Pill Cam Results

[allieinwonder]

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!!

 

[Cat-a-Tonic]

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!

 

[Lisa]

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???

 

[allieinwonder]

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?

 

[Crohn's Mom]

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.

:ghug::ghug::ghug:
~T~

 

[allieinwonder]

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!

 

[Crohn's Mom]

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

 

[StarGirrrrl]

That sucks! I'm sure if you were told Sep 1st before you would have been happier than you are now.

 

[Carrie630]

:ymad: 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.

 

[Jessica]

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

 

[allieinwonder]

Aww no need to get so worked up Tracy, you have so much on your own plate! 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.

 

[Carrie630]

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.

 

[Jessi]

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.

 

[Amylouio]

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.

 

[allieinwonder]

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!

 

[Jessi]

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!

 

[ThanksP]

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.

 

[allieinwonder]

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!

 

[ThanksP]

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.

 

[allieinwonder]

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!

 

[Mayflower537]

I hope that works out for you, Allie, and another doc will scan the images.

xx
May

 

[Carrie630]

good luck, Allie! I hope you get the results quickly.

 

[Cat-a-Tonic]

Good luck Allie! I hope you're able to get another doc to look at them and email you the results!

 

[Jessi]

Glad you got through to someone! I hope it works out. Keep us posted!

 

[ThanksP]

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.

 

[StarGirrrrl]

Oooh that's fab news!

 

[allieinwonder]

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!

 

[Cat-a-Tonic]

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!

 

[Omaklackey]

I hope you get in soon! Good Luck!

 

[dannysmom]

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.

 

[Mayflower537]

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.

That's pretty awesome. And unusual, as far as I know. Seems like for those of us who had the test, several weeks was the norm.

 

[allieinwonder]

They finally got in touch with me today...just to say they can't have any other GI look at them. Looks like my lucky streak is over! I have to wait until My GI gets back September 1st, then they said they are going to have him look at the results ASAP, then call me.

Man, they made it seem like they were ready to go and had something for me! Oh well. :/

 

[StarGirrrrl]

Allie what a dissapointment for you

 

[allieinwonder]

Yeah I know. With the way that they were talking to my husband I truly thought the pill cam had showed the issue and I had finally gotten answers. I mean, of course that can still happen.

I'm still having issues with my prescriptions here, but I just went through my walgreens account and figured out I have refills left here from before I left! My GI here had sent in 6 refills of tramadol...I'm totally set! I'm so relieved that I had this waiting for me when I got here, because tramadol is the only reason I am eating the little amount I am, and keeping me pain free for about 6 hours a couple times a week...now that I have some refills on hand I can take it a little more often without feeling so guilty..phew! I have trouble taking it because I feel guilty, and I'm afraid I will run out, so I'm hoping this will all work itself out soon.

 

[dannysmom]

I am sorry this is such a long wait for you! Looking through the hundreds of pictures does take a long time to do properly. I guess we were lucky because our hospital had a new doctor that seemed to specialize in pillcams and did this all week long for one patient at a time. So there was plenty of time to look through the previous patient's photos while the current patient wears it for 8 hours.

 

[Cat-a-Tonic]

Allie, that's awesome about having so many refills left! Hopefully that will get you through with a minimal amount of pain until your doctor finally gets you those results.

Danny's mom, it sounds like they do a lot of pill cams at your hospital! At the hospital I go to, they said they usually only do about one pill cam per month. I'm not sure if that is typical or not. It seems to me like pill cams aren't super commonly done, I know a few people with IBD in real life and none of them have had a pill cam.

 

[allieinwonder]

Yeah, my hospital is the same way, they only do them about once a month. The guy who put it on me was having to use the diagrams and instructions since they don't do it often! I knew when he said two days he was being overoptimistic. I'm not too upset, just hoping when I do finally get my results they finally show the issue!

 

[Jessi]

This is just taking WAY too long, Allie! I am so frustrated for you. Maybe you're a lot more patient than I am?

 

[Daunting]

Any news

Hi Allieinwonder

Any news yet, you had mentioned September first for your pill cam results.

Do we know anything yet?

Wishing you the best.............

 

[mike316atl]

Interesting. While I was admitted 2 weeks ago they analyzed my results in about 3 hours for the pill cam.

 

[allieinwonder]

They still haven't contacted me.

Because of the time difference (me being in Atlanta, them being in Germany) I am having my husband call tomorrow to remind them that this is urgent. If that doesn't work, I will hound them until they look at the 55,000 pictures they have of my small intestine

Mike, my doctor went on temporary assignment two days after my pill cam. He said he would analyze the pictures in that time, but said he couldn't get them in time. He got back September 1st, then they had a four day weekend for Labor day. So uesday was really his first day back, or so I'm assuming.

I am really frustrated at this entire situation. I'm not doing well, and the only reason I haven't gone to the ER in the past couple of weeks is because I'm waiting on these results. Whether it is Crohn's or not, something is wrong, and it needs to be taken care of....I am feeling really crappy because of my doctor acting like I am not a priority and this is no big deal...

 

[littlemissh]

Fingers crossed you hear something today. Waiting for test results is tortuous.
I'm not sure whether to wish you luck that it is negative or hope it shows something so you can be treated...but good luck anyway!

 

[allieinwonder]

I didn't hear anything today either. I haven't talked to my husband, so I don't know if he remembered to call or not...I think I need to get up early tomorrow and call them myself. At this point I'm not waiting every day for results, they will come when they come.

I understand littlemissh, its hard to wait. I'm having a hard time because I really want the correct treatment. As for wishing for good or bad results, I'm hoping for Crohn's evidence. My husband puts it best, something is wrong, and I just need proof. My GI mentioned it possibly being another autoimmune illness, especially Lupus, so if this comes back normal I'm getting another dr's appointment here in the states ASAP to get tested for that. I'm at the point where I'm in bed if I have nothing going on, and being in a sorority house..it makes me feel like a loser! I learned early when I came back my body is too weak to be as active as normal college students. It really sucks!

I feel like those people on mystery diagnosis.....7 years so far...I need a diagnosis NOW!

Sorry I sound so mopey. I'm just really down about how this ended up. I have lost my faith in all doctors after the past 5 years of mistreatment. I just wish I knew a great doctor around here that I could go to and that would help me, without this "well your tests are all normal, so this must all be in your head" crap.

 

[Daunting]

My understanding

I complete understand how you are feeling Allieinwonder. Please know that you are not alone. I have been to 2 Gi's and 1 Internist and none know what is wrong with me neither.
There has to be hope for us some how and somewhere.

I myself have been wanting to give up for a while now, but I have a great job and a wonderful husband and two little puppies.
And sometimes I think those are the only things forcing me to stay around.

I am wishing you the best Allie, Hang in there things have to get better for us sometime or another

 

[allieinwonder]

Well, my GI finally got back to me.

"I am writing to inform you that the capsule endoscopy study performed for
Alisa Erkes was normal. Sorry about the delay."

I am devastated. I surely thought this would show the issue. I've been crying like a baby since I got the email.

This can't be IBS. IBS would not cause joint pain, weight loss, and no solid BM in months, even with the constipating effects of tramadol.

I've decided I'm going to see a Rheumatologist here in Atlanta as my next step. My past GI, who saw most of my symptoms, believed it could be Lupus or another autoimmune disease. So I guess I'm going to take that step next. Something wrong and I need it fixed. I just don't know how I'm going to face another doctor with all of these normal test results...

Please don't think I'm crazy...

 

[Carrie630]

Oh Allie, I'm sorry, that sucks I doubt any of us think you're crazy!! we're all in the same or similar boat. I hope you get better results with the rheumatologist.

 

[Daunting]

:ghug: I'm so sorry Allie. I don't know to be happy that there is no damage to your intestines or to be sad that there is no treatment for you.

Best of wishes for you and keep us updated.

 

[StarGirrrrl]

Of course we don't think you are crazy. I am so dissapointed for you As upsetting as no answer is, maybe this can finally close the door on Crohn's. I've always said I can't without a Pill Cam.

A Rheumy is a great idea. Mine has been much more helpful than GI.

 

[Volcom]

I have been following your storey since being here. I am so sorry for your result, my heart seriously snapped when i read this You poor thing, I really do hope you get some answers with your next specialist xo

 

[Omaklackey]

Have you ever had a diagnostic laprascope with an Gynecologist? Because Endometriosis of the bowels can cause all the symptoms of Crohn's disease. I was pretty convinced I had Crohn's but found out my bowels were covered in Endometriosis. I'm hoping now that its been that causing the issues all along. My endometriosis specialist said it should have caused it, and hopefully now that she has excised my bowels can start being normal!

 

[allieinwonder]

Thanks for the responses.

Omaklackey, I haven't. I went to my OBGYN first when this all started, because I had ovarian cysts (2 on my left ovary, one ruptured) January of 2010, so I thought it was related to that. They did a trans-vaginal ultrasound and said everything was fine. I thought that was enough to rule out any diseases of that area, but I am going to see my OBGYN and see if there is anything else that might be going on. My pain is very high up though, right next to my left rib.

 

[Omaklackey]

The ONLY way to diagnose endomtriosis is with a laprascope. Those cysts might have been endometriomas, were they taken out, biopsied or anything? If they are endometriomas they will not go away until they are sugically removed. They will burst causing great pain and then fill right back up again. They really suck!! I had so many of them. Make sure you find a really good GYnecologist though who is knowledgeable about endometriosis!

 

[allieinwonder]

No, they were only diagnosed via a CT scan and then I was sent away, and then my OBGYN put me on birth control to keep them from coming back.

That doesn't sound nice as all!

 

[dannysmom]

I understand too ... hang in there. The pillcam does not do biopsies so cannot see microscopic issues AND it cannot see issues outside of the intestines. Keep pushing. A rheumi screen sounds good.