is it worth it - also insurance question

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Regular Member

Date Joined Sep 2006
Total Posts : 246
   Posted 6/2/2007 1:26 PM (GMT -6)   
hello, ive lately been thinking about surgery as i really want to get some type of quality of life back. i think it will be some time off but im going to start educating myself so im prepared if it comes to it. my questions are is it worth it? im thinking of just getting a traditional ileostomy.
my other question is about the cost and generally what amount insurance picks up. i know it will vary from plan to plan but just trying to get some feedback. i have kaiser permanente. oh yeah am interested in knowing where some of the best hospitals are located?
thanks so much for the feedback!
- 28 y/o male, UC diagnosed - April, 2006
- Completed Prednisone taper on 4/13/07 - Tapered from early January through mid-April after being hospitalized from a bad flare.
- 8 Colazal daily, 1 multivitamin, fish oil (occassionally), 2 GNC Super Acidophilus Probiotics daily
- Began SCD diet on 05-07-07. Ongoing joint pain (likely RA), acid reflux, negative outlook, other common UC symptoms for over a year has driven to take up this dietary change. 

Regular Member

Date Joined Aug 2003
Total Posts : 335
   Posted 6/3/2007 6:57 AM (GMT -6)   
I have an Ileostomy due to UC and for me it was worth it.No more bleeding,vomiting and feeling like death warmed up.I also didnt fly on a plane until I was 43(6 months after surgery) because before the Ileo I didnt want to risk being caught short at totaly the wrong time. Only you will be able to judge after surgery if it was worth it or not but I would say that the chances are that you will feel it was well worth it. (I feel I said "worth it" a lot there lol.)

As for your second question I cant help you there because I am in England and I had my surgery done free on the NHS and I also get all my supplies free to. I am sure that someone will be along soon though to help you out with that.


Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 6/3/2007 1:36 PM (GMT -6)   
I think Kaiser covers your supplies pretty well. You may have a co-pay these days. As for the best Hospital, you're pretty limited I think, you'll have to use Kaiser, but thankfully this surgery isn't rocket science, it's pretty basic for a good surgeon.
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade, now on antibiotics and prednisone, currently awaiting liver biopsy to see where we go from here.

Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 6/3/2007 11:42 PM (GMT -6)   
I've had my ileo since I was 10 years old due to UC. It's the best decision my parents ever made for me. I've never regretted having the op. When I think back those pre-surgery days, there's no way I'd ever want to go back there.

I'm Australia and all our supplies are free here so can't help you with the insurance question.

Good luck :)
I have had an ileostomy for 31 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 6/4/2007 1:49 PM (GMT -6)   
It is SO worth it! I had mine done on April 17th, after almost 8 years of UC. The surgery isn't fun or the recovery, but neither is being sick all the time. But now that the recovery time is over, my life is so much better. I can go out to eat without worrying, I can leave the house without taking 5 immodium, I don't worry if there will be a traffic jam. And tommorrow I am taking my little boy to the mountains, a two hour car ride, limited bathrooms on the way, and we are going on the parkway, no bathrooms, and to the park, and I am NOT worried. It is really great!
As for the cost, I have BCBS of NC and I am going to have to pay about 3000.00 out of pocket. I think my hosptial bill was like 25000.00 and then the surgereon and the anthesthia charge seperate. As for my supplies it costs me about 30.00 a month. Alot less than the meds.
Good luck!

Regular Member

Date Joined Jun 2004
Total Posts : 231
   Posted 6/5/2007 11:29 PM (GMT -6)   
Call Kaiser and ask customer service to give you a case worker to talk to. I had an HMO when I got my ileo, and she helped me so much. Usually they work with people with cancer etc, so they may be hesitant at first to talk to you, but insist. They need to know that you will be needing a visiting nurse when you get home for a couple visits, and they need to find you an ET nurse. Mine in network nurse was a long way from my home, but she was free if I could get to her. I needed her in the beginning and I couldn' t drive that far, so my case worker helped me to be able to go to one by my house, and she talked to the people who make decisions, and they approved payment to this nurse. My case worker helped me before and after the surgery in many ways. They will have to hook you up with a supplier. Now I have a different plan and I have to pay a lot more, out of pocket. I use too many appliances, but many don't have to change that often, after a while. It is a change of life, but most of the time I am glad I finally did it. I can have my life back now, and just in time to be a grandma. Life is good.

Regular Member

Date Joined Jul 2007
Total Posts : 46
   Posted 7/6/2007 3:31 PM (GMT -6)   
Hi.  I want to answer your question about where the best hospitals are.  If you live in the United States, I would get an appointment with Cleveland Clinic in Ohio and/or Ft. Lauderdale, Florida; depending on where you're located.  I am getting ready to have a colectomy, and the doctors have been wonderful; absolutely the best.  They are very thorough with testing, and have a beautiful hospital and rooms.  The surgeons are in the top 1% in the country! tongue Good luck to us both.

New Member

Date Joined Jul 2007
Total Posts : 7
   Posted 7/8/2007 1:30 AM (GMT -6)   
I want to second the suggestion of the Cleveland Clinic.  Specifically Dr. Victor Fazio.  He is one of the top in his field and he still does Koch Pouches!  Always appealing for those fearful of wearing an appliance.
BUT  there are many many other very good hospitals and surgeons.  Dr. Bradley Bennett in Washington, DC, Dr Earl Pennington in Atlanta, Dr Bob Beard at USC....   This has been a way of life for my family.  And we are spread out and go to all these doctors.  Osotmies are fairly easy surgeries this day in age.
But more importantly I want to say....  I've had an illeostomy three times...  this one is permanent and I want to tell you (as I've seen others post the same feelings) IT IS SO WORTH IT!  When you are constantly feeling bad, can't go to dinner can't this or that once you submit to it you will (more than likely) never regret it and wonder why you didn't do it sooner!  I have not once since my permanent was done ever once wished I didn't do it.  I admit I am not "in love " with it but it has been the best friend to me I ever had.  It has given me back a descent life!  And believe me, unless you tell someone you have one, they probably won't even guess!  LIFE IS TOO SHORT TO SUFFER.  My first temporary was done at age 27.  I'm now 52 and my 30's and the first of my 40's would have been much better with it than without!  All the suffering I did for vanity!  And I still look darn good!
My family has been part of a genetic study at John's Hopkins since the 60's.  I should have known better!  I do now!
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