Crohn's Disease Forum » Parents of Kids with IBD » Newly diagnosed son-need MD advice

09-01-2014, 12:14 PM   #1
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Join Date: Sep 2014
Newly diagnosed son-need MD advice

Hi everyone! I'm Jessica and my husband and I have three kids. I have a sister who was diagnosed with Crohn's 20 years ago (had a re-section then but is not on any daily meds and is pretty much in remission) and my husband's father has Crohn's as well (no surgeries but takes meds). Our 14 year-old son was just diagnosed with Crohn's. He went in to the hospital and had a colonoscopy/endoscopy with a pediatric GI that his pediatrician recommended. Long story short, the GI perforated his bowel!!!! He needed surgery to repair the hole and was in the hospital for a week! He just came home yesterday.

While we were in the hospital the GI called and said the biopsies were back and Crohn's is confirmed. Obviously we'll need a GI I put my anger aside and continue on with this one? He was very apologetic so part of me thinks/hopes he'll always try that much harder to help my son. He's also the only GI that has seen my son's bowels with his own eyes, not just reports and pictures. The mama bear part of me doesn't want to chance him hurting my son again! I'm so torn. Any advice/suggestions/thoughts on this would be very appreciated!
09-01-2014, 01:48 PM   #2
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Join Date: Jul 2013
Location: Ontario

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Hi and welcome.

Sorry to hear about the perforation during the scope. I know its a risk but this is the first instance I recall hearing it happening.

We have a great group of parents here. I'm sure they'll be along soon.
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DX 1978 (12 yrs old)
Ileostomy at 19

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09-01-2014, 02:47 PM   #3
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Join Date: May 2014
Your son will need colonoscopies in the future. Would you feel comfortable letting that GI do the future colonscopies? If that answer is no, I would suggest finding a new GI.

Welcome and sorry you had to find you way here.
09-01-2014, 03:27 PM   #4
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Join Date: Aug 2013
Location: Pennsylvania

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So sorry this happened to your son! I would say get a new GI. I'm sure this one was apologetic ( he doesn't want you to sue him) lol
You will need to do lots of appointments at least initially & you can't start off with a bad feeling about the doc
It would be too hard for me to push aside the momma bear in me! Ha!
mom to LJ 16 (dx 12)
Prednisone 1-30-14 to 10-14
Current meds
Folic acid
Back on Humira 8/22/14
Remicade 11/22/13-7/24/14
Humira 7/13-11/13)
09-01-2014, 06:12 PM   #5
Jmrogers4's Avatar
I agree with momtotwo, what about the next time he needs scopes? I know that things can happen and it is one of the tings they warn you could happen but when it does I imagine you would lose some faith in that doctor.

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
09-01-2014, 06:23 PM   #6
my little penguin
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Things to consider ...
How damaged was his intestine was it extremely friable ( very thin tears easily).
How much disease was there and for how long ?
We are all told the risks of a colonoscopy but no one expects it to happen.
The more badly damaged the colon the higher the risk.

I would want to read the doctors notes - from the scope - medical records would have those
Plus the pathology report.
That will give you a better idea next time about future scopes.
DS - -Crohn's -Stelara -mtx
09-01-2014, 06:29 PM   #7
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I second MLP. If his intestines are in very bad shape it does make it easier for a puncture to happen. I would probably discuss it with the doc and tell him your worries. Say you understand that it is a risk. Ask him if he has ever had this happen to another patient. Also where you live are there a lot of other doctors available or are you in a small town? All that can help make your decision. Doctors are human and mistakes can happen but it is not something that should happen on a regular basis. Also it is very good that they realized it and took care of it right away.

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
09-02-2014, 06:59 AM   #8
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Join Date: Mar 2013
Location: (Canada), Nova Scotia

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Welcome to our forum family, but so sorry to hear of the terrible time you've been through. If I were in your situation, I think I would have a chat with your child's paediatrician regarding the GI. I would think he/she would be able to either calm your reservations about this GI, or tactfully refer you on to someone else. Whichever you chose, I hope your son recovers from the surgery quickly and you get him on the road to remission. Take care!

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