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Life after surgery


Sat, August 08, 2015 6:51 PM

I had surgery to remove my rectum and have a colostomy. I have severe crohns and nothing was working so surgery was the only option I had. Life has been a struggle since emotionally for me. I am twenty nine years old and my bottom area is not healing as expected. Right now I am going through dressing changes twice a day. I'm terrified I will have to go through skiing graphing to get the area the heal right. That would also count as my seventh surgery within a year.

I can clearly see the bag under my clothes but am starting to accept that and the gas is very annoying which does nothing for me when I have to return to work and sit in small meeting rooms. So just recently I have set up my pharmacy to start sending me my onto my supplies and founded out my health insurance will not cover the disposable closed end pouches as it is quote "a luxury item." I am a school teacher and have to use the stalls in the bathroom at times due to other adults using the adult restrooms. For me it would just be easier to switch out the bag and dispose of it instead of sitting there with kids coming in and out. The rinsing of the bag is not exactly a wonderful process. It can raise questions with kids as everyone knows privacy isn't something kids will abide by and I want this to remain private. So to the health insurance company I ask: what is so luxurious about pooping in a bag? Has anyone come across this and what was your solution? Is there a site I can go to and get them for cheaper than 65.00 a month? I am using holister brand. If anyone has any advice I would be very thankful for your kindness. 

FPO brita
Joined Aug 8, 2015

Thu, March 10, 2016 4:35 PM

 Reply posted for brita.

my insurance originally denied coloplast mio sensura sealed end bags but I kept after them.  they eventually relented and allowed the mio but a closed end pouch which has to be changed is not permitted because it requires more than the allowed one bag every two to three days so get used to living with dirty rubber pants on your stomach because that is all we are allowed. funny how if you left an infant in a dirty diaper it would be considered abuse.  the big problem is the cost of medical services and supplies.  If you have no insurance or medicare, you get 15-2- bags a mo. so don't get the poop all over the bag or you're stuck with it until you can change. and if you like to shower every day you will have problems with adhereing bags, they come unglued when they get wet.  so sorry to be the bearer of such horrible news.  hope you have a good support system because that is really necessary.  pick me up forums are nice but reality is a little more stark.

FPO dadnabbit
Joined Mar 10, 2016

Fri, February 12, 2016 7:11 PM

 Reply posted for mattee66.

I just had my  5th surgery as a result of Crohns disease. I have an ileostomy and have had one since 1998. You will adapt. It feels foreign right now but after time the colostomy will blend in as part of your body. I empty my bag often enough that I dont need deodorant but I know there are some commercially available. It will get better. I applaud you for sharing.
Barry

FPO bthys
Joined Feb 12, 2016

Thu, November 12, 2015 9:27 PM

 Reply posted for brita.

i'm sorry to hear that you're sort of struggling to adjust to life as an ostomate, but hopefully i can be of some help!

first of all, i got my ileostomy when i was 15 and am now 20, and the entire time i've been using the site ostostore.com (p.o. box 8553 atlanta, ga 30306 phone: 877 396-3887 email: info@ostore.com) and am able to find supplies for about 50$ including shipping. (it *** me off to no end that these aren't considered "necessary" by insurance companies and we should really get all of our doctors to protest or something) but at anyrate, i get the holister one-piece opaque pouch and it works pretty well! (except for after showering when the seal starts to disintegrate)

i never wash my pouch, just change it every 4-7 days and empty it a few times a day, kinda wiping up the opening with toilet paper as i go. i also always line the toilet bowl in public restrooms with toilet paper to prevent backsplash and choose a stall away from anyone else if i can help it. i haven't figured out what to do about the lingering smell, some people bring small bottles of mouth wash and pour a little in when they flush, but i just kinda shrug, wash my hands and leave!

FPO anhowert
Joined Oct 13, 2015

Fri, August 14, 2015 11:03 PM

 Reply posted for brita.

LIFETAKESGUTS.COM I was in your position in March. I am a week away from takedown. I have blogged my whole experience. Worth checking out at above link. Hang in there

FPO mattee66
Joined Apr 13, 2015

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