should i get 2nd opinion?

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mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 8/2/2010 6:48 PM (GMT -7)   
had surgery in Jan.  tried cimzia for 14 months then remicade for 2 of the three starter dosages.  In my 14 yrs of the disease I never had the "D" and never had weight loss problems.  Now since surgery, the GU tried 6mp- i lost 15 lbs in 3 weeks.  just could not tolorate it.  Now he wants to try remicade again.  I have the "D" about every other week for 2 days.  I have 5 to 6 bms a day and before surgery was a once a day guy.  I have lost more weight and weight less than i did after surgery.  during my prep work i learned i have "gut malrotation" which is no common.  basically, my small intestines are all on the right side and the large are all on the left.  90% of this condition is found at infancey and emergency surgery is performed.
 
I have been with this GI for the entire time.  I see now that he has given me 13 great years.  but now i am in a bad way. 
 
Should i get a second opinion on course of treatment and on the malrotation?  I like this GI a lot and he always makes sure he or his nurse follows up with me.  But i thought i would feel so much better after the resection surgery.  there are days I feel worse!!! 
 
Thoughts????  thanks so much
48 yrs old male married 2 teenage boys. 
  • Dianosed with CD 14 yrs ago-probably had it for a lot longer 
  • tried Asacol, Pentasa, Cimzia, Remicade, Predisone
  • Had blockage in 2009-hospitalized for 6 days. 
  • Had surgery in Jan, 2010 to remove terminal illium-13 inches total of small and large. found 3 strictures.
  • Tried 6MP after surgery lost more weight. 
  • Crohn's is back already
  • Now restarting Remicade.

Are we having fun yet?


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/2/2010 7:59 PM (GMT -7)   
The question really is do you trust your GI or not? If you do trust them, I would consider trying Remicade again, and going from there. Did you express concern about going back on Remi? Have they done any tests since surgery? Do they know if your crohn's is active, or you're just symptomatic now? I ask all of that because even when my colonoscopy is clean, and biopsies come back with no active disease, I still have symptoms. Depending on my stress level and what I eat, I have cramping and D. I've come to expect that I'll have symptoms even when meds are working and keeping the disease activity at bay. I just try to judge how I'm feeling and eat accordingly.

Since you're losing weight so quickly, has your dr thought about trying prednisone to see if it helps?

Also, given that you had surgery, it is possible for this to be your new "normal" Things changed for me after my 2nd surgery. I initally had surgery and was diagnose, and for the longest time, I had 1 BM a day. Since the 2nd surgery, things go either way for me. I have periods where I have C, then D, periods where I'll have D for days on end, and any number of combinations of C and D. I usually don't have that 1 morning BM like I used to...I miss those days!

I hope you find some relief soon, and they figure out what helps you!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 8/3/2010 2:09 AM (GMT -7)   
thanks becky. yes, had another colonscopy had crohn;s is already back. he said mild be definately back just above the resection surgery.
48 yrs old male married 2 teenage boys. 
  • Dianosed with CD 14 yrs ago-probably had it for a lot longer 
  • tried Asacol, Pentasa, Cimzia, Remicade, Predisone
  • Had blockage in 2009-hospitalized for 6 days. 
  • Had surgery in Jan, 2010 to remove terminal illium-13 inches total of small and large. found 3 strictures.
  • Tried 6MP after surgery lost more weight. 
  • Crohn's is back already
  • Now restarting Remicade.

Are we having fun yet?


misspriss82
Regular Member


Date Joined Mar 2008
Total Posts : 221
   Posted 8/3/2010 6:30 AM (GMT -7)   
It never hurts to seek a second opinion. Your dr. should want the best care for you and two heads are better than one! I sought out a second opinion after my first GI dr. just kept putting me on prednisone and even though I thought it would hurt his feelings, almost a year later, I'm glad I did b/c I got better options.

The second dr. might tell you the same thing, but at least you'll know! Get a fresh perspective from a new doctor and let your other dr. know that you just wanted to double check with someone else, as a dr. he/she should realize that your health is the most important thing here and that all opinions are welcome!

Good luck!!! And welcome to the world of "D". I have it everyday, 4+ times a day, never gone away.
28y/o F, diagnosed with Crohn's Disease at 25 y/o , 2000 units of Vitamin D , 1500 Units of Calcium
60mg of 6-MP once daily since Feb. 2010
 
 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/3/2010 6:46 AM (GMT -7)   
I think if you have a good relationship with this GI you should stick with them. The good ones are sometimes really hard to find. I found after my resections I had more d than before. I started taking probiotics and they really helped to get me more regular and with less d. Are you taking probiotics? All of us should be on them especially in my opinion those who have had resections. I know since my 2 resections that I tend to get bacterial overgrowth alot more and the probiotics help alot there. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 8/5/2010 6:01 AM (GMT -7)   
Sorry, but if you had surgery in Jan. and crohns is back I'm of the opinion they quite possibly didn't get it all the first time. I would run not walk for a second opinion at a teaching hospital. Your GI sounds like a good one and based on that assumption he should have NO problem working with a doc from a teaching hospital to get this under control.
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