Pillcam results question

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MayOK
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Date Joined May 2010
Total Posts : 111
   Posted 5/11/2010 10:29 AM (GMT -7)   
Hello, Everyone,
 
I am new here and not yet diagnosed.  On Friday, my GI doc's nurse called me and told me that everything was fine with the pillcam - no crohn's showed up but i did have one area of narrowing in my esophagus and if i started to have trouble swallowing that they could stretch it with an EGD, some endoscopic procedure.  she also told me i don't need a follow-up or anything.  i don't know if that was my doc's intent or not...
 
then i requested a copy of the report for my records and here is what it says:
 
"there was an area of narrowing of normal mucosa in the duodenum which the capsule hung up on and revluxed back into the stomach.  otherwise no appreciable abnormality.  EGD to assess proximal small bowel as above."
 
she also writes "when does patient need EGD?" and he writes back "routine."
 
so the nurse totally botched that message.  Glad i requested a copy of my results.  Geez!!
 
anyone know what normal mucosa narrowing means?  i thought narrowing was always a bad thing...

MayOK
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Date Joined May 2010
Total Posts : 111
   Posted 5/11/2010 7:41 PM (GMT -7)   
bump
:)

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 5/12/2010 5:35 AM (GMT -7)   
I think it might be a good idea to get another opinion from a different doctor.
You need to know what is causing that narrowing.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


kazbern
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Date Joined May 2010
Total Posts : 8375
   Posted 5/12/2010 7:26 AM (GMT -7)   
I had narrowing in my esophagus a few years ago. My GI attributed it to reflux, but in my opinion it was a CD stricture. He opened it with a balloon, and put me on nexium. I had another endoscope last year and my esophagus showed no inflammation, but I had inflammation in the stomach lining. I'm probably being stupid, but I stopped taking the nexium a few months ago - it is expensive and I still had heartburn, so I didn't see the point. I think I need another kind of med for reflux, just haven't gotten around to it yet.

It took quite a bit of complaining on my part to get my GI to do the dilation procedure. In fact, it was only when I said I could not swallow my pentasa that he got alarmed.

ZenaWP
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Date Joined Aug 2007
Total Posts : 884
   Posted 5/12/2010 9:04 AM (GMT -7)   
MayOK, I can't answer as to what your results mean, but I had a similar situation with the results of my capsule endoscopy.  When I called for the results, the doctor's assistant/office manager called me back and said it didn't show anything.  A month or two later, when I went for a follow-up visit, the doctor said something about the Crohn's and the ulcers and I was like, "um, what?"  So yeah, the test showed ulcerations which led him to the Crohn's diagnosis, but I sat there for another month or two without treatment (and was VERY sick at the time) because the lady didn't know how to read.  I ended up leaving that GI and when I asked for a copy of my medical records to take to my next GI, they "lost" the images from the capsule endoscopy and were never able to find them. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


MayOK
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Date Joined May 2010
Total Posts : 111
   Posted 5/12/2010 4:39 PM (GMT -7)   
Yeah, I scheduled a follow-up with him tommorow b/c of this confusion (the nurse told me I didn't need one, but not sure if she knows anything now!), and I also want to ask how I would know that I was having trouble with this narrowing? It's NOT my esophagus so swallowing clearly wouldn't have anything to do with it. Why would I ever need a routine EGD? All questions for my doc...I know.

I can't believe doctors pay these people to tell patients the total wrong thing!! I'm going to let him know (in a non-tattle tail way) what she told me. He should know that she totally messed up that message.

I also have scheduled an appointment with a different GI to review my results and get his opinion on things. Not b/c I don't like my doc, but just to let another set of eyes look over everything. Aren't there things scopes can miss?

Zena - That's crazy!!! Makes you wonder if they sometimes so careless that they look at the wrong people's paperwork or something.

At least here in the States, we are free to fire them at will. :)

Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 5/12/2010 6:34 PM (GMT -7)   
It doesn't sound like they were misleading. The results basically say that there is an area that is narrowed, but the mucosa (lining) is normal. So that means that there's not inflammation in the area, just narrowing.

I don't know how old you are, but some people as they get older just get narrowing in their esophagus and require dilitation (stretching) of the area. Some people just have it once, then they don't have problems again.

Had they said there was inflammation AND narrowing rather than just narrowing and normal tissue, I would assume it was crohn's related, but plenty of "normal" people have narrowing of the esophagus.

The fact that they have you listed for "routine" EGD follow up is standard. I would guess that if you started to have problems with feeling like food was getting stuck going down, it would warrant another endoscopy, but as long as you don't have new symptoms, it seems ok to me that they aren't scheduling follow up.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 5/12/2010 6:59 PM (GMT -7)   
I don't think they are trying to be misleading - the nurse is just ignorant. It isn't my esophagus that is the problem - as the report says, it's my duodenum, which is the first part of the small intestine. The nurse told me the completely wrong thing. Swallowing would not have anything to do with that. The report says the capsule refluxed BACK into my stomach.

In fact, I called back just to try and talk to my doctor, but they sent me to the nurses station (I guess they filter everything through them) and I left a message saying such. Then, the same nurse called me back and asked me what my confusion was - I said that I thought she had told me my esophagus was where the narrowing is but it was my duodenum. She tells me that the duodenum is at the base of the esophagus at the beginning of the stomach. I even tried to give her an out, saying that I thought the duodenum was the first part of the small intestine (which it is) and she said, "No." This is a problem of somewhat basic anatomy. If she doesn't know what the heck a duodenum is, then she better just stick to reading patients their results and not trying to put it in her own words.

mom-who-hurts
Regular Member


Date Joined Mar 2010
Total Posts : 28
   Posted 5/12/2010 7:20 PM (GMT -7)   
Mayok, I totally follow what you are are saying regarding the nurse.  She has  now misled you two times (due to ignorance) about your results, first with saying it was your esophogus, and second, saying the duodenum and esophogus were one in the same...YIKES!!  I wonder if the narrowing in the beginning of your small bowel is from previous inflamation...maybe not currently inflamed but a place where you have had problems/maybe Crohn's flares previously??  Just wondering....
 
I hope your visit tomorrow goes well.  Keep us posted.

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 5/12/2010 8:36 PM (GMT -7)   
Yeah, that is basic anatomy. I misread what you had typed and thought they were talking about your distal esophagus. I'd call and insist that the doctor call you back. I hate having to go through a nurse only for half the infomation and questions I asked actually be passed on the dr. Though, the fact that there isn't inflammation in the area still is a good sign...now just to figure out why you would have a stricture in your duodenum??
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 5/12/2010 8:43 PM (GMT -7)   
Oh, and maybe when you see your doctor, you could ask if when you have test results, you would prefer that the doctor call you instead of the nurse to avoid confusion. It helps sometimes, but sometimes the doctor won't do it. My doctor doesn't call with results, but if I ask too many questions, I'll usually tell them "or have her call me" and usually the dr calls and will settle all the questions easily without the back and forth mess.

Hope things go well tomorrow!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 5/13/2010 5:31 AM (GMT -7)   
That's a good idea - asking him to personally give me results.  It's kind of weird tho, b/c with all my previous tests they sent me this nice little letter that he had signed giving me the results (good or bad news, didn't matter).  So I don't know why nurse dum-dum called me this time. 
Yeah, I have several loose ends to tie up with him - I had 2 polyps when they scoped me, and as I'm only 29 I don't know what that means as far as frequency for future colonoscopies.  Assuming I will have to come back before I'm 50...Then why is the narrowing happening?  And how will I know if it gets worse?  Will food back up into my stomach?  And assuming also that he has decided I don't have Crohn's should I just proceed as if its just IBS?  Yes, lots of questions. 
I am slightly annoyed that I had to schedule the follow-up.  At the very least, he should assume patients would want some type of closure.  Esp. after a postive IBD serology from Prometheus.  Not that it's the gospel truth, but still at 90ish percent accurate (i believe), the false positive possiblility is a little difficult to swallow.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/13/2010 6:08 AM (GMT -7)   
Did you do a long EGD? The 18 foot scope yet?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 5/13/2010 6:58 AM (GMT -7)   
Saw my original GI today. He said there was definitely something that the pillcam kept getting hung up on in the duodenum as the capsule kept getting bounced back repeatedly until it finally got through. He said there could have been some past disease activity that left some scar tissue, although he still isn't totally convinced I have Crohn's (I am assuming due to my overall lack of symptoms). So I'm scheduled for an upper endoscopy June 1 (I don't know if that's the 18-footer or not?). I am so glad that I didn't listen to the nurse who assured me that I did not need a follow-up. Always talk to your doc. That's my advice for the day. And I cancelled my appt with the other GI b/c my doc still hasn't written me off as IBS, contrary to what I thought. So that's that.

mom-who-hurts
Regular Member


Date Joined Mar 2010
Total Posts : 28
   Posted 5/13/2010 8:07 AM (GMT -7)   
Glad to hear your doc is still on board at getting to the bottom of it all.  What a relief.  Did you mention to him what the nurse said?  I had two polyps at my colonoscopy too, and they turned out to be the kind that can eventually turn into cancer.  He said I have to have another scope in five years.  Did he address that with you?

MayOK
Regular Member


Date Joined May 2010
Total Posts : 111
   Posted 5/13/2010 11:14 AM (GMT -7)   
Honestly, I had written it down to mention it to him, and forgot to look at my list!! about the polyps, that is - but mine were the kind that don't turn into cancer (polyplastic, i think?). I will be sure to ask him at my next follow up. I mentioned the nurse's snafoo, but he didn't really say anything. Probably didn't want to be unprofessional. He acted like it was perfectly natural that I was in there for a follow-up, so I think there was some serious miscommunication b/t the two of them or she just assumed that I didn't need one. Glad I went in, tho. Made me feel a lot better about him as a doc - I was thinking that he was done with me.
Are you young also? My dad had 10 polyps at his first c-scope (don't know what type of polyps they were) and his GI told him to come back in 2 years, and then at 2 years he only had 2 polyps so he got a 3 year reprieve. So apparently it runs in the family. Lovely.
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