Gastro's Office Wants To Talk To Me About the Pill Camera Endoscopy

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CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 1/8/2008 5:20 PM (GMT -7)   
She mentioned both the Pill Camera Endoscopy and the Double Balloon Endoscopy procedures when I was last in to see her. I told her I was interested, especially in the Double Balloon Endoscopy despite the need for the d*mn prep. And I would NOT do the Pill Camera Endoscopy w/o the dissolvable pill first to make sure it would pass. She said there was only one place in town doing the PCE and they didn't use the dissolvable pill so I said I'd pass until they do.
 
Well, today I stopped in to pick up a copy of the dictated results from the upper endoscopy we did last Thursday and darned if they didn't have an appointment scheduled for me for THIS Thursday afternoon to discuss the PCE and dissolvable pill and had just tried to call me to see if I could make it!!!! Couldda knocked me over! Like I couldn't get an office appointment for 2 weeks after I called when my gut was in trouble!! And that appointment was w/her NP. The doctor I couldn't get to see until Feb even tho I made it clear I needed help THEN, when I called. This appointment is also most likely w/her NP which is okay given its just to discuss the possiblity of doing a PCE.
 
Of course, curiosity killed the cat. I'm keeping the appointment naturally. Here's some questions I'm working on. Please add a few more if you think of some!!!
---------------------------------------------------
Just how much does the patient get to see of the results?
Only still pics of the computer chosen questionable areas?
How questionable an area?
I know these things take 1000s of pictures during their "trip". And I know that no human is gonna be paid to sit and look thru the entire "filming".
Does the doctor further eliminate computer questionable areas the doctor doesn't consider questionable?
How many of these dissolvable pills have failed to dissolve?
Is there anything in the dissolvable pill detectable by xray if it is suspected that it didn't dissolve?
Are you gonna insist on a colonoscopy type prep for this pill camera endoscopy. I've read of those having to do so despite its for the small intestine.

You sure you guys aren't just seeing your chance to perhaps hasten the surgery that Mayo, Cleveland, Dr XXXX and you have favored and suggested since 1999? *wicked grin* Pardon my not-always-trusting-mind.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 1/8/2008 5:30:07 PM (GMT-7)


Blue Velvyt
Regular Member


Date Joined Sep 2006
Total Posts : 194
   Posted 1/8/2008 6:01 PM (GMT -7)   
I did the pill camera endoscopy and had no problems passing it or having it run through me, it was not disolvable.

The film from it I am assured was watched by my GI (I certainly hope he looked at it)

went in in the morning, tool the pill got strapped up and wore it till day end and returned the hard drive belt, week or so later they gave me the results, ulcers, stomach linging deterioration in multiple spots, inflamation in my bowels and intestines......

They caught none of these things with the prep endoscopys, up until the pill, I was still a mentally unstable, drug seeking, attention getter....

I was thrilled with this no prep eaasy test which showed so much more then the other tests :)

I didnt actually get to see the film but my gi let me see pictures from it to show me the damage on his comp

Glad I did this test, not sure what would have happened without those results

FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 1/8/2008 6:14 PM (GMT -7)   
C2- sooooo cynical lol. That should be your new name. Do you have narrowing or strictures? If not, I wouldn't worry too much about the pill getting stuck. The hardest part for me was not eating, looking like a uni-bomber, and getting the darn adhesive off my body after. Mine came out fairly normal. The doc says he looked at all the images. Like you I find that a little hard to believe. He said he would make me a copy for my computer if I wanted. (I had asked). I never got it but I only asked that once and didn't follow up. I was going to make the guts slide show my new screen saver lol.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 1/8/2008 8:36 PM (GMT -7)   
I've had one resection, 30 years ago this March. I have a partial obstruction at the site of the resection in the mid-ileum and I have some narrowing or deformity in the terminal ileum just past the ICV which has had some minor inflammation in the past.

He said he would make you a copy for your 'puter and you never took him up on the offer?????? Be still my heart!

Man! THAT question goes to the absolute TOP OF MY LIST!!!!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/9/2008 11:11 AM (GMT -7)   
yeah  I love Fitzy's idea of turning your gut films into your screen saver...haha...that cracks me up. Thanks for making me laugh today!
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)


jdiane
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Date Joined Jan 2003
Total Posts : 1131
   Posted 1/9/2008 1:34 PM (GMT -7)   
If you already know you have a partial obstruction in the small bowel I'm assuming, and you don't want to have surgery or are trying to prolong a surgery, may I ask why you would be considering a CE? What is it exactly that your trying to find out?
 
 


sugarfoot
Regular Member


Date Joined Jul 2005
Total Posts : 138
   Posted 1/10/2008 12:08 PM (GMT -7)   

Blue -

do you remember how long it took your pill to pass?  I did the test on Monday & haven't seen it yet.  Altho it's kinda hard to see, i'm flaring & seeing a lot of cloudy mush (sorry, TMI, ha).  I'm irritated with my dr's office for giving no instructions. 

thanks


24 years old
Crohn's Colitis - officially diagnosed Feb. 2005
(Asacol, Imuran, Folic Acid, Iron, B12 shots)
Interstitial Cystitis - 2002
(Elimiron)
Raynauds - 2005
(mittens & space heaters, for now) 
GERD & hiatal hernia - July 2007
.::I can do all things through Christ who strengthens me. Phillipians 4:13::.
 


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/10/2008 1:01 PM (GMT -7)   
jdiane said...
If you already know you have a partial obstruction in the small bowel I'm assuming, and you don't want to have surgery or are trying to prolong a surgery, may I ask why you would be considering a CE? What is it exactly that your trying to find out?

 
Because I normally get along just fine w/that partial obstruction that is scar tissue from the surgery 29 year ago.
 
We/"I" wanna know about inflammation at or near that partial obstruction (is there any) and the inflammation seen during the recent colonoscopy via just a peek thru the ICV since the scope couldn't pass thru into the terminal ileum altho it has in the past.
 
The inflammation seen thru the ICV was minor and shouldn't have been contributing to the symptoms I've been encountering. Is there more intense inflammation or ulcerations further into the terminal ileum than could be seen?
 
And is there disease activity elsewhere in the ileum? So far there have only been those two areas of disease involvement. Crohn's disease usually skips "up" the intestine, not down.
 
I'll post about my visit w/the NP later, after I've had a chance to go over and digest the printed material she gave me.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


schoolgirl
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 1/10/2008 1:05 PM (GMT -7)   
I took the pill camera in August - I did have to do a prep but it was half the usual amount as for a colonoscopy.   My GI doc's partner looked at the pics - I'm assuming he spent about a full day looking at them, or at least several hours, since he charged my insurance about $2k to do it.  He must have more time on his hands than her LOL. 
 
I did not get any pictures since they said it takes special software to see them and they can't just simply put it on a cd, 'cause our computer wouldn't read it ( I did ask ).  But a print out would have been cool to have of at least the damaged area.   The report I got said it took about 25 minutes for the pill to pass from the stomach to the small intestine and then about 6 hours for the journey through the small intestine.  I never "saw" it pass, but I haven't worried about it, with the more than successful process of elimination my body goes through cool    The paperwork said if there is any doubt if it has passed and you are going to have a ct scan, they can do an xray to confirm.
 
It looked big when they gave it to me, but wasn't hard to swallow.  the worst part was being tressed up like a unibomber.
 
If I had strictures, I guess I'd have been a lot more worried about the passing part.
 
The GI said they were able to see my entire small intestines and pinpoint exactly what area the damage is in.  Which is really cool since it turned out to only in the lower part and not spread extensively.
 
Hope this helps!
Dx with Crohn's Aug 2007; celiac sprue July 2002; Type II diabetes Nov 2006.  Current meds: Entocort , Asacol, Levoxyl, Fosomax, various vitamin supplements.


jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1131
   Posted 1/10/2008 2:07 PM (GMT -7)   
Hmm, maybe you could try a dose of Pred to reduce inflammation and see if the symptoms reduce? Generally, it is said when using a CE to check for strictures in the small bowel, if it gets stuck, then you prolly need surgery to begin with, and they will surgically remove. If you already know there is a partial obstruction and you DON'T want surgery, I wouldn't chance it. However, if you go high dose steriods and symptoms don't reduce, chances are your dealing with scar tissue to begin with. That's been my experience anyway...... Good luck to ya!


 
 


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 1/10/2008 3:33 PM (GMT -7)   
Thanks, JDiane. BUT - I'm not a pred fan. In fact, I have to be in pretty bad shape to agree to a fast tapering dose of pred. I've been fairly lucky at dodging the pred bullet and intend to continue dodging it as much as possible.

I would NOT agree to a PCE in my situation UNLESS we do the dissolvable pill test first and if that is successful then you bet your bippy I'm gonna do the PCE. The only question would be when? Now, after a tapering dose of pred and doing good - or waiting for the next flare? I suppose it is wisest to do it when NOT in a flare ... on the other hand I would/will be MORE THAN PO'D if nothing or only minimal inflammation showed up in just the two known sites. I think. I mean if it missed a new site of just minimal inflammation so that we aren't aware of that new site ......

Anyway, I started a new thread w/the info I obtained today about the dissolvable pill, the Agile Patency System, also by Givens Imaging.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


stormnation
New Member


Date Joined Sep 2007
Total Posts : 7
   Posted 1/10/2008 6:44 PM (GMT -7)   
I swallowed the camera, non-dissolvable, and it got stuck. I had no strictures, it's just the inflammation in my gut was so bad, the camera could not pass. I had a 4 day hospital stay and many steroids and anti inflammatory drugs to get my intestines relaxed enough it could pass out. Finally took a laxative and had a colonoscopy to get it out. Good luck to all who try this, I would insist on the dissolvable kind though.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/10/2008 7:26 PM (GMT -7)   
The Agile Patency System "is" a dissolvable pill. It is NOT the Pill Camera Endoscopy itself. That is done later IF the APS capsule passes thru okay.

I need to know whether there is inflammation elsewhere in the small intestine AND how bad the inflammation to know just how "serious" a med we need to stop the inflammation in its tracks. If it is just the two known areas and/or just mild inflammation then that pred tapering dose, the Imuran upped a bit and the Pentasa "should" take care of it. If not, then I need to weigh the risks of a more serious medication regimen. The biologics are out due to my lungs. And even if they were an option the degree and amount of inflammation would be the deciding factor in whether to try one of them or not.
 
And the possibility of encountering your experience, Stormnation, is why I've already come to the conclusion that the APS is a go. It just took a while for the light bulb to come on. Duh.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 1/12/2008 1:51 AM (GMT -7)   
I had the capsule endoscopy done in August. It was a big decision for me because I did the dissolvable capsule test twice.. and both times it was shown not to pass. But I was having so much pain that my doctor and I discussed it and felt that it was worth the risk of having a possible surgery if the pill got stuck in a stricture. He and I felt that if it got stuck, then we would at least know what it was getting stuck in. Luckily though, it passed. I never saw it pass. They x-rayed me though about a week later and it was definitely out. You won't know based on the camera images as it stops recording after 8 hours. I know my doctor watched the entire video/recording as it took him quite a while to have the complete results. His wife, who works at his office, explained to me that he watches it in small segments. Also, I'm one of the few that had to do prep. Because there was such a high chance that it wouldn't pass for me, they wanted to do the prep to ensure that nothing would be "in the way." Anyways, I believe there was a questions asked about whether there is something in the dissolvable pill that you can see in an x-ray. And the answer is yes. I did my first dissolvable capsule at Mayo in AZ (I live here..) and they used a wand the next day to see if it was out. Kind of like the thing they use at the airport. And it beeped.. so it was still in me. The second time I did it at another hospital. They didn't have the wand, and instead used an x-ray. The x-ray showed that the pill was still in me. But you have to realize that the dissolvable pill is just that, disolvable. So you will have no real idea based on that how long it would take to get out of your system. It's possible that even with all of my D things somehow move kind of slow in me. :) But I really think that you need to base your decision on what you want to get out of it. If there is a risk of a stricture and you don't want to go the surgical route, then maybe try the more aggressive meds. I made a decision based on how I felt personally and just knowing that I had to get this under some sort of control as I'm in law school right now. So I decided to risk it and go ahead even though I didn't know if it would pass. But I'm not sure that it would be the wisest decision for everyone. If you have more questions, I'll help if I can.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/12/2008 5:23 AM (GMT -7)   
Thank you all for your comments.
 
Yeah, the more I think this thru I realize I will almost guaranteed HAVE to do a prep as my "normal" course of events right now is a BM every 3-4 days. D*mn!! *sigh*
 
If I've gotta go thru the prep I'd rather do the double balloon endoscopy - but - I'd have to go to U of M for that, meaning some strange gastro (maybe - or even some gastro student or at least someone just learning how to do the double balloon endoscopy, no guarantee of an experienced DBE gastro doing the procedure).


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 1/12/2008 5:27:56 AM (GMT-7)

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