Colostomy Pros/Cons, please help!

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crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/29/2008 8:57 PM (GMT -7)   
So as some of you may know from a previous post, the colostomy is pending... to get or not to get? I really am nervous about all of the ins and outs of the whole thing because I already get the fact that it could be my ticket to "normal" life, but how is it to live with? do you have to dress differently to accommodate it? Does it ever leak/come undone to make for an embarrassing event? And i've read about how it can be awkward intimately, i get that. But also is it hard to sleep with. shower with, etc?
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/30/2008 9:22 AM (GMT -7)   
really, anyone have one of these, someone must! i need some help i have no idea what to expect. I really wish i could actually meet someone with one and see what it's like and be able to talk with them about it.
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


ddr030505
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 7/30/2008 9:33 AM (GMT -7)   
My grandfather has one and has had one for over 40 years. He lives a very normal life and truely when he needs to empty his bag he says "got to go to the restroom". The only time it has really ever made for a situation of smell was just recently and thats because he is now w/c bound (from bone ca, and diabetes) and grandma changes it in the living room so he doesn't have to go all through the house.. It basically smells like he farted. but he is 82 years old and could care less :) I feel he lived a very normal life.. As far as emotional he never really talked about that part but for me he seemed normal.
Hope it helps a little with your question and sorry I couldn't give you a personal account.
23 year old married female Diagnosed Sept '03 still fighting for remission longest break was 9 mths
Humira- 40 mg every 2 weeks (just took my first 4-12/6/07)
Asacol 6 400mg tabs aday
Entecort 9mg aday
Live Laugh Love, Live by this and you can fight anything!!
There are moments in your life that makes you and sets the course of who you're going to be. Sometimes there little, subtle moments. Sometimes, they're big moments you never saw coming. No one ask for their life to change, but it does. It's what you do afterwards that counts. That's when you find out who you are.
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/30/2008 9:45 AM (GMT -7)   
We have a Ostomies forum on Healingwell. You might want to ask them, I don't think too many folks on here have ostomies. Those that have posted before talked about how much better they felt with one. Try the Ostomies forum and see if they can help.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


crohnie1985
Regular Member


Date Joined Nov 2007
Total Posts : 140
   Posted 7/30/2008 11:31 AM (GMT -7)   

Hello,

I had to have a temporary colostomy for about 3 months and there were alot of things that I had to get used to. Overall it was not bad if it were a life or death situation, and there were not any other options. My first reactions after I had the surgery were not good, it was very scary for me to see myself and my internal organs sticking outside of my body. But I did very well taking care of the ostomy bag anyhow, I did well keeping the area clean having one of those showers with the hand held sprayers made it easy. Yes there were leakage issues but there were products that helped, just that I had to do some research on my part to find them. Was I glad to have it reversed, yes I always felt grossed out handling my own waste, but after a while I just did not care. I guess the worst thing was for me was it was painful and still to this day I suffer ongoing issues because of the surgery. One thing that I do remember was the sounds that were present as my waste passed from my body because it was in front of my body, and  I stayed away from social activities because I felt embarrased when it happened. I guess some how after time passed I would have got over that. Thats what I remember about the whole thing now that it is in my past, could I survive if it was permanant, I am not sure, maybey. Hope that helps, I am just being honest.


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/30/2008 11:41 AM (GMT -7)   
thanks for the advice, i really don't want to get it anyway, i think i'm going to try clinical trials for stem cell research before i try that surgery.
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 7/30/2008 11:43 AM (GMT -7)   
I recently saw a cousin at a fmaily reunion. She had a colostomy in her early teens due to  a birth defect. She is now 62, has beebn married, had a child, a career, etc. and has a a completely normal life. Really, an ostomy relocates the orifice from which we eliminate feces . .  yes there are adaptions to it, but every exam,ple I have seen is that it is a ost beneficial tradeoff in the form of minor inconvenience to remedy a much more serious emdical problem. I can;t tell you what to do, but to me if there are real medical benefits, and if a procedure promises significant improvement, go for it.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 7/30/2008 12:08 PM (GMT -7)   

Well I have had an ILEOstomy since 2002 with one reversal that lasted 6 months.  I am no different than I was before, well that is not true, I am more active now!  I have a family, shop (for regular clothes), travel, go to college (second time around), work, excercise 5-6 times a week, ride horses, kayak occasionally and anything else I feel like doing...for me, it has given me my life back.  My diagnosis is Crohn's and although I originally had small bowel problems, the last 10 years has been colon/rectal involvement. 

Most people who know me have no idea I have an ostomy.  Just like your stomach, an ostomy can make noise...it really isn't any different.  As far as leaks go, I have never had one that couldn't be fixed with a change of product.  Bodies change (and stomas, too) so sometimes you have to find a better fit...kinda like clothes!

Visit the Ostomy Forum...there are many helpful threads, especially the ones where members are trying to get all the info to make a decision.  For me, I made mine before I found this wonderful site, but wouldn't have changed my outcome yeah Good Luck!


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 7/30/2008 12:16 PM (GMT -7)   
Yes, I agree, I think if you go to the ostomy forum and post this you will be overwhelmed by the positive feedback.

crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/30/2008 3:15 PM (GMT -7)   
okay thanks i will post it, and also, OHIO, so im confused did you get a reversed and not have it anymore or do you still have it?
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 7/30/2008 5:54 PM (GMT -7)   
I now have a permanent one!  First two were "temporary" loop ileostomies (#1 was surgery complications had it reversed after 3 months then requested #2 and kept that one for MANY years) and this past February I had a proctocolectomy(removed colon/rectum), so it's for keeps...

Fruitcake
Regular Member


Date Joined Aug 2006
Total Posts : 112
   Posted 7/30/2008 9:01 PM (GMT -7)   
I have not posted on this site since last june. I had my colon removed july 2007. I did not have
a choice so I didn't have time to think about it at the time. I wish I had done it sooner. I got my life
back. I am drug free pain free and can do anything I want. It takes some getting use to. I am very
active. I teach aqua fitness, personal train people with rehab issues, sail, dive,dance and have an
active sex life. I feel great and I am thankful everyday that I have come through a long illness and
enjoy everyday of my life now. I know you are brave because you can't live with cronic illness and
not be. I know people who were young when they had surgery and they still fell in love, got married
had children are happy productive active people. Talk to young people who have done this. There are
some on the ostomie web site. I wish you well and if you need support just remember you can come
over to the ostomie side and we will all love and offer you encouragement. no question is to personal
just ask and someone will answer. Fruitcake

crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/31/2008 12:55 PM (GMT -7)   
thank you very much for your story. it makes the whole idea very promising. the one thing i do wonder is how do you do all those things like swim and dive with a ostomy bag? i would think that wouldn't be possible. Can it just hide underneath a one piece?
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira

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