I live in the Bay Area and have had Kaiser most of my life, but I don't know the surgeons in San Francisco. You can go to the doctor's home page for information, but that will not get you the information I think you are looking for (complication rates and similar).

To get a referral to another doctor within the Kaiser system I would think you just would need the referral to be sent by your attending surgeon to the surgeon in San Francisco. If you are outside of the Northern California region, you may have to go through member services, but I am not sure. I have had procedures done at other facilities than my own, because Kaiser tends to consolidate services that are not routine. The referral was made by my local specialist, and they called me for an appointment within days.

So, I don't think it should be a problem. Most of the specialists are pretty good, all doctors are required to be board certified, and many doctors choose Kaiser so they don't have to screw around with insurance forms.

So, basically, I'd go through your surgeon first, and if that is a dead end, go see someone in member services to see what the procedure is.

Oh, and one more thing: Since your diagnosis is now Crohn's, reverting to an ileostomy may not eliminate the need for the drugs you are trying to avoid. Plus, it would also mean losing some precious small bowel. If Remicade is not working well, have you considered Humira? Remicade is based on mouse protein and Humira is fully humanized, so less likely to cause reactions. In addition, it also is self administered, so you don't have to come in for infusions. But, I can also see your point in wanting to be rid of the pouch and hope it is enough. Cataja was in a similar spot and went with an end ileostomy, but her pouch was not removed. She says she is doing well with Humira. It is the pouch removal that is the big deal surgery. So that is another option for you, if you are interested.
http://j-pouch.org/eve/persona...profile&u=3331032271

Jan

Thank you, Jan. You are incredibly resourceful, as always!

My GI does not believe Humira would help and he thinks it would be a waste of time to try it. I'm not having a reaction to Remicade, but it is losing some of its effectiveness for me. I am glad you mentioned Humira because I am recalling some people who have done well with it and I'll bring the idea up with my GI.

I am always confused about the concern regarding losing more bowel by having the j-pouch removed. Is the reasoning that more bowel, even if it's chronically inflamed and ulcerated, is better than less bowel? My GI has not brought the concern about less bowel due to surgery, but I have read other places that some people are concerned. It just makes no sense to me that there would be any benefit to the body to keep such a mess inside. If you don't mind, I'd be very interested to hear your take on it. And anyone else's too!

Thank you for your help!

I think I can address your question. Sure, the goal is to preserve as much small bowel as possible, even if it is not fully functional, and here are the reasons:

Surgery does not cure Crohn's and most Crohn's patients eventually need surgery, often multiple times in their lives. There is a limit to how much small bowel can be removed before health, and even life is threatened. So, the younger you are, the more of an issue this is.

In addition, there is a tendency for Crohn's to recur after surgery, so again, no cure, and now new inflammation to deal with. Each surgery also increases your risk for fistulas. So, with every resection, it is a roll of the dice. This is why they get excited when there are new drug treatments to help control Crohn's and why bowel resection is more of a last resort. So, if you are thinking of it as a way to avoid drugs or increased dosages, it may very well not work out that way and not only will still need the same medications, you expose yourself to more risks. Still, at some point surgery becomes necessary due to ineffectiveness of drugs or side effects.

Unfortunately, this is not like working on your garden hose, where you can just cut out the leaking sections and reconnect the ends. It is a complex interaction of physiology and anatomy.

The article below requires registration, but it is free.

http://emedicine.medscape.com/...cle/172940-treatment

Now, about switching to Humira. Even if you are not having an allergic reaction to Remicade, you are more likely to form antibodies against it because of the mouse protein. The fact that it is losing its effect is telling. I am not sure why your GI is dubious that Humira would be effective, but studies have shown that people tend to do well when switching. Plus, you can add methotexate to Humira also. For me, just not having to go in for the infusions is bonus enough, even if it did not work any better. The less intrusion into your life, the better, I think. Of course, the clinic does not make any money when you self administer, but I won't go so far to suggest that is a factor, especially since this is Kaiser... Personally, I was happy when my rheumatologist suggested Humira before Remicade for my arthritis. The drug costs are about the same, but the administration makes Remicade far more costly.

Maybe his concern is that if Humira is not effective, you will have burned your bridges with Remicade. That is because there is a tendency to have increased antibodies against Remicade if you stop treatment, then try to resume it later. Some people have successfully resumed Remicade, but something to think about.

Hopefully, that about covers it.

Jan

Lynn.
so sorry for all the difficulties in your decisionmaking. Are they sure you have crohns? From what I understand.. in the simplest sense, is that if a jpoucher has crohns and then the jpouch is removed... if crohns wants to keep attacking then it only has the bottom of the small intestine and onward and upwards. That can become dangerous. Dr. Shen said that they worry very much once a jpouch is removed if they find crohns.. because those cases become difficult and potentially very problematic. They have to keep a tough drug regimine in order to try and keep the crohns at bay.

Also.. surgery of any sort.. can trigger autoimmune stuff in people's bodies that are already genetically predisposed. so what may happen after surgery is really an unknown.

again.. I am so sorry you are faced with all of these complexities. But hopefully your research and thoughts will sort themselves and you will be confident of whatever decision you make.

Liz and Jan,

You bring up excellent points that are rooted in real experience and knowledge. Your posts are so helpful to me and I will include your ideas as I prepare my notes for meeting with a more experienced surgeon next month. If I learn anything new to add to the conversation,I'll post when I get back.

I'm grateful for your help and am wishing you very happy holidays.