Capsule Endoscopy

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amw2003

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Jun 22, 2017
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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
 
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!
 
We did not have to do a whole prep, like the colonoscopy prep. Just had to fast after midnight.

Good luck!
 
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.
 
I’ve 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.
 
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.
 
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.
 
Our gi read my kiddos capsule endoscopy
But it’s 6 hours of video that needs to be reviewed
It was done at the kiddie hospital
 
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
 
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.
 
Remicade is not staying in her system. I am not concerned about that. Concerned about the anemia and iron not helping.
 
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.
 
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?
 
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
It’s all good
 
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.
 
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
Click to expand...

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.
 
Mayo Clinic in Florida does not treat pediatric cases for gastroenterology, called them and found this out.
 
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 it’s civered
There is some weird thing that covers it’s 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
 
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.
 
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?
 
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?
 
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. )
 
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.
 
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.
 
She has not had an endoscope or colonoscopy since she was first diagnosed two years ago, the Capsule Endoscopy was the only recent test.
 
Did you talk to a second opinion coordinator??

I don't know how to get a doctor to re-read a test without a record review or seeing them in-person.

Does anyone know? I'll tag crohnsinct, Mehita, Jmrogers4, my little penguin, DanceMom, Farmwife.

If she hasn't had scopes for two years, it may not be her small bowel - it could be her colon.

Another option might be to call your insurance specifically and ask them if they cover record reviews out of state.

I do know CHOP treats a LOT of medicaid patients, including patients from different states. When my daughter was inpatient, her roommate was a little girl from Delaware who was on Medicaid.

http://www.chop.edu/centers-programs/family-health-coverage-program
http://www.chop.edu/services/financial-assistance-policy-summary

Another option would be looking at different Children's hospital in Florida and looking at their Financial Assistance programs.
 
So you call the second opinion coordinators at which ever hospital you want
They tell you what they need
It will be all her records imaging pathology slides etc...
NOT just the capsule imaging

They have an insurance coordinator who can tell you if they have a shared agreement with your states medical assistance insurance
Most do

But you need to talk directly to the second opinion coordinators


If your insurance is covered
Then they will tell you where to have your current hospital send all the records
Pathology slides and imaging

Most of the time you sign a records release form
And include images /pathology
Then you need to sign a form for imaging and pathology

They will have different addresses
Once they review the records /slides /images
They can offer you an inperson appt OR a records review

http://www.childrenshospital.org/pa...fpaBua814K1JdOyxGxSrk-dshb7Ut7UxoCCMIQAvD_BwE

https://www.cincinnatichildrens.org/service/g/gastroenterology/contact


http://www.chop.edu/centers-program...logy-hepatology-and-nutrition/second-opinions
 
I will contact all of them tomorrow. How do you know if the Gi is any good though that will read results? Thank you
 
Theses places are tops in the entire country for their GI programs
They have people come from other countries as well as across the US just to get their GI second opinions
You don’t need a capsule “expert”
You need a full second opinion review

Second thing if you have medical assistance
Call them
They can help woth transportation to and from
They could help you get to neumours
Please ask
 
Yes, I would agree with that. You need someone to take a look at everything that is going on.

And I also agree that you need to switch GIs if you can. Not doing scopes when a child is actively bleeding is crazy. And if he didn't find the cause in her small bowel, rather than ignoring it, he should be doing scopes ASAP to make sure it's not her stomach or large bowel.

The pillcam does not see everything. If the camera is pointed away, it could miss a bleeding ulcer. That is why you need someone who is proactive taking care of her - someone who cares enough that will try to figure it out.

Her current GI is not doing that.

I would DEFINITELY call your insurance and Nemours. They may be able to help you. Call the financial assistance department at Nemours and see what they can offer. I know CHOP has an assistance program for local families, Nemours may have a similar one.
 
I will never go to Nemours, they do not have good Doctors in FL, we tried that in the beginning of all this. We go to Florida Hospital for Children in Orlando but my insurance does not cover the best Doctors.
 
Look into the online second opinion from Boston Children's. It's $650, not covered by most insurances. Unfortunately medical care is not cheap.
 
And just so you know, Nemours is a fabulous hospital. Not sure why you're so resistant to going there. They are extremely flexible with payment plans, it is a family centered environment, and I offered to recommend several amazing GIs. To say "they do not have good doctors in Florida" is silly and absurd.
 
I would also give Nemours a second chance. Maybe you could see a difference doctor - not the one you saw the last time.

DanceMom has given you some good options - her kiddo is complex so I'm sure she knows who is best!!

The fact is, your child is not getting good medical care with your current GI. You have not yet called and figured out record reviews from hospitals like CHOP or Cincinnati Children's are covered by your insurance.

Boston Children's may also be covered considering you have Medicaid.

Meanwhile, your daughter is sick - she has a hemoglobin of 7 which would mean an automatic admit and blood transfusion PLUS scopes and other testing if necessary by our GI. I would guess all good GIs would do the same.

The fact that your current GI won't do a scope except once every 5 years is not only wrong, it's dangerous. Most GIs scope every 2 years. Occasionally it is less frequent if the child has been in stable remission for a long time. Once they hit 8 years past diagnosis, they scope yearly to check for colon cancer.

So what have you got to lose by taking her to Nemours once more?
 
amw2003 said:
I do not have $650 as I said can barely pay the gas from our home to hospital in Orlando.
Click to expand...

I understand the lack of money, as I live on a fixed income. Healthcare costs are rising every year, but my monthly benefits are not. I don't have $650 either. And using a Charge Card is absurd because my Bank won't lower my Interest Rate. Everyone who lives around me in my apartment complex is living on very little "income" too. I understand the frustration about money because my sister seems to have a "money tree" planted in her backyard, but apparently my "money tree" got lost in the mail. : - \
 
Yeah that
One GI does not make a hospital
Please try a different one
At our hospital
All kids even with medical assistance can see any doctor there

Ds has been dx since age 7
He is 14 now
He has had 7-8 scopes
4 MRE
2 pill cams
And 2 ct scans
Any time Ds has bad symptoms we test

Never suggested the online program woth Bch since that is NOT covered with insurance
Just a records review

Definitely call
How many docs did you see at nemours?
One
Two
Ten
?
 
Most of the major children hospitals have good ped GI departments.

I am also thinking that you should probably prepare to have the GI want to see her given her status. So another good hospital closer to you than CHOP and BCH is Children's Hospital of Atlanta (CHOA). They have great docs there and are active in research.

Most hospitals will work with you on fees and do not require the money up front. I know a mom who is paying $20 a month for her son's $2,000 colonoscopy. Don't be afraid to explain the situation to them. They have people on staff specifically hired to handle this type of thing.

:ghug: It is hard enough dealing with the worry of a chronic illness but to add financial worry on top of it is awful.
 
We had the same experience.
Her first Gi was no good for us but a life saver for another child in this forum.
We stayed simple because it was closer.
I'm glad we did because her new Gi (of 4 years) is great.
Hugs
 

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