wassup peeps? me again.....hehe

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Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/7/2007 2:07 PM (GMT -6)   
Hi everyone!

i have been resurrected.....just wanted to say hello to everyone and let you know i am back.....i had to do some self-discovery for a while

anyway, wanted to say i am feeling pretty good, but it can be so frustrating dealing with this, i have been great since my surgery to get a temp ileostomy, however, I am still having fistula related problems....

i am starting to think I should have had a total colectomy instead of messing with the idea of this temporary solution....now i think i might just keep this ostomy forever instead of having it reversed?

Have any of you others had a temp ileostomy, and then ended up keeping it instead of getting it reversed?

or how about going straight from a temp ileostomy to a total colostomy?



on another note.....yippee....football is back! see the poll above and vote for your pick to go all the way!
"All we need is love....love is all we need"


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 9/7/2007 2:27 PM (GMT -6)   
Glad Bag - I was WONDERING where you were! Can't help with the temporary thing ... mines forever. BUT, I can say, I have had fissures, fistulas, abcesses, and 'riods - all together 9 surgeries on my wee bum, which spanned all of 7 PAINFUL years and left it looking like a mine field explosion. Since I had my rectum removed - poof! Gone! Nooooo problems. While I still am having a hard time dealing with the emotional issues of my new ostomy, I can sit without feeling like I am sitting on shards of glass. Good luck in what ever you decide.
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 9/7/2007 2:29 PM (GMT -6)   
Oh. And I chose to vote for the Kansas City Chiefs. It was a difficult decision being that I so not have a great deal of knowledge about football, I did however live in Kansas City when I went through art school. I hope I made the right choice. Is there any money riding on it? :-)
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/7/2007 3:01 PM (GMT -6)   
hehe.....i am gonna bet all my friends.....


i try to stay away from sports betting....i prefer losing my money playing Texas Hold 'em

i think i may need the rectectomy too one day.....(not sure if that is right, but it sounds cool anyway)

it was funny on my application for disability a few years ago (i am working again now) the form asked something like 'what work activities are you unable to perform due to your illness?' I put "sitting" "standing" as something i was unable to do...and it was true! basically, i could not work unless i was allowed to lie down......now i get to work from home and actually can lay down while i work.....

ahhhh.....the joys of modern technology!

Ttul......
"All we need is love....love is all we need"


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/7/2007 4:56 PM (GMT -6)   
Glad to have you back!
 
To answer your question, I started out with a temp ileostomy to "let my colon heal." It never did, so I had it removed 8 months later. They left the ileo in place, since it was working fine, and I was out of the hospital in 5 days. I also had fistula issues, but they disappeared into the abyss with my colon and rectum.
 
If you don't mind the bag and want to be rid of those fistulas once and for all, it's definitely worth doing.
 
Keep us posted!
Cecilia

Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 9/7/2007 4:59 PM (GMT -6)   
I thought the topic of that poll was who would win the Super Bowl.

I keep looking.........where is the New England Patriots option!!

I can't even say i'd give my colon for another Super Bowl.
 
Crohn's for what seems like forever
Bagged in August 2006


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 9/8/2007 1:56 PM (GMT -6)   
I had a temp for about 6 years and then went the permanent route. I, too, had massive fistula problems--along with a few others!! Since, I've had the perm. done I have actually been in remission. Based on a post I just read on another topic, I am a year older than you and I, too, was also diagnosed at 15. I was never even close to remission before and on tons of pain killers the last 4 years before I did the perm. I hate that I can't go back and get hooked up but I know my quality of life was in a word-pathetic-before. What really made me decide to do it was a death of a friend. It's hard to be twenty-something and have one of your best buddies die. His son is also the same age as my daughter so it really messed me up. We (my hubby and I) were talking about our friend one day and he says "y'know Brian really lived his life. He never waited around for cool sh&! to happen. He made it happen!" Boy, that conversation really struck me. I was not living--I was existing. I wanted others to feel that I had lived if I were to die tomorrow. It made the decision to do away with my twisted, tormented, diseased mess of a colon much easier. My doc wanted me to stay on some form of medication after the surgery b/c of the severity of my disease. However, I have bad reactions to tons of meds and the rest is completely ineffective. So, we (doc and I) are just winging it and praying that the Crohn's holds off. Lucky for me it's been almost 2 years. When I think about it I'm truly beside myself with wonder and awe of that miracle.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/8/2007 2:33 PM (GMT -6)   
Hey Jen - Once they removed all of my diseased colon, rectum and several feet of small intestine, I was not sent home on any medication therapy at all. Just a little prednisone to ween off of which I could not do before surgery or during the hospital stay. Took me an awful long time to finally get off of that last 5 mg of 'roids. I have been in remission since 1984 - that was when they did the perm ileo. I will keep my fingers crossed for both of us!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/8/2007 6:14 PM (GMT -6)   
Jen,
I'm sorry that you lost your friend at such a young age. sad I too had a good friend die of pancreatic cancer at age 44, and watching what she went through really influenced my decision to have a proctocolectomy, because I did not want to end up with colon or rectal cancer.

That was a year ago, and I have been in remission from Crohn's without having to take any meds. I'd like to keep it that way, because the meds have side effects that I don't miss having to deal with. I'm glad you're doing well.
Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 9/9/2007 4:04 PM (GMT -6)   
Thanks for your kind words. I'm so glad to hear about these long Crohn's remissions!!! Even my doc does not believe I could be one of the lucky few (he did not say that but it was obvious) but I'm hopeful!

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 9/10/2007 12:13 PM (GMT -6)   
wow, i am glad you guys are doing so much better. I guess I will just have to think things over. I think I am going to wait out at least unitl it has been a year since my temp. before considering the total colectomy.

as for living to the fullest.....i agree with that, especially when you are up to it physically.....

since my surgery in April, I have had one of my most active summers in a long time, i have forced myself to do fun stuff almost every weekend.

Hope you all continue to feel better....talk to you sooner than later.....
"All we need is love....love is all we need"

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