surgery question

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Cookie's Wife
Regular Member


Date Joined Aug 2005
Total Posts : 299
   Posted 9/21/2008 7:49 AM (GMT -7)   
How do you know when it's time for surgery?  I'm on Humira and Asacol right now but I seem to have many more bad days then good.  I've also tried Remicade and Cimzia with no luck.  I've had Crohn's for 9 years and never have had surgery.  When is it the right time to discuss surgery when medications just aren't working?  Any advice/comments would be helpful! Thanks!
~april
 

 



gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/21/2008 9:20 AM (GMT -7)   
Hi When things are narrowed and meds aren't working is probably the time to think about it. BM's just don't get threw a too small space very good. For me the GI said it was time I was getting pretty sick and the stools were not getting out he told me the meds weren't working. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/21/2008 9:39 AM (GMT -7)   
My first criteria would be just how much Crohn's activity where. If your Crohn's is confined to one or two small areas and your quality of life sucks early surgery may well be a good option and wise choice.

IF on the other hand there are multiple areas of disease activity skipped thru out a good share of the intestines .... and quality of life sucks I'd wouldn't be as quick to agree to surgery. I'd have to know a whole lot more about my disease activity, sites of activity, narrowing and stricturing and whether disease activity at the sites of narrowing and stricturing or whether they were due to scar tissue. Whilst the doctors can't guarantee what they feel they are seeing via the various tests they can get a pretty darn good idea if they've run the gamut of pertinent tests. And I would be wanting them to go over the films w/me and point out the areas involved, every one of them. And have to be satisfied we had done all the tests that could best identify the problems.
 
I know, altho my quality of life was pretty darn good, I would have AGREED to a second resection 9 years ago IF the surgeon would have been willing to concede to leave one area alone that was somewhat narrowed but displaying NO SIGNS of active disease. And that is what we are disagreeing about now. We both agree on the one area at the old anastomosis site, we don't agree on another area below that partial obstruction. When I return to Mayo in October and if we still don't agree - there still will be no surgery done. My quality of life does not warrant surgery yet.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 9/21/2008 10:44:18 AM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/21/2008 9:47 AM (GMT -7)   
I think C2 made a very valid point and it is one I always consider. What is the quality of my life? A question you have to answer yourself.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 9/21/2008 10:36 AM (GMT -7)   
Thanks again everyone. Although I have only been dealing with Crohn's as such for a year, it amazes me when you are pondering a certain situation, there appears some answers.
Next colonoscopy, hopefully they will get to take a look at everything before making the decision as to whether or not to have surgery. And comments about quality of life will be considered as well as I feel pretty darn good and is why I haven't done anything as far as meds or surgery yet.
 
Good luck lirpamh!
55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for the last 11 months. Starting methotrexate in mid-September.


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 9/21/2008 4:12 PM (GMT -7)   
I only had a resection because I couldn't work anymore with all the steroids I was on at the time and the obstructions were putting me in the hospital and messing with my family responsibilites. Two years later and I am flaring with lots of D at the moment, but only small obstructions that I can deal with at home. Surgery is not always the answer though, I was stupid and thought that if I had the surgery my Crohn's would be gone for a long period of time. I was wrong, but at I'm not on steriods very often.

Good Luck!!
dx'd with Crohns 1984, I was in  remission for 12 years
Bowel Resection surgery 2006


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/22/2008 1:49 AM (GMT -7)   
Bammer, you are missing the point. Is your Crohn's in your colon? Or in your colon and small intestine? Or just in your small intestine? Or just the ONE area at the terminal ileum/ileocecal valve/cecum area? If there is no colon involvement except at the TI/ICV/cecum area that the scope can reach do you KNOW if there is active disease elsewhere in the small intestine as well? A scope isn't gonna tell you that!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/22/2008 1:51 AM (GMT -7)   
Lirpamh, if you are getting no relief from meds and your quality of life sucks - its time.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 9/22/2008 8:07 AM (GMT -7)   

CrohineToo,

Last July I had colonoscopy, SBFT, gastroscopy and CTScan. Two more colonoscopies since and colorectal surgeon did sigmoidoscopy in June 08 and found  the same, 2 inches of stricture in sigmoid colon which is inflamed and no evident disease on either side of the stricture. Yes I would like to know what is going on everywhere and one reason why agreed to the methotrexate. Previous tests showed one other area of ulceration. Does that make sense?


55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for the last 11 months. Starting methotrexate in mid-September.


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 9/22/2008 8:12 AM (GMT -7)   
PS: First methotrexate injection today.

55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for the last 11 months. Starting methotrexate in mid-September.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/22/2008 9:01 AM (GMT -7)   
Yup, as long as it is "just" in your colon. If I had small intestine involvement as well "just" another scope wouldn't be satisfactory to me. I'd insist on knowing as best we could, what was going on in the small intestine beyond the scope's reach as well. And that is in regard to surgery, not about our choices of meds.
 
GOOD LUCK!!! I hope the methotrexate works wonderfully well for you!!!!!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

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