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Crohn's Disease Forum » Surgery » Surgery? 2nd opinion?


01-12-2015, 09:59 PM   #1
k5disney
 
Join Date: Jan 2015
Location: Kalamazoo, Michigan
Surgery? 2nd opinion?

Hi Crohnys! I'm new to the forum idea but more or less desperate at this point.
I was diagnosed with Crohn's about 9 years ago at 17 years old. My original doctor probably had no idea what he was doing; had me on very high doses of Pred for about 7 years straight. I moved on to a better doctor when I was hospitalized for a month after my intestines opened up and he literally threw his hands in the air proclaiming that he "didn't know what to do" with me (haha). Skip a year or two ahead to now, and my new doctor (who I trust very much) is saying that we have no other choice than to do a small bowel resection, as at least 20cm of my small intestine is completely destroyed.
I hate the idea of surgery because the last time I was hospitalized the team of doctors told me that this particular surgery tends to not heal well, requiring more surgeries, and ultimately ending with a c bag, which is the LAST thing I want!
I am 26 now and my husband and I had hoped to start our family this year. Should I have faith in my doctor and go head with the surgery? Or should I seek out a second opinion? If so, how do I go about doing that? My doctor is the go-to in Kalamazoo. Should I drive all the way to Chicago? Any advice helps! Thanks for reading
01-12-2015, 10:44 PM   #2
nogutsnoglory
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Location: New York

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I would get a 2nd and possibly 3rd opinion. Ask if the intestines are scarred as that can't heal. If it's inflamed there is a chance and maybe biologics are worth a trial before surgery.
01-13-2015, 01:37 AM   #3
Clash
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A second opinion is always an option. Also, some questions for your GI may help you in determining where you stand.

1. Is this inflammation or scar tissue.
2.Is there an urgent risk of perforation, obstruction etc. or do I have time to seek out a second opinion? In other words, is this at the point of emergency situation?
3. What maintenance meds are you considering after surgery?

Also a records review by a large IBD center could be an option. Since he is suggesting surgery then a surgical consult to get the colorectal surgeon's opinion might help as well.

There is a doctor directory on the forum, in the tabs across the top. These may give you the names of other GIs that our members have used in your area or near you.

Otherwise, you could search out an IBD center or GI group in the Chicago area and then contact them to set up the second opinion. You will need to forward all your testing and records to them from your current GI. Explain to your current GI that before going through with something as invasive as surgery you would prefer a second opinion allay your concerns.

Good luck!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
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