managing second opinions

Hi Gang,
I'm just needing some support and advice. I had re-section surgery in May following a second opinion at U of Chicago hospital. At that time, I scheduled a follow up visit in Chicago in October, figuring I would have it on the books and I could cancel it if I was doing well. I live in Michigan but I am going to Chicago for my nephew's wedding so I will be in town visiting with relatives the week that I have the appointment.

My local GI is a super nice guy, but Crohn's is not his specialty. I have been doing ok, but I have bad gas and several times a week I get "poop-a-thon" episodes. So it's not really diarrhea, but I'm not doing great. There are still a lot of days where I skip meals because I don't feel well. I'm still able to go to work and function. So this all may be normal after a re-section...I don't really know. My local doc has been trying Flagyl for one week a month, and I don't really think it's making any significant difference. Furthermore, I can't seem to get my GI to order a fecal calprotectin test.

So I'm thinking of just keeping the appointment in Chicago just to see if Dr. Rubin has any extra ideas about management. But I feel like I might be insulting my local doc. I know it's my body, but I'm struggling to get past the anxiety of telling my local doc that I want to see Dr. Rubin again. I don't have a follow up appointment with my local doc until after the Dr. Rubin appt is scheduled. For those of you who have gotten second opinions, have you seen the specialist more than once? How did you manage that? Any advice is welcome!!

gumby...I have not gone through the 2nd opinion issue, but I do think you should keep your appointment.  From past posts, it seemed your local doc was not offended at all by having a more specialized doc involved.  I don't have the impression you would be doing any damage to your relationship.

I also think that you should send a note to the Chicago doc in advance with the tests and/or meds you think should be considered so you can maximize your time out there.

As for post resect feelings...mine was so long ago and emergent due to rupture that my experience may not apply...but I can say it took me at least a year to fully adapt.  Of course I was new to the whole dx at that point too.  But, I think you need to relearn your bodies rhythms and also know that you are not "perfect" just because they cut out a section.  I look at your experience as a test ground for what may be coming my way.  My expectation is to have to relearn diet and getting the "poop on schedule" for at least 6 months post any future resects (especially since I am older than the last time and not in as good a shape).  You know...relearn how to keep all the plates spinning!

Go talk to the Chicago doc if for nothing else than peace of mind...I think it is worth it.

gumby--I'm in a holding pattern for my CD right now.  As of last visit, GI was OK with the wait and see as long as I stay without daily pain and don't end up in ER.  He is also considering occasional antibiotics (at my pleading).  I was supposed to set up a follow-up, but other things have gotten in the way of accomplishing much in my life.  I will call though...I am starting to see the tell-tale signs of needing a round of antibiotics again (itching, unique odor, general malaise, appetite low).  I see you are trying flagyl one week a month....I am going to ask if I can get on a regular schedule of this minimal antibiotic rather than playing teeter-totter.  I have been relatively pain free compared to the last two years...some gut pain with this wicked cold, but not knock me down pain like I was having at Easter and before.  Just trying to keep sunshine in my head right now and making myself appreciate the good things I have.

Hi Gumby....Yep it take a while to feel better, and my system was all out of whack. The crohn's had come back as well so I was fighting a lot after my resection. Now, I ended up not only getting a second opinion, I left my original GI-even after going through the surgery with him. And his group is the group in town which does all the tests for new drugs, and are considered experts. However, i was not happy with how he dealt with me. so i found someone i really trust and like. plus the wife likes him. I told the GI why I was leaving and he was upset, but in the end he told me I was the one who had to be happy and i could call him anytime. so, dont worry about what the other one thinks, you are in control of your body and no one else!

Drinking MOVI-Prep as i write this. time for colonoscopy number 14 tomorrow....hopefully we can answer what med to take next.