Seeking Recommendations for a Stoma Surgeon in Southern California

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5358
rosina88
Oct 24, 2010 11:04 pm
Hi!



My husband had an ileostomy over 30 years ago when he was a boy, and it has become so hard to deal with that he can barely leave the house anymore without problems.  Needless to say, it hasn't made our social life over the last few years much fun - no vacations, no dinners out, can't even make it to our kids' sporting events, unless they are close by and of short duration.



He has tasked me with researching the possibility of surgical correction of his stoma.  The idea of surgery terrifies him, but doesn't want to go on living like this any longer.  I have no clue where to start - it's not look USA Today publishes a list of top stoma surgeons.  What kind of doctor should I look for, what should their training be in, etc.?  We are in the Los Angeles area and if someone here has recommendations I would appreciate it!



I should add that he has been working closely with an ET for a while on a non-surgical solution, but his skin is absolutely disintegrating under the faceplate.  Something has to be done, and I am afraid that the solution is probably surgical.



I am grateful for any assistance anyone here can provide!
beyondpar
Oct 24, 2010 11:25 pm
There is so much to ask and find out before you get surgery......Since you are working with an ET nurse,  what is she or he saying and Im sure she should know of a surgeon or two in the Stoma dept..........But why is your husband having problems?.....Is his stoma recessed?..Is that the reason for the leaks beneath the wafer?....How old are the both of you?....Why has he waited so long ,  since you say he has been unable ot leave the house as of late.............The Pouch should be freeing you up tp leave the house..........ON your next post ,  share with the site what is going on exactly,  and for how long,  and be descriptive of his stoma, and the  illnes which led him togetting a stoma, his health and age and then Im sure this site will have a lot to share and add and it will ony help you both.



With regard to surgeons,  let me just say that your local ostomy support group I am sure has a list and can help you.



I am at a a loss for what I hear in the words of your post...........YOur husband has been an ILEO for over 30 years and knows no doctors or GI guys or colorectal surgeons?



Continue to post and you will get the help you desire...MIchael
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funnygurl
Oct 25, 2010 12:20 am
I would join an ostomy support group and ask the people there who is good.
Pinky
Oct 25, 2010 2:14 am
Hi Rosinna - what part of Southern California do you live in?



If you are near me (North San Diego) - I can give you some ideas.  Otherwise you should consider a colon and rectum surgeon at your nearest UC Medical Center.



And as was mentioned, your WOCN and local UOAA support group will have a list of surgeons they have used/worked with, with good results.    



Just watch out for community "general surgeons" - they can sometimes do poor quality work even though they think they are competent with something "as easy as an ostomy"!  

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rosina88
Oct 25, 2010 3:49 am

Thanks for the replies. My husband belongs to a local UOAA, but no one has had any suggestions, and the general surgeon that his ET suggested basically told him the surgery would be horrible, complicated, and messy, which scared my husband off.

Michael - my husband's stoma is too active and leaks all the time, sometimes disastrously. The worst part, though, is the skin problem surrounding it - the skin is literally disintegrating, and the appliance cannot attach securely to it. He and the ET have gone through every brand of appliance and bag and adhesive on the market. He's consulted with dermatologists. My husband was 18 when he nearly died from Crohn's and had the ileostomy. He is now 54. Why has he waited so long? It just kind of crept up on us over the years (we've been married for 16 years.) He is also not an "early-adopter" of new trends in things - when we first began dating he was wearing the same type of appliance he used when he first got the ileostomy!

I have been getting more and more frustrated by what is going on, so I have volunteered to do the legwork on this - I am not an ostomate, but I'm trying hard to get up to speed on what I need to know and what questions to ask. He has been going to a community hospital, he has been getting advice and referrals to community doctors, and I think he should be consulting a doctor at a university hospital like one of the UCs. Pinky, we live in the Inland Empire, but if you know someone good in North County, I would be glad to hear it!

One more thing - I did not mean to imply that my husband is an idiot about this. He just doesn't like change, doesn't like to go to doctors, and knows he will need surgery to move the stoma to another area where the skin is not falling apart. This will likely involve a ton of time away from work, and it was pretty traumatic for him the first time around, adjusting to a stoma. My wish for him is to find a doctor who knows his/her stuff about this, so that he can get the best help available. Thanks for your time!

 

Words of Encouragement from Ostomy Advocates I Hollister

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ok girl
Oct 25, 2010 7:45 am
When I first had my surgery I had a very bad infection in my colon area and came out with a ileostomy. The surgeon got the stoma kind of sideways and it kept leaking under the flange and caused the skin to get very very red and blistered, and the flange kept falling off. I had to go back in and he put it down and I ended up with a colonostpy. That may be what your husband has to do. I have had no trouble since. Make sure you listen to the people on the sight as they are very smart about everything, I would trust their judgement....Find a good surgeon.
beyondpar
Oct 25, 2010 1:25 pm
Rosina,



   While you are looking for that surgeon to possibly help,  Get some  KARAYA Powder  and before u put your husbands Wafer( the first thing that gets put around the stoma) on sprinkle the medicated powder on the blisters..It will sting ,  but let it work for about a minute,,,,,blow residue off or brush off with a dry cloth  and then put the wafer on...............It should help..........It most certainly did for me.....it was like magic..........the blisters healed quickly and the wafer then was able to stay on longer and longer.



Let me know how it works.



         Get KARAYA POWDER............It really saved my life.  As I read your story  it was as if you were talking about my early experiences with leaks and blisters.......that is why I asked how long you guys were ILEO's...........Try it and again let me know..Good Luck   Michael
Pinky
Oct 25, 2010 7:40 pm
Pinky, we live in the Inland Empire, but if you know someone good in North County, I would be glad to hear it!





Hi Rosina - These are the surgeons the UOAA support group of North San Diego County refer to (they practice at Tri-City Medical Center in Oceanside):





Coastal Surgeons



Drs. Kroener, Deemer, Fierer, Natuzzi



3998 Vista Way, C-200

Oceanside 760-724-5352

http://www.ostomysocal.org/osgnsdc/newsletters/OSGNSDCnewsletter_10-10.pdf



I personally have experience with Dr Deemer.  He saved my Dad's life about 20 years ago when he had a ruptured aortic aneurysm.  He is a general surgeon, but very highly skilled.



I also know some of the surgeons at Palomar Medical Center.  If you make a profile here, we can talk by mail regarding some of them.



My own surgeon is an oncology surgeon at Sharp Memorial in San Diego. I have also had good reports about the colon and rectum surgeons at UCSD. There is a great GI disorders support Group that meets on the 3rd Friday of the month in La Jolla at the Moores Cancer Center, 11:30-1 pm.     

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tello
Oct 30, 2010 6:59 pm
Hi Pinky,  I would love to get to meet you as I live in San Diego also.  I am considering having an Ostomy (very complicated story) but I am getting more and more scared about it!  I think part of the reason is because my husband seems to be so scared of possible results.  Since I can't post my phone # or email here I don't know how we can make contact.  I would love to speak to you on the phone or meet you in person.  If you have any suggestions please let me know.  



Which gastros and colo-rectal surgeons do you recommend in san diego county?  I am willing to go anywhere in the county.  Luckily I have a PPO Insurance so I can choose which doctors I want to see.  I live in North County also but I have been to Scripps in La Jolla and UCSD Thornton.  Have you ever heard of Dr. Donald Ritt (Gastro) or Dr. Michael Worsey (colo-rectal surgeon).  If I have an Ostomy, I need to choose the best surgeon possible.  I look forward to hearing from you soon!



Lisa
wondering if
Nov 07, 2010 4:55 am
I love my Los ANgeles colorectal surgeon, and so do all my daughters. He did a great job for my cancer, and he stays on top of every complication. He is pro-active and wonderful and clearly is not "in it for the money." He loves his patients and gives excellent care.



I recommend that you visit him, asap, with your husband.



His name is Mohammed Pourshahmir, and I'll give you his office phone number and address if you email me on this site.  You could also probably find him in the Encino phone directory, or an online search. He works out of an Encino office and does his surgeries at Providence St. Joseph's hospital in Burbank.



He is fabulous. Good luck. Don't delay in seeing someone. Your husband needs relief asap!
rosina88
Nov 21, 2010 2:50 am
Thanks so much for the suggestions and tips, everyone - I'm sorry I've taken so long to get back on here, I managed to get the flu!  Michael, my husband never had any luck with Karaya powder.  I'm glad it worked for you, though.



I think my husband will need to go back in for surgery and have the stoma repositioned.  We will probably meet with a few surgeons in consultation after the first of the year.  Thanks for the referrals!