dr. read my journal

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Regular Member

Date Joined Sep 2008
Total Posts : 91
   Posted 11/7/2008 3:20 PM (GMT -7)   
I had my appointment today and like I had planned I took my journal to him on Wed.  When I went in today he thanked me for the insight and truly spent 45 minutes listening and planning our attack on my symptoms.  He is worried that I have a fistula from my small intestines to the colon, so next Wed. I have an appt. for small bowel series.  He also ordered regular abdominal series x-rays to see if bowel was getting blocked, and 30 minutes later he was calling to tell me I'm near having an obstruction.  I couldn't believe it with as many times as I go to the bathroom d daily.  How inthe world could I be getting obstructed from stool?  He explained that my d may be coming from a fistula from small bowel and motility wise I'm having trouble.  I was just in the hospital 4 weeks ago with intestinal paralysis, so it looks like I'm facing something new with the crohn's.  I've also developed motility issues with my stomach in that I will throw up yesterdays food without it digesting.  He called that gastropeurisis(sp).  He really seemed to listen today and take seriously everything I said.  I think the journal helped him see the agony I was going through.  I have to do a flush of my system just like a prep for colonoscopy to get the stool out hopefully, and not end up in hospital with blockage.  I've never had a fistula before and this kinda scares me, what do they do for those?  I'm already on Cimzia and I thought that was supposed to help those.  Anyone got any advice?  
Thanks and love to all,
diagnosed CD '03 after suffering for 10 yrs.
re-section surgery '05, Chronic Pancreas problems, joint and muscle issues (from Remicade)
meds been on-Asacol, Pentasa, Lialda, Remicade, Humira, 6-MP, Methotrexate, Rowasa, Prednisone, to many pain meds to list
Currently on-Cimzia, Cymbalta, and Klonopin(RLS)

Veteran Member

Date Joined Mar 2006
Total Posts : 1354
   Posted 11/7/2008 3:32 PM (GMT -7)   
Sorry to hear about the fistula and blockage, I have no advice to offer. just wanted to wish you well and am glad that your journal has helped you. Good luck and keep us posted.

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 11/7/2008 3:41 PM (GMT -7)   
Talk to your doctor and point him to this article: Link: http://www3.interscience.wiley.com/cgi-bin/fulltext/120708799/HTMLSTART - or print it and take it to him.
Ask him if it would be worth trying in addition to your current treatment. It is quite harmless, but he would have to confirm that it does not interfere with you current meds.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 11/7/2008 3:48 PM (GMT -7)   
Hi Kimmy See your journal got your message across. I have dealt with the sort of fistula you are talking about and the SBFT should help locate it. What I did to get help .Rem. and Imuran to get to the point I guess I ended up getting a resection. Two places cut and a few stitches in one place.

As far as moltitly goes if you are getting blocked that would explain some of that, I am pleased to hear your Dr. is getting on top of things and not just letting things get worse. Keep us updated. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail

Regular Member

Date Joined Mar 2006
Total Posts : 310
   Posted 11/7/2008 6:05 PM (GMT -7)   
Hey Kimmy, I haven't had a fistula, but I am so glad that your doctor learned from your journal. It sounds like you did a great job of documenting your situation so he can help you get on track. I hope that your testing goes well and that you have relief of your symptoms soon so that there will be improvement.

Take care,

Betsy (-:
Dx Crohn's Disease 1996
Have taken Prednisone, Pentasa, Rowasa, and Asacol
Currently on Asacol 2400 mg daily to manage remission

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 11/8/2008 4:20 PM (GMT -7)   
No advice, Kimmy, but I did want to say wow! I'm amazed, impressed and thrilled that your doctor cared enough to read the diary and actually address your concerns. I'm really happy for you.

Here's to brighter days ahead,

Co-Moderator Crohn's Forum.

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