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Crohn's Disease Forum » Surgery » Stoma Subforum » Joining the stoma club


01-30-2013, 08:24 PM   #1
Dukeis
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Joining the stoma club

Seen the Colo-rectal surgeon yesterday. Really liked the doctor. Surgery is scheduled for March 20th. This whole thing still seems a little hard to wrap my head around. Yesterday did put it all into perspective though sitting in the waiting room. The surgeon sees his patients in the cancer center. All I could think was I bet a lot of these people would tell me I have been given a great gift by knowing I have dysplasia and can have it removed before it is cancer.

They are going to do the surgery laparoscopically, but he warned me sometimes he starts of laparoscopically and things could come up doing surgery that would cause him to open me. I meet with him a week before the surgery to go over any other questions I have and to do all the preop stuff.

I know it is better not to be flaring when I have the surgery, but a part of me thinks it would seem easier to deal with if I felt like crap before hand. To think I'm going into the hospital and they are going to make me feel worst just seems weird. I know if my colon is left in there things would get a whole lot worse then just Crohn's. We all tend to think about the here and now, not about what will happen down the road at some point. I think that is why I have a hard time thinking about this whole surgery thing,
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Crohn's Disease. Diagnosed 1992
Total Proctocolectomy with permanent Ileostomy
March 20th, 2013 N.A.H was born!
01-30-2013, 08:57 PM   #2
smallfry
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Hey Dukeis,
Welcome to the club. You have some time to prepare. I suggest watching some youTube videos on bag changes and supplies to use. One of my favourites was ostomystory's how the change your ostomy bag video. Fullfrontal ostomy and Maggie Baldwin are good ones to check out as well.
I had laparoscopic done for mine and it was great for healing time. Less muscle is cut through so you're not as tender Hope it works out for you to have it laparoscopically!!
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Crohn's disease since 2001
abscessing/fistula since 2006
seton placement for 8 months
4 cases of crohn's related iritis


Diverting Loop Ileostomy Sept.19 2012
Proctocolectomy April 16th, 2014 and off all major meds

Meds
Past - asacol, prednisone, imuran, Remicade from 2001-2008, flagyl, cipro, Humira 2011-2013, 10 months of IV meropenem
Current - T3's, prozac, clonazepam, probiotics, caltrate plus, multivitamin, vitamin D
01-31-2013, 03:10 AM   #3
Terriernut
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I only had emergency surgery, and very little time to prepare myself for it mentally. My recovery time was longer though because I was so ill.

Mentally preparing yourself for what is to come will be vital. And not being in a flare will as you know help your recovery immensely.

All well and good to say it, but to have that looming before you is not anyones idea of something to look forward to!

You Tube is a good idea. Getting a fake stoma is a very good idea, in order for you to find the best spot for it. Have you been set an appt with the stoma nurse yet? They (if they are good) are a godsend those stoma nurses. I hope you get a good one! Are you going to Fayetteville for the surgery? (I lived in Bentonville for 12 years)

Don't forget you have all of us stoma buddies here too. We are here to help!
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Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
01-31-2013, 09:41 AM   #4
2thFairy
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Welcome to the club Dukeis! I have been following your other posts leading up to this. Getting a stoma is not exactly what you had in mind for your life, but I am glad you are able to find an alternative to avoid developing colon cancer. We are all here for you!
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Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
01-31-2013, 10:38 AM   #5
Nyx
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Are you getting an ileostomy or a colostomy? Either way, welcome to our little club Any questions, concerns, vents, fire away! We're a pretty helpful bunch, if I do say so myself...
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Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

01-31-2013, 11:13 AM   #6
Minionaire
 
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Join Date: Nov 2011
Location: Edinburgh, United Kingdom

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We're making the leap into the stoma club together (albeit I'm a month earlier, 20th Feb). See you on the other side!
__________________

Dx - Crohn's colitis, 2005

Pan-proctocolectomy and end ileostomy surgery. Alf the stoma born 23rd Feb 2013.

Re-Dx - Ulcerative Colitis, Mar 2013 (Post surgery pathology on my removed colon concluded my "Crohn's" was actually UC!).

My surgery blog: http://davesbelly.blogspot.com
01-31-2013, 01:17 PM   #7
Dukeis
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Thank all of you for your support! It means a lot to me to know there are people here who have been through this whole thing and are willing to answer my questions.
01-31-2013, 01:24 PM   #8
Dukeis
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Are you going to Fayetteville for the surgery? (I lived in Bentonville for 12 years)

Don't forget you have all of us stoma buddies here too. We are here to help!
I'm having it done at the UAMS in Little Rock. Don't know how long it has been since you lived here, but the UAMS has change a whole lot in the past several years. They built a new hospital that just opened a few years ago. It is a vast improvement over the old one. Thing I like is it has all private rooms. They have done a lot in recruiting of new doctors also. My surgeon studied at Yale and John Hopkins.
01-31-2013, 01:30 PM   #9
Terriernut
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I haven't lived in Bentonville/Bella Vista since 2000 when I started my world travels. Sounds like a cool hospital down there ya'll! (or should I say mi lord? LOL)
01-31-2013, 02:33 PM   #10
2thFairy
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Ya'll? Now yer speakin' my language!!
01-31-2013, 02:45 PM   #11
Dukeis
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Ya'll? Now yer speakin' my language!!
What I always remember in Texas is "Howdy".

I don't know what my accent is though. I grew up in New Orleans and have been a hillbilly for almost 30 years now.
01-31-2013, 02:50 PM   #12
2thFairy
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My parents are yankees, so I have very little Texan accent. I do say Howdy and Fixin' To, however.

And of course, any kind of soda is always referred to a Coke.
01-31-2013, 02:56 PM   #13
Dukeis
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That is funny my wife is a yankee, but you can't tell by her accent. She came here when she was 10 and is the only one of her family still here. Funny thing is she is the youngest and the only one to pick up the Arkansan accent. Her siblings think it is funny she sounds nothing like them.
01-31-2013, 03:31 PM   #14
Terriernut
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Even after being away for so long, when I get excited or angry..my Arkie comes out and I twang away. But I was born in Colorado, and native coloradans have a bit of a twang as well.

I otherwise have now picked up an English accent, with the occasional arkie, canadian, and gawd knows what else. But the ya'lls STILL come out quite frequently. The LOOKS I get are not good!
01-31-2013, 03:33 PM   #15
2thFairy
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Hahaha! You're a mess!!!
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