Initial visit to GI doctor...what questions to ask?

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softballfan
Regular Member


Date Joined Mar 2008
Total Posts : 36
   Posted 3/26/2008 7:18 PM (GMT -7)   
My son has an appt with the GI doctor tomorrow, Crohns is suspected.  What should we expect in the first visit and what questions should I ask? 

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 3/26/2008 8:25 PM (GMT -7)   
how old is your son? there are parents who could be more help than me. I would say ask what tests he/she plans to order, what meds, do they recommend a bottom up or top down approach and why. I would note any symptoms your son has and what he needs to feel more comfortable. take notes and don't leave until you feel satisfied your questions are answered.
let us know how it goes. yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/27/2008 5:51 AM (GMT -7)   
Totally agree with YP you have to stay until all your questions are answered and til the GI knows you will be FULLY involved in all your sons medical tx.......and log all his Symptoms

Questions about nutrition.......flares ect ......may help as well I KNOW many will give input so I will not overwhelm you

Tx options .......as well as planning for times when he is in pain who is the RX doc ....for the pain meds??.....there are so many questions
Is this doc from old way of approaching CD or new way .......something IMHO you should find out As I said many that have lived with this DD will answer I am sure.......

I wish you all the best
God Bless
Stay with us and keep us posted
 
LYN


  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
 
   
 
                   
 


EMom
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Date Joined Aug 2007
Total Posts : 990
   Posted 3/27/2008 6:39 AM (GMT -7)   
I think I read in another post your son is 16? My son will be 16 next week. I am not a font of information, as he was diagnosed only last June. That said, I want to tell you from talking with parents on both coasts of the US and parents here in the mid-west that there seem to be vast differences in children's disease management from doctor to doctor, place to place. (And of course, every person's disease warrants individualization of treatment, so this is understandable.) For example, our GI doc is a CD specialist at Children's Hospital in St. Louis. He puts little to no stock in many of the blood tests/markers (like Serology 7, sed. rate, CRP, etc.) people discuss on this board. He says it is all about the colonoscopy biopsy and symptoms. Symptoms symptoms symptoms. This is very different from what I've learned talking to moms in other parts of the country.

Some pediatric doctors will not consider using prednisone to stop a flare under any circumstances. Our doctor chose to use it. I know it is very effective--and it did stop my son's flare. After he was off the pred. I spoke with a mom in CT who told me her son's doctor would not use pred., and instead utilized a semi-elemental (all liquid) diet to stop her son's flare. This is considered a viable option (albeit, very difficult). We were not given this option. I am not necessarily being critical here, just attempting to demonstrate the differences in approach to management.

Another thing about our doctor; he is not very open to managing the disease with diet and/or supplements. He's having to put up with me, though, and that is what we are attempting to do. Thankfully, it seems my son has a mild case of CD and it *seems* what we are doing currently is working. I say "seems" because I understand this disease can be insidious. Things can be going on in there of which we are unaware.

Our doctor is a great guy who has given us lots of his time and patiently answers all of our questions. I usually go in with a list of questions so I don't forget anything. I also keep a folder with copies of test results and notes to myself.

Is your son flaring at the moment?

I hope this helps a tiny bit! Feel free to email me personally if you'd like to talk further. :-)
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.


softballfan
Regular Member


Date Joined Mar 2008
Total Posts : 36
   Posted 3/27/2008 5:45 PM (GMT -7)   
Emom and others,
thanks for the information. Our appt went well, I liked the doctor. Her view on the Serology 7 is that it is helpful info for the already diagnosed person of IBD. She relies on the colonoscopy, upper GI series and the EDG...all of which she is reccommending for my son, 16 year old. We go for the upper GI on Tuesday.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/27/2008 6:02 PM (GMT -7)   
I just wanted to welcome you and wish your son well next week for his test. All the tests we Cders get to have are soooo much fun, not. My heart goes out to your son, I was 13 when I started having symptoms even though I wasn't Dx until I was 23, so I understand how miserable it is to be a teenager and feel so sick. I also have to say, I love your name, I'm a softball fan myself!

I'll be keeping your son and your family in my thoughts next week, I hope it all goes well.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 3/27/2008 7:55 PM (GMT -7)   
Good luck to your son next week on his tests. Sixteen is a hard age to be diagnosed with this disease. I'm sure if his tests warrant him having CD there are plenty ppl here waiting to help you through this. Does anyone else in the family have a history of Crohns?
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


softballfan
Regular Member


Date Joined Mar 2008
Total Posts : 36
   Posted 3/27/2008 8:25 PM (GMT -7)   
Nobody in the family has Crohns but my son was diagnosed with systemic juvenile rheumatoid arthritis when he was 12 years old. He takes enbrel and methotrexate right now, apparently once you have one autoimmune disease, it is not uncommon to get another.

At our appt I was trying to understand the connection between the upper GI test and the colonoscopy, I guess you can have one area affected but not the other?

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/28/2008 6:26 AM (GMT -7)   
I wish you and your son all the best on his appointment and scopes..........

LYN
  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
 
   
 
                   
 

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