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My son has a complicated case of Crohns-am taking recommendations for California Surgeons.

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Crohn's Disease
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Posted 11/20/2013 12:01 AM (GMT 0)
Hello, I'm in desperate need of any suggestions for a surgeon in California. We are in Nevada, my local doc said he would not let the surgeons here do surgery on his toe. Went to UCLA and insurance denied the surgery, but said we could fight it. But having trouble getting a hold of the surgeon at the moment. Can anyone recommend a good surgeon in California? Also, is it worth it to fight for Dr. Sacks?

Thanks so much in advance. I'm quite desperate as my son has a stage four and two fistulas.
Maiysa smilewinkgrin
Posted 11/20/2013 1:36 AM (GMT 0)

Maiysa,

I'm not sure if it's just me, but I think you need more detail to your post. Your son has Crohn's, and is in need of surgery on his toe?

Also not sure what you mean by stage four, and the two fistulas?

Tom.

Posted 11/20/2013 2:44 AM (GMT 0)
Oh so sorry. We were told our son has stage four Crohn's. Not sure what that means and maybe this is a term used by the first gastro we had. Anyhow, it is the worst type and has to have bowel reconstruction along with possibly having to fix the ileum. We don't really know exactly what has to be done surgically because unfortunately the gastro has yet to have contact with the surgeon about our sons case. So a flight to LA was basically a waste of time. Anyhow, he has two fistulas. I don't know what else there is to say about the fistulas, except that one has attached to his bowel, thankfully, and the other they are not sure where it has attached itself too. The CT scan does not show it and of course the colonoscopy didn't either.

Also, the comment about the toe, was that his doctor said he would not let the local surgeon do surgery on his toe…meaning he wouldn't let the surgeon do surgery on his own toe let alone his colon.
Maiysa
Posted 11/20/2013 11:07 AM (GMT 0)

Ah, now I understand more clearly what's going on. The only confusing part now is, the use of the term "stage four" Crohn's.

I've never heard of that descriptive before. Could you give some more detail about your son? How long has he had Crohn's? How old is he? Has he been on any prescribed medications?

surgery can be a vialble option, but the medication route should be thoroughly explored first. Even a cycle of prednisone, followed by an anti-TNF drug, may bring the condition of his bowel back to a normal state. Particularly if its mostly inflammation he's dealing with.

You'll get many more replies here with good advice. The one piece of advice I'll give you is, be firm with your Dr's. If you don't feel confident with who you're seeing, then go to someone else. YOu might get recommendations for GI's and surgeons in your area via websites like HW or others.

Good luck, and keep us posted.

Tom.

Posted 11/20/2013 3:43 PM (GMT 0)
Hi,
Sorry to hear about your son. I too have never heard the term "stage 4" used for anything but cancer, but it may be just me. Maybe a second opinion from another GI would be in order with possibly a referral to a surgeon from that doctor?
Posted 11/20/2013 4:49 PM (GMT 0)
Thanks for you replies. My doctor told me there are 5 stages or levels to crohn's. All I know is that 4 is where fistulas have developed and five is where there is both this stage and colitis.

My son is in his early 20's, has had Crohn's since he was probably 14, but took 7 years for a diagnosis, and has been on remicade and had a reaction so has been on Humira for 2 years and it's obviously not working. So sad.

So just needed to know if anyone knows of any good surgeons in the California area, preferably Southern. This is our third opinion…just wanted to know if anyone knows of a good surgeon. :)

Thank you.
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