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I am really scared and don't know what to expect. I am going in for a stoma but I may come out with an ileal conduit. I am not ready for the conduit but I guess I should get ready now in case it happens.
Thanks for any support you can give or direct me to.
Is there a special place for Continent Urinary Diversion people to talk or is this the board?
Thanks
Alley
I am having a continent urinary diversion in 2 weeks.
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Continent Urinary Diversion
Hi Alley,
I had my surgery 22 months ago and can definately relate to not knowing what to expect. For me, life went back to usual, except for remembering to pack sufficient "voiding kits" for my work day, which can sometomes keep me away from home for 12 hours.
This site (for ALL Continent Diversions) has been my main information center, but I didn't discover these wonderful people until this past August. There are many people who are involved here who are a wealth of information (and inspiration). I often scan the General Discussion board just to left my spirits.
I am embarrassed to admit that I know little about the various procedures (and medical terminology when it comes to ostomies) but "lurk" on the site to offer camaraderie to others with urinary stomas.
Feel very free to consider me a part of your support system; I may not know the terminology, but am very willing to share my experiences (which mostly prompted giggling at the thoughts evoked in the process of voiding).
Susan
I had my surgery 22 months ago and can definately relate to not knowing what to expect. For me, life went back to usual, except for remembering to pack sufficient "voiding kits" for my work day, which can sometomes keep me away from home for 12 hours.
This site (for ALL Continent Diversions) has been my main information center, but I didn't discover these wonderful people until this past August. There are many people who are involved here who are a wealth of information (and inspiration). I often scan the General Discussion board just to left my spirits.
I am embarrassed to admit that I know little about the various procedures (and medical terminology when it comes to ostomies) but "lurk" on the site to offer camaraderie to others with urinary stomas.
Feel very free to consider me a part of your support system; I may not know the terminology, but am very willing to share my experiences (which mostly prompted giggling at the thoughts evoked in the process of voiding).
Susan
Just wanted to say welcome 
,Alley. Depending on what you end up with, the recovery periods will be different for each. You will heal much quicker from the ileal conduit because the surgery is not as involved to create one. You will learn how to care for your new stoma and find the best possible pouching system and how to change it. With the internal pouch not only will you be healing from the surgery, but you will have to go through the "training" period of getting your pouch to hold increasing amounts of urine, so total recovery time in a sense does take longer. It is also a more involved surgery which will mean more time in the OR. I strongly suggest you speak with the ET (ostomy nurse) who works at the hospital where you will be having the surgery as she/he will be the best resource to get info from before the surgery as they know what your surgeon usually likes his patients to do afterwards. They may also be able to give you names of patients that can speak to you either beforehand or come visit you while you are still in the hospital to answer questions from the point of view as one who has been there. They are referred to as an ostomy visitor. I credit my visitor with helping me to cope with my new plumbing and adjust to it. Do you have any specific questions that possibly one of us could answer? Squid
,Alley. Depending on what you end up with, the recovery periods will be different for each. You will heal much quicker from the ileal conduit because the surgery is not as involved to create one. You will learn how to care for your new stoma and find the best possible pouching system and how to change it. With the internal pouch not only will you be healing from the surgery, but you will have to go through the "training" period of getting your pouch to hold increasing amounts of urine, so total recovery time in a sense does take longer. It is also a more involved surgery which will mean more time in the OR. I strongly suggest you speak with the ET (ostomy nurse) who works at the hospital where you will be having the surgery as she/he will be the best resource to get info from before the surgery as they know what your surgeon usually likes his patients to do afterwards. They may also be able to give you names of patients that can speak to you either beforehand or come visit you while you are still in the hospital to answer questions from the point of view as one who has been there. They are referred to as an ostomy visitor. I credit my visitor with helping me to cope with my new plumbing and adjust to it. Do you have any specific questions that possibly one of us could answer? Squid-
Lil' Poppa
- Posts: 24
- Joined: 2006-02-12 17:24:54
Hi Alley.
3 weeks ago I was where you are - ileal conduit or internal pouch. I was also hoping for the latter. Well this is my first day back on the boards after my surgery March 24. I was happy to wake up in the recovery room with an Indiana Pouch. I was in the hospital until March 31. I will be happy to answer any questions you have about my experience prior to surgery and now during recovery. You can send me a private message if you like and I can give you my email or more or we can just correspond here on the boards. In the interim, I wish you the best and know EXACTLY how you feel.
Lil' Poppa
3 weeks ago I was where you are - ileal conduit or internal pouch. I was also hoping for the latter. Well this is my first day back on the boards after my surgery March 24. I was happy to wake up in the recovery room with an Indiana Pouch. I was in the hospital until March 31. I will be happy to answer any questions you have about my experience prior to surgery and now during recovery. You can send me a private message if you like and I can give you my email or more or we can just correspond here on the boards. In the interim, I wish you the best and know EXACTLY how you feel.
Lil' Poppa