Confused and unsure

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bad-bell
New Member


Date Joined Sep 2007
Total Posts : 16
   Posted 9/20/2007 7:19 AM (GMT -7)   
Went in for my first colonoscopy after finally going to the DR for bleeding and what was thought to be a case of hemmoroids. When I left, I was handed a sheet of paper that said the findings were Chron's colitis and a little write-up about it.  Today, I'm sitting here waiting for a call from the DR to get the pathology report back (2wks since the colonoscopy) and don't have a follow up Dr visit scheduled for another 2 weeks.  So, I'm nervous and confused. I had never heard of Chron's before going in for the colonoscopy and thought that I just had  bad constipation and lactose intolerance for the past 15 years.  Is it normal for one to just get a preliminary DX with no explanation?   I guess all that I've read is making me scared and now I just have to sit and wait with no info.  Any advice to calm my nerves?

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/20/2007 7:42 AM (GMT -7)   
I am so sorry and welcome. no, the doctor shouldn't do that. I thought my first GI was bad enough for only telling me I had a disease and to take my meds and come back in a month. I now have a GI who talks to my for a long time. anyway, my best advice is ask questions here at HW; you will find wonderful people. however, many here are quite ill, so don't fear the worst. lots of folks get on the right meds and feel great. it might take time to get meds figured out so try to be patient. let us know what happens next! 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. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and preparing to begin Humira.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/20/2007 8:34 AM (GMT -7)   
Welcome to HealingWell, Deeno.

As for normal, these days who can say. Actually though that was a bit insensitive of this doc, to lay a pretty serious dx & then leave without explaining it to you. Obviously, this doc/clinic is too busy to properly care for you. Find another!
That said, your feelings are perfectly normal at this time. we have ALL been there, you will find lots of sympathy & support here!
Before my initial dx, I heard the word Crohn's just once & never connected it with me. When I got worse, I thought I had UC, as did my first GI.

Sincerely,
Matthew

Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 9/20/2007 8:40 AM (GMT -7)   
My doctor called me with the diagnosis and made a follow up appointment that week to discuss our plan of action and go over everything. You can always change doctors when you are ready as well.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Entocort, Prograf and Remicade.


bad-bell
New Member


Date Joined Sep 2007
Total Posts : 16
   Posted 9/20/2007 8:43 AM (GMT -7)   
Thanks for the warm welcome. I'm glad I found this site and forum. It gives me some feeling of doing someting while I sit and wait.

Good point about finding a doc/clinic. I've been trying to find resources on how to know if this GI is good and what kind of questions I should be prepared to ask about any DX and his experience when I go in for my appt. in 2 weeks. Any advice on that would be great.

Thanks for being patient with a newbie who's feeling a bit helpless.

jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1131
   Posted 9/20/2007 9:12 AM (GMT -7)   
My very best advice is to contact the Crohn's & Colitis Foundation of America (if your in the States). there are others in several other countries. www.ccfa.org

CCFA also has a new Information Resource Center (IRC) 1.888.my.gut.pain. They are staff there to answer all of your questions, send you some education materials and help to find you a support group in your area.

Also, you can check CCFA's website for Physician Members. esentially, they are not recommening these physicians, but by beconing members, they most likely have taken a special interest in Crohn's and colitis. Not all GI docs specialize in these digestive diseases.

Welcome and I hope you receive the information you deserve!

 .jb
 
Support me in the CCFA Team Challenge!

yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/20/2007 9:15 AM (GMT -7)   
I found books at the library and read all I could in print and on-line. I had never heard of crohns and luckily found HW that very day. when you go to the doc, take a list of questions and if you are nervous, take someone with you to help. follow your gut and if you don't feel taken care of, think about switching. specialists are so different from primary docs, but this is a big deal, so you should have your questions answered. you might even call ahead and make sure the appt is for enough time after a new dx.
again, just remember that most of us have initial confusion with meds and tests. so don't expect to be fine overnight. they might send you for more tests.
it is ok to feel helpless; this is a big deal and we all know that!
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. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and preparing to begin Humira.


bad-bell
New Member


Date Joined Sep 2007
Total Posts : 16
   Posted 9/21/2007 12:21 PM (GMT -7)   
Again, thanks for the advice. You all helped me feel that I have the right to ask for good care.

I got a phone call yesterday from the GI who gave me a 5min explanation of my results (which I didn't fully grasp b/c I had to duck out of work to talk) and then said he would send over a prescription (Ascola?) to the pharmacy for me to take. I picked it up and then decided that I really am not ready to start taking meds before I actually have a sit down face to face conversation with this GI that I've only met once... as I going to have colonoscopy. My appt with him isn't for another 2 weeks, so I left a msg for his nurse to call me b/c I'm feeling really uncomfortable with how I've been given this Dx and treatment. I've never talked with him or my primary care physician about what I've been experiencing for the past 10+ years.

So, thanks for helping me take a little control when I'm feeling really out of control!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/21/2007 1:08 PM (GMT -7)   
Hi Deeno If you have questions about your meds the pharmacy can answer alot about them. I am sure that people did not mean for you to go against what your GI ordered. Just wanted to add my welcome and tell you the people here are very caring and helpful. Sounds like you have had problems for awhile so it is good you finally have a DX. Any questions you have feel free to ask there are others here that take asacol although I did not find it helped me.lol gail
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