02-21-2018, 01:17 PM   #1
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
Capsule Endoscopy

Capsule endoscopy is scheduled for Friday and I am concerned about how much experience our Pediatric Gastroenterologist Doctor has in this. he said that after midnight she should have nothing to eat or drink. I have heard that it is the same as with a colonoscopy that Miralax and liquid diet is what she should have the day before so I am very concerned. Has anyone else had this done and what was the preparation? Thank you
02-21-2018, 04:25 PM   #2
emmaaaargh
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Not a parent, but I have had a capsule endoscopy without prep before (when I was 11 or so) - whether or not they want you to take a prep depends on the doctor, but it's done both with prep and without prep. I had to fast (can't remember how long for, because it was years ago now!) and could not eat until 4 hours after I had swallowed the pill cam, but after that I could eat and drink as normal. Images were good and I was very relieved at not having to prep!
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02-21-2018, 06:24 PM   #3
Maya142
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We did not have to do a whole prep, like the colonoscopy prep. Just had to fast after midnight.

Good luck!
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dx with JIA at 14
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02-21-2018, 10:58 PM   #4
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We did not have to do a whole prep, like the colonoscopy prep. Just had to fast after midnight.

Good luck!
This was my daughterís experience as well.
02-21-2018, 11:04 PM   #5
Maya142
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Wanted to add - she was not allowed to eat till lunch time the next day and even then she had to eat something light. She was starving by the time she got eat a real meal!

The pillcam is like a big pill (a little bigger than Pentasa if your kiddo has been on that) but my daughter had no trouble swallowing it.
02-23-2018, 09:28 AM   #6
Jabee
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Iíve had several and never had to do any prep. I just tasted from @noon the day before (water was okay up until midnight before my appointment). While the capsule was moving through my system I was allowed only clear liquids.
03-04-2018, 08:00 PM   #7
amw2003
 
Join Date: Jun 2017
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Capsule Endoscopy done on Friday, Feb. 23 and still no results. Hospital said they snail mail disc to Doctor and he should have on Tuesday. Doctor's office said they never get anything mailed to them as they do not have software to read it and Doctor would have to make special trip to view or we have to wait till March 13 when he is scheduled back there. yet he was there March 27 and no one told him. Cannot believe the incompetence of everyone involved. Also I heard it takes a few hours to view and now I am wondering if a doctor will know what he is looking at or will rush.
03-04-2018, 08:23 PM   #8
Maya142
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That is bizarre - have they ever done a capsule endoscopy before? It seems like they don't really have a system for reading it.

I have also heard it takes a few hours to read.

For what it is worth, my daughter's pillcam was not read by her GI, but by another GI at the children's hospital who is the head of the IBD center.
03-04-2018, 08:49 PM   #9
my little penguin
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Our gi read my kiddos capsule endoscopy
But itís 6 hours of video that needs to be reviewed
It was done at the kiddie hospital
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03-13-2018, 07:21 PM   #10
amw2003
 
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GI Doctor told me he did not see anything on capsule endoscopy but that she had liquidy stools and hard to see part yet she did not have diarrhea before or after test. I have a feeling he reviewed very quickly. From my research it is best to get a second opinion or to have doctor look at it slowly. He also said that perhaps she has a "blood disease" and to go to a hematologist. She has had Crohn's for two years and is on Remicade every 6 weeks but wants her to go more often. has had over 8 iron transfusions and still has a Ferritin level at 2 or 3. I think this Doctor is more "laid back" about things. Not sure what to do now: take her to hematologist or to Mayo Clinic since they may have more experienced Doctors but much further to travel. I think he is missing something
03-13-2018, 07:34 PM   #11
crohnsinct
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You have to have trust in your doctor. If you don't, I would pursue another opinion.

What is the GI basing his/her opinion for shortening schedule on? It is not uncommon for some kids to be on as short a schedule as every 4 weeks. It all depends on how quickly you metabolize the drug so if your daughter's Remicade level is low at the 6 week schedule then shortening is probably not a bad idea. My older daughter needs 10mg/kg every 4 weeks.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
03-13-2018, 07:46 PM   #12
amw2003
 
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Remicade is not staying in her system. I am not concerned about that. Concerned about the anemia and iron not helping.
03-15-2018, 11:16 AM   #13
Maya142
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I would definitely see a hematologist. My daughter turned out to have a trait that can cause chronic anemia. It is genetic and runs in my family. It was not the reason for her low Ferritin though and when she had iron infusions her Ferritin went right up

But it is definitely helpful to see one.

I would also get a second opinion from a different GI since it seems like you don't really trust yours. A second set of eyes has always helped us - we have gotten lots of second opinions.

I'll tag DanceMom, I think she has an excellent pediatric GI in Florida.
03-15-2018, 11:28 AM   #14
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
The anemia started with the Crohn's. I have exhausted every GI in our area that takes our insurance. I do not think the one we have now is that great but many are not. I do want to find someone else to read the capsule endoscopy but whom is going to spend so many hours for free?
03-15-2018, 05:13 PM   #15
my little penguin
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Second opinion
Means you send all her records including imaging etc
To another place
Top three hospitals
Chop(Philadelphia)
bch(Boston)
cchmc(Cincinnati)
Will do a records review
Meaning they look at everything and then tell you what they think
No need to travel
They have coordinators who determine if your insurance is accepted

Then you take the results to your current GI
No need to switch
They typically follow the recommendation of the second opinion hospital

Most GI like the second set of eyes
Itís all good
03-15-2018, 05:29 PM   #16
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
I have the Florida KidCare Healthy Kids Insurance which will not be able to be used out of state and also has to have referrals for specialists.
03-15-2018, 06:38 PM   #17
DanceMom
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Records Review is usually paid out of pocket anyway. Check into it.
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Treatment: Hizentra, Flovent, Zyrtec, Cellcept
03-15-2018, 06:42 PM   #18
amw2003
 
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I barely have money for gas to orlando, cannot pay anything out of pocket
03-15-2018, 06:51 PM   #19
Maya142
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I think this Doctor is more "laid back" about things. Not sure what to do now: take her to hematologist or to Mayo Clinic since they may have more experienced Doctors but much further to travel. I think he is missing something
You mentioned Mayo Clinic - could you take her there?
If you call the hospitals and ask about financial aid, maybe they could help? They can help you apply for assistance.
03-15-2018, 07:00 PM   #20
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
Mayo Clinic in Florida does not treat pediatric cases for gastroenterology, called them and found this out.
03-15-2018, 07:28 PM   #21
my little penguin
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Our record reviews out of state (had more than one ) were completely covered by insurance(private insurance)
Online record reviews -Bch has this -are not covered by insurance any insurance and are out of pocket

A lot of times if you call to ask the coordinator can tell if itís civered
There is some weird thing that covers itís for out of state insurance
Especially at the big hospital
Definitely worth the call to the 2nd opinion coordinators
They handle these cases all the time
Some sorta of mutual agreement between state based insurances

Please ask the actual coordinators at Bch /chop /cchmc
Because I thought the same thing ...
I know of someone else who did it that way and was very surprised
03-15-2018, 07:56 PM   #22
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
Thank you for the advice, I will look into it.
03-16-2018, 06:43 AM   #23
DanceMom
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I think I recommended a Nemours physician to you before, though I could have you confused with someone else. Can you go to Nemours? I realize that money is often an issue in caring for our children. I'm currently paying over $800/month for A's infusions. But sometimes we have to do what we have to do to keep our children alive. Speak with a social worker or financial rep at the hospital you'd like to go to. Ask friends/family for help. Start a GoFundMe. Take out a loan. Keep us posted.
03-19-2018, 06:54 PM   #24
Lynda Lynda
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I barely have money for gas to orlando, cannot pay anything out of pocket
Don't give up. ♡
03-21-2018, 11:27 AM   #25
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
fecal occult blood test came back positive, calprotectin was only 90 and hematologist does not think she has a blood test but rather that she is bleeding from somewhere due to her past blood tests, ran new ones but results will not be in till next week. GI does not seem eager to do any further testing or solve the mystery not confident he read capsule endoscope properly still. hematologist wants to give her more iron but says GI they should find the cause instead of giving so much iron. GI previoulsy said that when inflammation is under control then iron levels would go up which has not happened. Ferritin 2-3 and hemogloben usually a 7 or so. Whom do I call at out of state teaching hospital to ask about finding a doctor to read capsule?
03-21-2018, 02:45 PM   #26
crohnsinct
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HGB of 7?! At our children's hospital they do blood transfusions for under 7. Unless your lab is looking at a different measurement I would expect your GI would be hopping to at this point. What is her hematocrit? Albumin? CRP and sed rate?
03-21-2018, 03:00 PM   #27
Lynda Lynda
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I had a blood transfusion in 2009 when my hemoglobin was 4.6 and I went to the hospital and spent the night and they gave me two units of blood, during the transfusion the hospital staff took blood samples to check my hemoglobin. When I left the hospital my hemoglobin level was at an acceptable level. ( I think that on my twice-yearly Comprehensive Metabolic Panel blood test my "sed" rate is checked and listed on the blood test results. )
03-21-2018, 04:12 PM   #28
Maya142
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I would also guess she is bleeding from somewhere, probably in the small bowel. That is essentially what the hematologist told us when we went - that the only way my daughter's Ferritin could have gotten so low is if she was bleeding from somewhere.

Our hematologist and GI would also do a blood transfusion if hemoglobin was 7. The hematologist said under 8 and he would do one ASAP. But they do need to figure out the cause of the bleeding.

I really think you need a second opinion - have you called CHOP and BCH or Cincinnati Children's and seen if they will do record reviews? In that case they would review her scopes, her pillcam and everything else. Like MLP said, they can be covered by insurance, and if it is just a record review, you won't have to travel.

They usually have someone who handles second opinions and coordinates them. Just call and ask - my little penguin gave you good advice above. They really do a lot of second opinions and are used to coordinating.
03-21-2018, 04:21 PM   #29
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
My insurance which is a type of Medicaid in Florida will not cover. I started to call places today but got nowhere. No one could be sure whom I call, do I find a gastroenterologist and call them and then how would I know if they were experts at reading it or would put in the time? Should I try a teaching hospital. it takes 5 hours to read so I assume that would be very expensive and I can barely pay for gas to orlando for her visits but I know someone that is competent needs to review now.
03-21-2018, 04:44 PM   #30
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
She has not had an endoscope or colonoscopy since she was first diagnosed two years ago, the Capsule Endoscopy was the only recent test.
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