I am researching surgery and for the most part have decided to do the Jpouch procedure. I am a little worried about a few minor things would be greatful if somone could help with some answers.
1. I am worried about having an ostomy and smelling bad. I am a nurse and I have had some patients that generally have a "Smell" when they had a colostomy. I know this is silly but I am concerned about it. Does anyone have any suggestions and or comments?
2. After surgery #2 when you actually start using the JPouch will I be incontinent of stool?
Reply posted for mtmcdaid.
Hi Sara,
My temp ileo never smelled unless I was in the bathroom emptying my bag and that wasn't that bad either. May people are worried about smell, but that isn't something to be concerned with on the whole. Also, I did not have any jpouch incontinence after I started using my jpouch - I've had full control and never any accidents.
Below I put a link to my blog where I show photos and talk about my 2 step surgery procuedure -
http://ucstory.wordpress.com/surgery-3-jpouch-or-takedown-surgery/
Mark
Reply posted for sara1124.
HI, I had my J-pouch surgery last year October 2007...My pouch didn't smell only when i changed it...you will find that certain foods will give you a smell..you will also find out that certain liquids will clean out your pouch too..mine was milk..it cleaned it right out...
It is very true, please get a good ostomy nurse..one that knows what she is doing is sooo important! when i went back for my check-up with the ostomy nurse, she said you have the wrong system on and gave me the right one for me...
After my second surgery..you will have leakage...it depends on your body...those muscles back there haven't been used for 10 weeks while you have your iliostomy so except some leakage..they told me to do my kiegal exercises..which do help but over time, the leakage stops...i am a year out and i hardly wear a pad anymore...you will also find what foods will work for you and not give you leakage to what foods that you can tolerate! also remember your J-pouch grows three times its size as the years go on...I can hold more stool for longer periods of time before going to the bathroom..normal for J-pouch users is 6-7 times a day...I have been through it! I am doing wonferful!
I am married..my husband put a towel over the pouch before we made love..i know it is hard being single...i would wait after your second surgery if you feel that guys will get turned off by the whole bag thing..but guess what...second surgery, you will feel normal again!
If you have any more questions, i will be happy to answer them...
Amy
Reply posted for sara1124.
Sara,
I don't think there is anything trivial about it! I guess I was lucky in that respect that I was already married when I was diagnosed.
In terms of having the ostomy between the surgery, there are definately "tricks of the trade" that I had to learn the hard way. As you are reasearching, be sure to spend time looking into ostomy nurses. Since they are your primary medical support post surgery, you really want to find someone who has a lot of experience and is willing to be creative when it comes to finding solutions that work for you.
Good luck. If you have any other questions, I would be happy to tell you what I've learned.
-Mike
Reply posted for mtmcdaid.
Thank you so much for your response and suggestion. I know this probably sounds so trivial but I am 27 and single and its so hard to date now, well vertually impossible! I hate leaving the house b/c the worry causes so much anxiety its just not worth it. I am hoping after surgery I can live a "normal" life!
Reply posted for sara1124.
Sara,
I have a strait ileostomy so I cant comment on the J-pouch but if the ileostomy/colostomy bag is applied properly (which is not difficult to do), there is absolutely ZERO smell. They even make drops that you can add to the bag so that there is practically zero smell when you empty it. My family really appreciates those!
-Mike
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