Comments on: HI EVERYONE

By: Kyla

Kyla — Wed, 15 Dec 2010 05:36:48 +0000

to see if the 3rd RVC repair from july 2010 workd if so i can schedule to get the colostomy bag reversed. ur story touchd me alot and i just wantd to share my story with u and i hope u r doing gr8 now. im super nervous, were u nervous and scared like me.

By: Kyla

Kyla — Wed, 15 Dec 2010 05:34:13 +0000

hi Casey, my name is Kyla i am from illinois. i am 26 yrs old. i had a rectovaginal fistula after i deliverd my son may 2008 and it took 3 doctors telling me nothing was wrong with me and that it is impossible to have my symptoms which were well u had a RVF so u know those symptoms and they were extremely embarressing, and after a year and a half and 2 treatments for cervical cancer i demanded to see a gastro and he did a colonoscopy and found the RVF and since oct 2009 to july 2010 i have had 3 RVF repairs cuz the 1st two faild and i had a colostomy bag placed during my 2nd surgery jan 2010 and so now it is dec 2010 and im FINALLY going back in to see if the 3 RVC

By: Rob

Rob — Sat, 19 Jun 2010 04:27:00 +0000

Awesome! Thanks for sharing, and keep your spirits up.
My son was born with issues which required that he have 2/3rds of his colon removed.
I happened upon your site while researching his situation.
Thanks for the time you’ve put into this. It seems to be helping a lot of people (myself as well).

Take care!

Rob.

By: kim

kim — Fri, 29 Jan 2010 15:26:46 +0000

hi casey! i just want to point out that you have any amazingand touching story. my name is kim and iam from the small town of Oakdale CA. i was diagnosed when i was 16 with what they call FAP (Familial adenomatous polyposis, which is an inherited disorder characterized by cancer of the large intestine (colon) and rectum. i first had my surgery when i was 21. about 10 months ago. i was told that i would go in for a 6 hour surgery at UCSF with the outcome of a j-pouch. instead i got a 12 hour surgery an a right sided ileostomy bag. my body didnt take to the surgery and i had emergency surgeons called in because my intestine was also cut too short and couldnt attach to the anus. the surgeons stretched, pulled and attached but only to realize that it was cutting off blood circulation and causing me to turn blue. they attempted that 3 times (and boy did i feel that later lol). after being hospitalized for 10 days i went home feeling good. 3 days after i got home i started feeling depressed because i could not get my wafer to attach to my skin with out any problems. i had an allergic reaction to the paste which ate the top layer of skin. so after multiple 2hour trips to my surgeons office and 3 weeks of pain, discomfort, complications things started to look better, so i thought. a few days after that i found myself sincerly dehydrated. i went to my local emergency depatrment to find out that i was near hospitalization and kidney failure. for awhile there i found out that the e.r was my second home because i was having so many internal problems and my body responded badly to where i was dehydrated every 1-2 weeks. i had 15 emergency visits with 3 months. after resolving the problem and containg my liquids it looked well for 1 month. late summer i started vomitting. found out that my j-pouch was filling with fluids because my body couldnt process fast enough. i had to have a rectal procedure to drain the pouch under anastesia. i know have to get that every 6 weeks. i had multiple complications, with that for 9 months now. but received good news that i have a reversal surgery coming up next month to try and reverse this. and have high hopes that it is a positive outcome. if all goes well , i will have my ileo taken down in 2-3 months following.

By: Casey

Casey — Wed, 09 Dec 2009 01:05:44 +0000

Leanne! your story sounds so familiar thank you for sharing!! you have literlly been through hell! it’s unbelievable how doctors and nurses can treat people that way, where is the humanity you know? they only see us as another case or cattle sometimes. anyways, my email is casey.duncan6@gmail.com please let me know how you are doing these days and let me know if i can help. stay positive!
-Casey

By: Casey

Casey — Wed, 09 Dec 2009 01:00:42 +0000

thanks Bill that is so sweet!

By: Casey

Casey — Wed, 09 Dec 2009 00:59:50 +0000

hi david! of course please use any pictures you need to! all of them are from my library and i have others if you need specifics, anything to hepl other going through the same thing! i changed my email to casey.duncan6@gmail.com please email me and i will let you know my address to send me a boocklet. good luck!
-Casey

By: Casey

Casey — Wed, 09 Dec 2009 00:55:11 +0000

hi AJ- I take codeine along with lomotil. It’s a painkiller like vicodin or percocet jsut without the tylenol, so it tends to constipate normal people and slow down us fast digesting people. if your docotr is willing you can always up your lomotil or double up with codeine. it’s tricky to get your intestines on schedule i’m still trying to figure out of it’s what i eat or when i take my meds a year later. good luck and i changed my email to casey.duncan6@gmail.com if you have questions or comments feel free!!-Casey

By: Eric

Eric — Tue, 24 Nov 2009 07:32:58 +0000

Hi David, I can't respond for Casey, but I can tell you that the content of this website is licensed under Creative Commons 3.0

By: David

David — Mon, 23 Nov 2009 10:10:22 +0000

Hello Casey. I’m a graphic designer working on booklet for the french federation of ‘ostomied’ patients, and I’d like to be able to use one or two details of your pictures. First question, are you OK with this ? Second question, what kind of credit should I put ? (They seem to be personal shots, so obviously no ‘professional’ copyright release should be necessary.) If youd like a copy of the booklet when it’s printed (if all goes well in december) let me know how to send it to you. Yours is a very moving and courageous testimony. Hope things are much better now.

Best wishes – David