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worst thing a doctor said to me

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Posted 10/19/2008 3:39 AM (GMT 0)
First, I have to say that I have seen a lot of doctors and 99/100 of them have been amazing and very empathetic.

however, I went to see a new specialist and met his resident.  The specialist was great, the resident .. well here is the story.

He was getting my history and I complained that although (at that time) my urgency had decreased I still lived in fear of getting to a toilet in time.  I gave an example of wanting to spend a day at Canadas Wonderland (like SixFlags) but being too scared to go there in case I needed a washroom. 

His response "but I am sure there are a lot of facilities there"

I was floored.  Whooosh! right over his head.

First - there may be loads of facilities but there is often a line up anyway.

Second - I was giving an example.  Another example was travelling on an airplane for 8 hours -- well you all know the examples.

I burst into tears and he looked at me and said, "why are you upset?"

this was a couple of years ago and he was a visiting resident -- England - you can have him back!

 

Posted 10/19/2008 7:10 AM (GMT 0)
did you answer him when he asked why you were upset?

I wouldn't say he was heartless, however, just absent mentally at that moment..



q
Posted 10/19/2008 12:39 PM (GMT 0)
Residents are gaining experience -- he'll upset enough people and hopefully figure out he needs to work on his bedside manner. Fortunately your experience with doctors have been mostly positive, you should just forget about this one and put it behind you.
Posted 10/19/2008 5:16 PM (GMT 0)
I think he got what you were trying to say but trying to help you find ways to do things. I used to be afraid of flying (well still am) but afraid of crohns and flying until I realized the bathrooms are hardly used by healthy people anyway. Besides being petrified on take off and landing when you can't get up, I have been fine getting to a bathroom when in the air. But it is easy to get so scared that you don't see the possibilities.
Posted 10/19/2008 5:43 PM (GMT 0)
I think once he started to see more patents and delt with a lot more cases he would have a little change of heart. It was still new to him. Don't take it personal even though it hurt your feelings. Thast why we are all here to cheer you up and help you out :-)
Posted 10/19/2008 5:54 PM (GMT 0)
Fitzy,
You can still go to the bathroom during those times. Lord knows I have....LOL Just put the choice to them you are either going to have to clean up the seat or let me go to the bathroom.  It is not like it is an open head.
Posted 10/19/2008 6:11 PM (GMT 0)
As a resident, he probably has no idea about the emotional/mental aspects of a patient dealing with IBD, I don't think he was being insensitive at all I think he's just learning.

:)
Posted 10/19/2008 6:12 PM (GMT 0)

Absolutely, Navy - I have flown a lot with IBS and now UC.  WE are going in two weeks to Vegas - two plane rides - last one over 4 hours.  I always say my white hair and cane help but in the past I have just told the flight attendant I was going - try to stop me!  I did tell one she could clean the seat instead.  She got right out of my way.  It is for your safety and there are rules because of that but all rules can be broken when necessary.  I make my own arrangments and will be sitting with back to restroom!  Worked great on trip to Hawaii a couple years ago.

ElaineNY

Posted 10/19/2008 6:43 PM (GMT 0)
Perhaps he was just trying to give you a little assurance you'd be ok while there and at the same time giving you a little push to enjoy a great vacation...
Posted 10/19/2008 6:45 PM (GMT 0)
I think someone who hasn't had this disease can't possibly understand the urgency with which we need to get to the bathroom sometimes. When people are old enough to have had a screening colonoscopy, I relate to that: "Would you like to go to Disneyland the next time you're prepping for a colonoscopy? Well, sometimes it's like that for me even when I'm not prepping." With younger people, I usually just say something like "From the time I get the urge until it's coming out is about five seconds at times.?
Posted 10/19/2008 11:10 PM (GMT 0)
Navy - thanks a bunch. That's how I feel about in flight turb but I always thought at landing and take off when the f/a's are seated it was dangerous to be up. But I guess its worth the risk than crapping your pants!! I have definitely got up before the seat belt sign came off a lot of times.
Posted 10/20/2008 12:21 AM (GMT 0)
I had a situation when I was first DX and told my doc that I couldn't work (I'm a teacher) because I wasn't able to leave a classroom full of kids to use the restroom 20 times a day. His response was, "garbage truck drivers don't have a restroom."
Posted 10/20/2008 1:51 AM (GMT 0)
I would have complained to the specialist. This is why I love the pediatric setting--everyone is nice and happy!
Posted 10/22/2008 3:29 AM (GMT 0)
I haven't been diagnosed with anything yet, but this thread makes me kind of sad and I felt I needed to reply.

I have thought for many years I had IBS. I have bouts of diarrhea, gas, etc with lots of urgency. The doctors agreed it sounded like IBS and have taken amitriptylene to slow down my bowels in the past.

I can relate to the urgency issues. I am always afraid to go anywhere because of it. I went to Six Flags last week and I had to miss a few rides/jump out of line while my family went on rides because I had to go to the bathroom and couldn't wait. Then there were lines at the bathrooms and I thought I was going to have an accident.

I have been sick on planes holding it during takeoff and landing.

The worst was one time my husband and I were following behind someone ino our car. We didn't know where we were, so we couln't "lose" them so I could run into the woods and go...and if we pulled off the side of the road they would know what I was doing. I ended up using my purse as a commode and when we got to our destination my husband politely told them I was not feeling well so we could head home. All of this was maybe within 30-40 minute drive...and I used the restroom right before I left.

I have had diarrhea worse than ever before in the last 2 months. My family doctor told me my stool came up positive for white blood cells. Now I am afraid I have UC. (Especially since I am 30 and I have knees that ache like I'm 90).

I am going to make an appointment with a gastro doc, but until then...I am hoping it really is just IBS!

Posted 10/22/2008 12:11 PM (GMT 0)
KRISMARK - I know the knee ache....and using things in the car as a toilet. I hope you don't have UC! Good luck!
Posted 10/24/2008 1:58 AM (GMT 0)
I vote for clueless as opposed to intentionally insensitive. He's young and a newbie and just doesn't understand.

On the other hand, after I was given the diganosis of UC, my first GI said, "You have a chronic disease. You will never be well. You will take medication until you get sick enough to have your colon removed." I also burst into tears and she also wondered why. In her case, I do think it was intentionally insensitive. Another doc in the same practice told me I might "become psychotic and want to kill yourself" when he put me on pred. I know a lot of docs that could use a little help with their bedside manner.
Posted 10/24/2008 2:55 AM (GMT 0)
I think with any condition, the only ones who understand living with it are the people that have the same condition. Doctors reading about a million different conditions in a medical book cannot pick up the emotional toll that these diseases cause, especially if they haven't experienced it themselves.

Like urgency for example, nobody seems to understands that. They think, oh you just need to use the rest room all the time, but you can hold it.

I described it to my parents like this. Once we were at the Cleveland Clinic and we were in the middle of nowhere between buildings, and I said to them, "I just started a 10 second timer, now find a bathroom or it's too late." My mom then figured it out and said..."oh, that's terrible." Then, I told her, that is what urgency with UC is like!!!

I think doctors need to go through these kinds of things so they can sort of place themselves in our shoes. Luckily, I had my colon removed and now I don't have to worry about urgency or UC anymore.
Posted 10/24/2008 3:37 AM (GMT 0)
We just got back from a trip to Vegas. It was horrible for me. I had my first accident 2 days before leaving, and every minute, eveywhere I was looking for restrooms in the casinos, restaurants. I was obsessed.
It got to the point that my poor husband was scoping them out for me as we walked. "Theres one, there's another"
He is so so understanding, I keep telling him he has earned his way into heaven.
When I had my accident it was about 45 seconds from the time I felt the urge, to when it just happened.
Luckily I was in my own car, alone.
I love wearing shorts in warm weather, but in Vegas I wore hot jeans in case i did have one.
In a taxi I was in a panic to get where we were going. Walking the strip was out of the question, although we did that every year, and loved it.
It is comforting to read others that really do understand.
Thank you all for opening up like you do.

In all honesty, it ruined the trip for me.
Posted 10/24/2008 2:28 PM (GMT 0)

Joylu - As newly diagnosed and 68 years old and REFUSe to let this UC stop my fun.  We are taking our third trip to Las Vegas in 10 days.  We have been there twice.  My husband is on oxygen and now has lung cancer.  He is excited about going.  The other visits we had to scope out places with the least amount of smoke - now we will be looking for restrooms.  I have done a lot of planning ahead.  We have a condo with kitchen.  I plan on doing most of my eating there - know what affects me most.  I will miss the good food in Vegas but enjoy other things.  My husband's Vietnam reunion is there and I will have to check out all the bathrooms too. 

However, I will go and have fun and not plan anything until afternoon and if I have to - load up on Immodium and/or stay at condo.  On the plane we have seats next to restroom for me and for husband with oxygen.  We love traveling - just takes more planning and relaxing than before - lots of resting time and between plane time, etc. We are flying from CNY.

Sorry about your trip but hope you will not give up on another in the future.

ElaineNY

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