Wow! What a great site! I'm a 'Newbie' and am looking for some information.
I was diagnosed about 1 1/2 years ago and was responding to a combination of Prednisone & Salofalk. After Christmas this year, I could no longer afford the Salofalk (I don't have any health coverage and it was costing me $200/bottle and I was taking 8 pills a day). When I could afford it again and went back on the combination, I stopped responding to it and went back to visiting the restroom about 12-20 times a day. I'm currently on a combination of Imuran and Salofalk.
I have a few questions; as I've been reading, I hear people mentioning a 'reversal'. #1. What is that? #2. Has anyone had the iliostomy and then had the pouch surgery? #3. What is the long-term success rate of the pouch procedure?
Also, I'm 31 years old and single. #4. If I ever meet a guy, how on earth would he not be repulsed by an excrement bag attached to me should we become intimate?
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I'm not trying to be callous to people who have a bag already.... At the rate I'm going with these meds, I'm going to be sporting my own soon enough! I'm just trying to figure out how to deal with the social aspect of things to prepare just in case. #5. What about swimming? #6. What about sports?
I desperately hope that this Imuran/Salofalk combination will work for me!
To those of you who have gone through these things with patience, grace, dignity, and laughter
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... my utmost respect goes to you! Thank you to all who are willing to share their personal experiences with others of us just beginning this journey! Your input is invaluable!!
My prayers are with you!
Thank you for reading this post. I truly hope I've not offended anyone; it's not my intent. I've looked everywhere to try to find answers to these questions, hoping someone else may have already asked so I wouldn't risk offending... but alas, I found no answers....
This is a wonderful site!
Looking forward to hearing answers/replies!!!
Thanks again!...
BummedOut
May 11, 2009 1:01 pm
lottagelady
May 11, 2009 9:55 pm
Hi, as regards the 'intimate' thing, try the 'romance originals' at www.whiterosecollection.com, they completely cover the bag, hold it in place, and my new fella finds them quite kinky! Good luck with it all, Rachel xx
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Past Member
May 11, 2009 11:20 pm
"
#2. Has anyone had the iliostomy and then had the pouch surgery? "
Yes, I have tried the reversal twice, both with lousy results. But, everyone is different! Many people have successful reversals.
One day, before the first reversal, my surgeon said something that really sticks with me:
"There is a web site online for people with J-pouches. Roam around the site and get an idea of what it's like. But remember that most of what you will see are posts complaining about the J-pouch because people with successful ones are busy living their lives"
#2. Has anyone had the iliostomy and then had the pouch surgery? "
Yes, I have tried the reversal twice, both with lousy results. But, everyone is different! Many people have successful reversals.
One day, before the first reversal, my surgeon said something that really sticks with me:
"There is a web site online for people with J-pouches. Roam around the site and get an idea of what it's like. But remember that most of what you will see are posts complaining about the J-pouch because people with successful ones are busy living their lives"
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Past Member
May 13, 2009 4:58 pm
Im in between the stages of getting my ileostomy taken down and reversed iv had my 2nd operation about 7 months ago to fit my j-pouch and i must say i was very sick just before i had my ileostomy about 2 years ago so i no how you feel on the medication if i could do it all again i would go for the operation alot faster the quality of life is 100% better. Id also like to mention i hav a wonderful woman in my life at the moment and if theres hope for me theres hope for you too,
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you jus hav to keep searching for the right person. Oh and i play sports all the time theres really nothing you cant do with an ileostomy.
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you jus hav to keep searching for the right person. Oh and i play sports all the time theres really nothing you cant do with an ileostomy.
chaceme5961
May 20, 2009 12:59 am
Hi Sweety,
As a response to the intimacy part, i have had my colostomy for 5 years now n i use teddies with the snaps at the crotch, most ppl feel if they dont see it its not really a problem, as for the breasts well pick them over the bra of the teddy(lol) and if your with a caring understanding guy there shouldnt be a problem n if it repulses him then he aint worth it.. good luck hon i hope i helped
As a response to the intimacy part, i have had my colostomy for 5 years now n i use teddies with the snaps at the crotch, most ppl feel if they dont see it its not really a problem, as for the breasts well pick them over the bra of the teddy(lol) and if your with a caring understanding guy there shouldnt be a problem n if it repulses him then he aint worth it.. good luck hon i hope i helped
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
MrBillYTO
Jun 01, 2009 4:49 pm
Hey Bummedout,
I can't answer your questions regarding the reversal but I just wanted to comment on question regarding finding a mate.
In my opinion, it is by no means easy to find someone who is understanding and patient and OK with a bag hanging off your body. You are very lucky when you do but that would be true in any circumstance. I was in a relationship when I had my operation and it ended less than a year later after 8 years of being together. That's not to say it was the bag was only reason but it was definitely one of the top 5. I can say this now...2 years after the relationship ended...I am better off and happier without that person. I am who I am and if someone wants to be close to me then they just have to accept it. I have meet a few people who have accepted it but it didn't work out for other reasons and that's OK too. I am patient and will wait until I find the right person. Like others have posted, there are ways to disguise/hide it during intimacy but the other person knows it's there and will accept it or not. The bottom line for me at least is I wouldn't/couldn't go back to feeling the way I did pre-operation. The pain and discomfort were worse than being without someone right now.
Best of luck,
Bill
I can't answer your questions regarding the reversal but I just wanted to comment on question regarding finding a mate.
In my opinion, it is by no means easy to find someone who is understanding and patient and OK with a bag hanging off your body. You are very lucky when you do but that would be true in any circumstance. I was in a relationship when I had my operation and it ended less than a year later after 8 years of being together. That's not to say it was the bag was only reason but it was definitely one of the top 5. I can say this now...2 years after the relationship ended...I am better off and happier without that person. I am who I am and if someone wants to be close to me then they just have to accept it. I have meet a few people who have accepted it but it didn't work out for other reasons and that's OK too. I am patient and will wait until I find the right person. Like others have posted, there are ways to disguise/hide it during intimacy but the other person knows it's there and will accept it or not. The bottom line for me at least is I wouldn't/couldn't go back to feeling the way I did pre-operation. The pain and discomfort were worse than being without someone right now.
Best of luck,
Bill