Surgery Question! Help please?!

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jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 11/13/2007 7:18 PM (GMT -7)   
eyes  So my doc is starting me on azathioprine today. My last CT scan a week and a half ago showed a reduction in inflammation which can't be attributed to the prednisone I'm on now because I wasn't on it at the time of the scan. My GI is confused as to why I'm having so much pain still, since the inflammation is down. I don't have any noticeable stricturing/abcesses/fistulas but my pain comes in waves and is debilitating. I've had to drop my classes for the semester and cannot currently work. I don't do much of anything but lay on the couch in pain. It's awful.
 
My doc wants to perform another colonoscopy to see if there's something going on that has been missed that could be causing my pain. I have 8 inches of my lower small intestine/upper colon affected by the disease. My doc wants to send me to a surgeon if he finds there's still a lot of ulceration/inflammation when he gets in there with the scope.
 My question is would a surgeon remove the diseased part of my intestines even if I don't have stricturing/fistulas? Obviously the affected part of my intestines is causing the pain, I'm just wondering if the other probs aren't present (strictures, etc.) would they still remove the diseased part? Any feedback would be REALLY appreciated. I'm having the colonoscopy repeated in the next two weeks.


26 year old female  diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs; diagnosed with anemia Aug. 2007. Currently taking Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet/Ultram for pain; Protonix 40mg---was on Flagyl/Cipro for two weeks,(a few weeks ago), was supposed to be on it for three weeks but the cramping and diarrhea it caused made me stop
Now on Prednisone 40mg, stopped Entocort while on pred.
Ferrous Sulfate 325mg/daily for anemia


MDdave
Regular Member


Date Joined Nov 2007
Total Posts : 74
   Posted 11/13/2007 7:34 PM (GMT -7)   
My question is would a surgeon remove the diseased part of my intestines even if I don't have stricturing/fistulas?
 
Yes they would remove the diseased part and then some above and below the area, it might be 6 more feet in eather direction, if I remember my first resection was 17feet.

jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 11/13/2007 7:48 PM (GMT -7)   
MDdave said...
My question is would a surgeon remove the diseased part of my intestines even if I don't have stricturing/fistulas?
 
Yes they would remove the diseased part and then some above and below the area, it might be 6 more feet in eather direction, if I remember my first resection was 17feet.
Did you mean 6 more inches???? Or feet?
26 year old female  diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs; diagnosed with anemia Aug. 2007. Currently taking Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet/Ultram for pain; Protonix 40mg---was on Flagyl/Cipro for two weeks,(a few weeks ago), was supposed to be on it for three weeks but the cramping and diarrhea it caused made me stop
Now on Prednisone 40mg, stopped Entocort while on pred.
Ferrous Sulfate 325mg/daily for anemia


MDdave
Regular Member


Date Joined Nov 2007
Total Posts : 74
   Posted 11/13/2007 7:55 PM (GMT -7)   
feet, you have lots of intestine

jenngrl81
Regular Member


Date Joined Oct 2007
Total Posts : 208
   Posted 11/13/2007 7:59 PM (GMT -7)   
Why would they remove so much in either direction for only 8 inches!? Several feet seems SO extreme!
26 year old female; diagnosed with severe Crohn's in Sept. 2007-suspected that I've had it for at least 3 yrs; diagnosed with anemia Aug. 2007.
Pentasa 500mg/8x daily; Entocort 3mg/3x daily; Percocet/Ultram for pain; Protonix 40mg---was on Flagyl/Cipro for two weeks,(a few weeks ago), was supposed to be on it for three weeks but the cramping and diarrhea it caused made me stop
Prednisone 30mg and tapering, back on the Entocort...
Ferrous Sulfate 325mg/daily for anemia
Bentyl, 3x/day
Azathioprine 3x/day


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 11/13/2007 8:00 PM (GMT -7)   
*passes out after reading MDdave's reply*

!!!!!!

holy mah goodness that is A LOT. seeing they are looking at also taking 8 inches of my small intestintes as well.

good luck at your next scope jenny!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 15mg prednisone (getting there!), 4000mg pentasa daily & vicodin for pain


MDdave
Regular Member


Date Joined Nov 2007
Total Posts : 74
   Posted 11/13/2007 8:12 PM (GMT -7)   
don't mean to scare ya but the docs don't play cut as close as you can they will remove way more then the 8 inches that is diseased.
They do this to make sure they have gotten all the area but in most cases like me and my mom it returns.
Surgery works for a small group of us and is no way a cure, it should be done in extreme cases were the intestine is narrowed to the size of pencil lead and scar tissue from flare ups that restrain the intestine and cause it not to stretch.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 11/13/2007 8:38 PM (GMT -7)   
There are obviously different standards of practice associated with the decision surrounding how much bowel to take. It has been my experience that only the most severely disease segments are removed. The GI surgeons I know do bowel sparing surgery because it is now understood that the crohn's will almost certainly return at the site of the anastomosis. The thinking is to take as little as necessary. The thinking is also to use surgery as a last resort.

I see that you are just recently diagnosed and are still only on the first line medications. In the abscence of strictures or fistulas, I would expect to see a step up to immunosuprressants and maybe even biologics rather than surgery right away, especially given your young age.
Belleenstein:

30+ years living with Crohn's.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/13/2007 8:41 PM (GMT -7)   
Jenny, both of my resections were done because of ulceration and inflammation. Both times they removed 10 to 11 inches of
ileum and a couple of inches of colon. We do have between 18 to 22 feet of total small intestine, but that's divided into 3 segments
ileum, jejunum and the duodenum, the ileum makes up the largest part, but the surgeons are careful to preserve as much of the ileum,
as possible, as this is where absorption takes place. So hopefully, if you do have to have surgery, they will take only what is necessary,
giving you a good chance of a long remission.

good luck
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


MDdave
Regular Member


Date Joined Nov 2007
Total Posts : 74
   Posted 11/13/2007 8:45 PM (GMT -7)   
The GI surgeons I know do bowel sparing surgery because it is now understood that the crohn's will almost certainly return
 
 
I would defer to you as my resections were in 1986 and 1990 and bag in 97.
Mom's was 1973 and 1977.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/13/2007 8:58 PM (GMT -7)   
My last surgery, 4 months ago, I talked to my surgeon about this issue exactly. He said the way to go now is to only take the bowel that shows disease. Studies show that reoccurrence is the same whether you take more or not, so in the interest of preserving your bowels, they only take what is absolutely necessary.
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


caras
Regular Member


Date Joined Apr 2006
Total Posts : 59
   Posted 11/13/2007 10:51 PM (GMT -7)   
when i had my ressection there was about an 8inch stricture and they ended up taking out about a foot in total. pretty much most of the illium and a little bit of the colon and appendix with it.
that was may 2006 and when i had a colonoscopy in feb of 2007 there wasnt any reocurrence of the disease in the area.
fingers crossed i'll be lucky with my intestines, since my rectum is such a disaster, the fistuals and abscesses are enough to deal with!
but the intense stomach cramping hasnt returned.
i decided to have the surgery and go into it as strong as possible rather than end up in an emergency situation, so if they suggest surgery i would seriously consider it if you've tried everything else.
what happened with me is the mild intestinal inflamation that i had, because scar tissue when i went on remicade and it healed up almost too well.
i know what its like to try to be a student and work with this disease. i was in the middle of my degree when i first got sick. then had my ressection the day after my last exam of my last year of school, then did nothing for about 7 months, except rest and restorative yoga.
good luck and keep us posted.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/14/2007 7:58 AM (GMT -7)   
Jenny, Mdave is an extreme. I have had two resections. They removed 12 inches the first one and only 5 inches the second. Most doctors do try to remove as little as possible.
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.


frank j
Regular Member


Date Joined Jun 2006
Total Posts : 341
   Posted 11/14/2007 3:32 PM (GMT -7)   
i had ulcers in my ascending colon, transverse colon and severely strictured terminal ileum. they removed about 6 inches at my ti using the "as little as possible" method and said they would do strictureplasty if they found any narrowed areas that weren't beyond repair that they could save and leave in. the surgical process has indeed changed, and relatively recently, as i understand it, to be less aggressive.
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