Hello: Are there any folks out there from the Seattle/Puget Sound area in Washington who have ileostomies? I'm just 3 weeks post-surgery. I had a j-pouch that failed and now have a bag. I'm having a hard time adjusting so I'm searching for other ostomies in my area to communicate with and see how they learned to adjust. I'm very petite, 45 yrs old, married for 17 yrs, no kids, attorney with my own law practice, and just can't seem to get back to being my old self. I think I'm just feeling sorry for myself which is no good. I'll really be much better off than with the j-pouch it's just so hard to adjust to wearing a bag. Thanks.
Catherine
aka MaggieCat
Issaquah, WA

Hi Catherine -

I responded to your other post...

I live in Sammamish, and have a temp. ostomy, so not apples to apples, but have had it for over five months now and would be more than willing to share stories, etc.

Also on this site is j-slouch. He lives in the general area as well, and is a great person to talk to. I'll let him chime in more though.

PM me if you'd like to chat.

Lisa

Hey MaggieCat,

I'm here in Woodinville, or as I call it, the top of the traffic jam. I was living in the Issaquah Highlands just a few months ago. Remember all that snow in Jan-Feb?

Sorry to hear you pouch failed. Who was you Dr.?

I'm about 2 months from surgery #1 (pouch construction and ileo) so I have been working with the bag for a while now. I'm supposed to get the bag removed and go through the pouch in a few months but I may not rush it. I'm just starting to feel better and I want to enjoy it for a while before going through another surgery.

So it sounds like you've only had the bag for 3 weeks if I am reading this right? For me it's getting easier to deal with as the weeks go on.

I'm getting pretty good at emptying it quickly without getting the grossness on my hands.

Not trying to be funny or anything, but the females with bags have an easier time when it comes to bag emptying. You don't have to worry about cetain anatomical features that tend to get in the way.

Anyway, I'm not saying life with the bag is a picnic, but I think it gets to be less of a "thing" after time.

I sometimes ask myself, if my pouch doesn't work could I live with the bag, and I just tell myself things could be worse.

Take care!

dave

Hello Catherine....Although I am not from the Seattle area, I am able to relate to your situation. I am also 3 weeks post surgery(3/20) and am having a difficult time adjusting to having a bag. I had my first step surgery and have an end ileo. I thought I would be a 2 step but came out of surgery to find it had to be done in 3 steps. I feel like I'll never be normal again...and changing the wafer/bag can throw me into a panic mode until it is taken care of. I am a high school guidance counselor and am anxious to get back to work, but can't wear any of my clothes, worry how things will look once I do go back, how I will manage the time needed to empty the bag, and all the things you are probably thinking too. I am told it will get better and that is my prayer. Just so you know, I have spent many days feeling sorry for myself too, trying not to cry, and trying not to think the worst when I have a "weird" feeling or strange looking output in the bag. Let's hang in there, it has got to get better. NYS

quote:

quickly

Dear Catherine;

I also had a j-pouch surgery that went bad.I am on a temp ileo and am at a point where i am trying to work with with dr remzi at cleveland clinic to decide which direction to go ,either a repair of the j-pouch or go to a k-pouch.I do not want to have a perm bag for life it is hard to deal with.
I have found out using marshmellows prior to replacing the bag and cleaning ,and showering is so much eaiser,I take 6 prior to taking off and cleaning ,than shower and than take 2 more to keep things quiet while putting things back together,
Hope all goes well for you ,as time passes it does get eaiser.God bless.

i'm from arlington, my mom used to go to local ostomy support meeting, i went a few times too, they are great and lots of people like you in our area- look for these support groups- or use craigslist or something. usually people meet at church or hospitals 1 time a month.

How did you pouch fail? Who is your surgeon?

Hi, I'm up in the Lake Stevens, Snohomish area. I had an ileostomy in February and am preparing myself mentally for the J-pouch surgery. My GI suggested that I talk to Dr. Billingham from the Northwest Colon and Rectal Clinic, Dr. Sinanan from U of W hospital, and Dr. Thirlby from Virginia Mason. If anyone has experience with these doctors I would love to hear from you.

Hi . . . I am from the bottom of the traffic jam in Auburn, South King County.

I am a NW Colon & Rectal Clinic patient, JaniceW. My initial surgeon was Mark Kimmins, but he left a year ago to practice in the tundra (Alaska.) I have lonly seen Billingham in the hosptial during one of my four surgeries. The surgeon who was doing his fellowship during my year of surgery, Dr. Rodney Kratz, has taken over my care, and I like him. Very straight forward: not prone to ignoring symptoms and issues, but will tell me bad news if it is due.

By the way, my takedown was April 15, 2003, I have been treating anal fissures and stricture at the anastomosis (where the pouch is connected to the sphincter) and I have been on disability since then. My understanding is that I am an anomaly in this practice, oh goody goody. Don't you just love being the exception to the success statistics?

Hi Debra, Welcome to the site. I met Dr. Kratz when I went to a consultation with Dr. Billingham. I decided that I felt a little more comfortable with Dr. Thirlby though. He answered all my questions and really put me at ease. I see him again this coming Friday and I am hoping that he will give me a surgical date for step 2.

Hi Janice -

I met with Dr. Thirbly for a consult before my surgeries (I ended up being a 3 stepper); I think he is more than qualified, but if you want to talk to one more person, I would suggest Dr. Oliver Biggers. He is private practice in Bellevue but is affiliate (and does his surgery) with Overlake.

I LOVE him. Amazing man. Amazing talent. And, the beauty of him being private practice is the access you have to him. With Thirlby, you are in the Virgina Mason pool - you get the resident on duty if he isn't available. For me, I wanted to know that my surgeon was always around, and Dr. Biggers is.

Furthermore, he helped pioneer this surgery way back in the day at the Mayo clinic.

Here's his phone number if you want to give him a buzz, just to see what he's like: 425-453-8355. Also, here's a link to a site on him:
http://cgi.photobooks.com/scripts/troll.cgi?dbase=overl...gers&pict_id=9603330

Debra - I responded to your other post...maybe you need a second opinion? (P.S. I grew up in Auburn - at the top of the hill above Emerald Downs).

Good luck!

P.S. For the record, I am 4 months post takedown and doing great. Have never had butt burn, and only go about 6 times a day.

Hi all, I am from Lakewood and I am now 3 weeks post surgery and have a temp ileo till my take down next year. I am glad I found this site and can talk to people going through the same things.