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08-05-2011, 12:14 PM   #1
allieinwonder
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Pill Cam Results

Well, if you got excited by seeing the title of this thread, I'm really sorry. The same thing happened to me when my GI emailed me this very title today!

He didn't get around to looking at the 55,000 pictures. He leaves tomorrow, and his email to me says he wont be able to look through them until he gets back. When is that? September 1st. Yes, I will not have an answer for at least another month.

I knew this would happen...I knew he wouldn't be able to look through them with two days to do it. But I really don't like the way he is treating me. He said I needed that pill cam, and now he is leaving me hanging for a long time. He didn't even refill my nortryptiline, so I have no meds until I get the results of this test.

I refilled my tramadol today to take with me (for those of you that don't know, I'm going back to the states for four months, I leave in a week), and I know that will only last about a month, especially with how high my pain is right now. I have one refill left, but I will have to drive to a base in the states to get it, which will be a couple hours.

I'm at a point where I just don't want to care anymore. I was so stressed last night over this test and its results. My husband puts it best, either way its bad news. Either the pill cam comes back normal and I have to continue being in pain, or it comes back with evidence and I really do have Crohns. I know all of you understand how that is...I want it to show Crohn's, but only so that I can finally get the treatment and help I deserve.

Thank you, to ALL of you, for being so supportive through my journey. I don't know what I would do without you guys!!
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08-05-2011, 12:24 PM   #2
Cat-a-Tonic
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Oh Allie, this sucks! I don't suppose this doctor has a supervisor or superior that you could complain to? Even if you could just write a letter or email to put in this GI's file so that everyone knows he promised you something he didn't deliver on AND didn't refill your meds! How awful, I'm so sorry to hear all this.

Is there possibly another doctor, or even a radiology tech, who could look over the images for you in the meantime? When I had my pill cam, they said "a doctor" would look at the images, and when I asked if it would be my GI, they asked who my GI is. I said Dr. S, and they said oh yes, he's very meticulous and particular, he'll definitely look at the results himself. But that gave me the impression that oftentimes other doctors do look at results like this. So, that might be an option?

I don't know what else to say except this SUCKS! The waiting, the being lied to by doctors, the general jerk-iness of it all. I know the feeling all too well and I *hate* when it happens to other people! I really feel for you and I wish there were something I could say to make the situation better! Sending lots of hugs your way, and hoping the next month goes by quickly and that your guts give you a bit of a break for once. Hang in there!
08-05-2011, 12:28 PM   #3
Lisa
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That really DOES suck!!! Shouldn't he have someone to cover for him? What about patients that get into trouble while he is away??? I would say that is VERY irresponsible of the doctor to make you wait - and especially with no meds.....

So what part of the States will you be in???
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08-05-2011, 12:37 PM   #4
allieinwonder
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I do have a patient advocate that I can talk to. On top of it I am good friends with the medical director here at my base, who has helped me through some of the process to get to landstuhl and communication with the german hospital. I am thinking about calling the patient advocate, because I really don't feel like any of this is fair. I'm also thinking about emailing my doctor back and asking for it to be done a different way, and explain how much pain I'm in (the spot just keeps getting warmer and warmer, tylenol isn't helping)...but he might not have access to his email while he is away, and I'm afraid he wont take my email seriously.

The military works a certain way, and spouses seem to get left behind at times. They only accept 10% of the cases that are submitted to Landstuhl of sick spouses, because its purpose is to help the actual soldiers, most from Afganistan and Iraq. I am grateful they have helped me, but keeping me waiting for 8 months for the test, then to just lolly gag on the results..its kind of insulting. When a soldier goes TDY they don't do anything for their actual job..they have a different purpose at that time. I just wish he could have assigned another doctor to the job!

I'm not too worried about the nortryptiline, because it wasn't helping anyway, I just don't like the principle that he didn't think about my meds at all. He didn't think everything through, now did he?
08-05-2011, 12:49 PM   #5
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Allie, I'm so sorry for you and like the others have said...this really does SUCK!! I'm appalled at this for you!
I would definitely call your advocate, and email your doctor. If he doesn't take it seriously, then call the office...over and over and over ! Until someone takes you seriously!

Awe hun I was so excited for you to have your results today
Hang in there.


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08-05-2011, 01:17 PM   #6
allieinwonder
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Thanks Tracy! I'm bummed too, especially after being so nervous about it!

The more I think about it, the more I think I'm going to see the patient advocate just to make sure there isn't any other way. I don't think emailing this GI will be worth it! I just don't want to insult him by trying to get help in getting the test results faster. Either way he leaves here in a month so he will never be my GI again! Phew!
08-05-2011, 01:28 PM   #7
Crohn's Mom
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I'm sorry, and this may sound awful...but why the hell should you care if you insult him!! He has insulted you!! And..like you said...in a month you will NEVER have to see him again Perfect time for you to state how you feel. There are ways to do just that without "losing your cool" and still keep your composure. Don't let him intimidate you sweetie. Military or not, he is a doctor and not GOD. They screw up too. I'm sure he is quite busy, and there's nothing he can do about the military dictating his life, but that's no excuse for him to not cover his responsibilities and make sure and see if there is possibly someone else who could look at your pictures...especially since he KNOWS you are coming back to the states.
Argg....I'm so mad for you!! LOL sorry for the rant
08-05-2011, 01:53 PM   #8
StarGirrrrl
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That sucks! I'm sure if you were told Sep 1st before you would have been happier than you are now.
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08-05-2011, 02:25 PM   #9
Carrie630
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I'm sorry, that's so disappointing. I think that you should definitely see your Advocate and talk to the medical director. If nothing else you should be allowed to retrieve your records on disk including all of the photos so that you can have them reviewed by someone else.
08-05-2011, 03:08 PM   #10
Jessica
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I completely agree with Carrie! I would get your records and see if you could find someone else that would give you the time. <3
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08-05-2011, 05:54 PM   #11
allieinwonder
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Aww no need to get so worked up Tracy, you have so much on your own plate! :P Yeah I hate being mean or impolite, which is why I have been undiagnosed for so long. On top of that I'm uncomfortable around doctors...I need to get over that quick lol. Even if I do contact the patient advocate I wouldn't be rude or anything, I just don't want a doctor to assume I am and think I am just a crazy person who wants attention or something. I have had a German doctor confirm its bowel inflammation by hand because it has gotten so bad, so I know I'm not crazy!

Star, I wouldn't be upset if he had explained that. Its the fact that he said two days, and now its a month, at least. Thats a big difference! I had already come up with a plan to tackle this if it proves I have crohns, and now I have to wait to try and implement it...if he had kept his word I would have had a chance to get back down to the hospital and get treatment before I go back, but now I will have to figure out if my military insurance will allow me to see someone in the states temporarily in the states to get proper meds.

On top of it all my pain has gotten too high for tramadol to be effective. I have used it over a year and it has never lost its ability, but now my pain is worse than ever so it isn't strong enough. I was kind of thinking of asking for something stronger if the pill cam showed something, but that's out the window too. :/ I don't want to have to go to an ER in the states for pain treatment, they always assume I'm a drug seeker, which really sucks!

Thanks for the suggestions guys. If I can convince them to just have another GI look at it I wouldn't have to get the data myself, so it wouldn't be a hard process. They are going to email me the abnormal ones, if there are any, to help me understand whats wrong, but other than that we haven't really figured out if I can get a copy...I don't know if I want all 55,000 pictures though. :P
08-05-2011, 07:09 PM   #12
Carrie630
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I wonder how they go through all 55,000 images. Could you imagine looking at every single one? I wonder if they have some kind of software to pick out weird spots.
08-05-2011, 07:29 PM   #13
Jessi
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I am so sorry, Allie! I can kinda imagine how you might be feeling. I really feel like the military peeps like to put us on the back burner. I have always felt that way. I know it's the best way to go financially, but the thought still lingers. My husband and I have been through a million situations like this. Definitely chat with the patient advocate. Report your doctor and get the help you deserve. I know it's easier said than done, being as nice as you are, but tell yourself that you are important enough, and then just do it!

Which state are you going to? What base will you be in or near? Maybe I can help. My husband has friends in high places.
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08-05-2011, 10:01 PM   #14
Amylouio
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I'm so sorry to hear that.. I think that is so cruel, you have been suffering so long and that test could change the way you are trated, hopefully making you feel better... It is so frustrating how drs treat us, even in your case where you have red flag symptoms, just sucks.. so sorry.
08-06-2011, 11:48 AM   #15
allieinwonder
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Thanks Jessi. I will be going to the Atlanta area, and they just shut down the two Army bases there, so I am going to try and see if the air force base has a hospital/healthcare, and if not, I will have to drive south a couple hours to get help. I drive to a military hospital right now to get care, 3.5 hours away, so it wouldn't be any different in the states. I used to have tricare standard but they require tricare prime here! I'm going back on standard as soon as I can so that I can pick my own doctor!

Thanks Amylouio. I waited so long for the test itself, due to the fact they thought it would be a waste of money. Its at the point where I need to take it one day at a time, which I know we have all been there at one point or another!
08-07-2011, 03:47 PM   #16
Jessi
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So sorry. I asked my husband. He can't help you like I hoped he could. I really was hoping to help you. Tricare Standard really is the best choice for you.

Go to the doctor's office before you leave Germany and request a copy of your file. Those images would be very interesting! 55,000 photos is a lot! They should definitely show something, don't you think? I really hope they do!
08-07-2011, 05:11 PM   #17
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I live in the Atlanta area and use Tricare. I have NEVER had to go to an MTF for medical care. I have all civilian doctors. Call up TriCare and they'll be able to walk you through what to do when you get here. You might just have to temporarily change your region and you should have no problem getting in to see a doctor. If you for some reason want to pick up your meds from a base, Dbbins ARB in Marietta has a pharmacy. But I just pay the $3 at CVS for my Tramadol. Best of luck to you! Let me know if I can help you with anything in the area.

Edited to add: I too have Prime and its the best option for me in this area. Since there is no MTF, there is no requirement to go to one. I just have to go to a Tricare provider, but there are plenty in this area. It's so easy that I actually feel bad for people who have different insurance.
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08-08-2011, 04:36 AM   #18
allieinwonder
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Thank you both for the suggestions!

ThanksP, that is great to here that you have tricare prime in the ATL area! Atlanta is my hometown, and I had tricare standard before I moved here to Germany. We are required to use Tricare Prime here, since they don't want us using German doctors without a referral. My college is literally across the street from Dobbins, so it is awesome that they have a pharmacy I can get my meds at. What a relief! I will talk to tricare about all of this before I go so that I can see what my options are, since this is a very temporary situation. Yay!
08-08-2011, 10:58 AM   #19
ThanksP
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They can even help you with any tricare issues at the clinic on Dobbins. They were very helpful to me a few years back.

Small world, we moved here because my husband had orders to NAS Atlanta/Dobbins.
08-09-2011, 01:38 PM   #20
allieinwonder
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Heard from the patient advocate today, they said that I need to just go ahead and speak to the GI clinic directly and ask for a doctor to look at the pictures. I didn't hear from him until the end of the business day so I will be calling the clinic tomorrow! He also said I will need to schedule an appointment to get the results, and I'm hoping the new GI that takes a look at them will be as understanding as the first, and will go ahead and just email me when he's finished. Here's hoping!
08-09-2011, 01:44 PM   #21
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I hope that works out for you, Allie, and another doc will scan the images.

xx
May
08-09-2011, 01:46 PM   #22
Carrie630
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good luck, Allie! I hope you get the results quickly.
08-09-2011, 02:44 PM   #23
Cat-a-Tonic
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Good luck Allie! I hope you're able to get another doc to look at them and email you the results!
08-09-2011, 08:20 PM   #24
Jessi
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Glad you got through to someone! I hope it works out. Keep us posted!
08-09-2011, 10:31 PM   #25
ThanksP
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Best of luck to you!!! I used to be intimidated by military doctors, but when I realized they are just like anyone else, I became my own advocate. I guess that goes the same for civilian doctors. But military docs are much more intimidating because as a spouse, we don't speak all the military lingo or fully understand the chains of command. I learned they are no different. Although I was much more happy once I was able to see civilian docs exclusively. It's your health and your priority so they better get in line lol.

Oh, and if you don't receive satisfactory medical care there is a VERY effective way to make sure your voice is heard. The acronym is I.C.E. and it's quite effective in making sure the DoD knows what needs to be fixed. If you need it, lemme know.
08-10-2011, 07:20 PM   #26
StarGirrrrl
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Oooh that's fab news!
08-15-2011, 07:21 AM   #27
allieinwonder
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Good news from the GI! They are moving me to a different GI altogether. No more guy who is focused on Army stuff and thinks I wont accept IBS!

More good news - they want to have an appointment with me ASAP. They called my German # this morning, and my husband picked up (I am now in the states for the next four months), and he explained I was gone, and they are going to call my US cell and schedule a phone appointment. I am so happy they are working with me!

I am a little nervous as to why they want to see me/talk to me ASAP, but I'm trying not to get my hopes up. I'm still flaring, pretty badly, and I would love to FINALLY get some good help with this, but I don't want the heartbreak if the pill cam was normal!

Heres hoping this keeps working in my favor. I hope you all are doing well!
08-15-2011, 07:24 AM   #28
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This sounds very promising, Allie! Glad you got to ditch the bad GI, and I hope the phone appointment goes well and you are able to get the test results. Good luck and keep us posted!
08-15-2011, 03:56 PM   #29
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I hope you get in soon! Good Luck!
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08-18-2011, 06:47 AM   #30
dannysmom
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Hi ... Are you still waiting for your pillcam results?!? Will they not give them to you over the phone? My son got his the very next day.
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