol.

My belly button is almost not there anymore, 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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 7/29/2010 8:56 PM (GMT -6)   
I will totally have some plastic surgery to have things fixed up.
I have a 'button hole' looking scar on the right side where my old stoma was. it looks yucky.
also, my belly button is wrecked. and the stretch marks from my baby. Which is why i'll wait until i'm done having more kids.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/29/2010 9:41 PM (GMT -6)   
yeah babies wreck your belly that way dont they! It sucks!
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 7/30/2010 2:15 PM (GMT -6)   
News flash ladies....I don't have kids and my belly is still awful! LOL.
Next year I am def. going to have some lipo done around my belly and inner thighs!

-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."
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