Continent Diversion - Indiana pouch - questions and concerns

Melodie,

Someone recently wrote to me, with high praise for this product over US products, she said the glue is less aggressive among othet things, Molnlycke Mestopore Continent Stoma Dressing:
www.continentostomystore.com/Merchant2/merchant.mvc?Screen=PROD&Store_Code=COS&Product_Code=MOL665000

Joe,

LOVE your Halloween pixs...brightens my day . Rosebud is a demanding stoma for she believes she is the most beautiful stoma in the whole wide world...as as a result demands lots of attention...as long as I pay very close attention to her, and keep fresh dressings on her so that no mucus collects on top of her, she behaves very well. If I don't, she rebels by leaking, so I try not to ignore her.

Since you went into surgery 6 weeks ahead of me, and have more experience, I would like to ask you a few questions:

Are you having difficulty getting on any kind of schedule in regard to training the new bladder? Your notes make it sound like Herman isn't as uppity as Rosebud is.

I am finally now able to make it 4 hours during the nite so I can sleep better and that is a blessing. In the day time, I can't seem to get past 3 hours...and sometimes not even 2 hours. See example below:

Today......woke up feeling OK....had cath'd twice during the night, 300 cc's each time;
waking up, I cath'd at 8 a.m. and emptied 300 cc's.....usually I get only 200 that early; so at 11 a.m. I cath'd again and got 500 which is alot for late moring.... I usually get 300, all I had to drink was 2 cups of green tea (decaf) and 1 medium size glass of prune juice.

So I figured I would not be needing to empty until nearly 2 p.m.....but no,
at 12:30 I started cramping up but I didn't see any mucus on Rosebud and was helping my spouse with something and since I had only emptied 90 mins. earlier, I put it off....big mistake....
the cramping got worse and worse, and in fact I have never had any cramping like this before, until finally I began leaking.....much to my complete surprise, I emptied close to 700. Then I had a good cry and apologized to Rosebud.

My other question for you is...when you cath in the toilet, is it tough to do without making a mess? I am still measuring at home but when I go out and use a public restroom, I find that although I am using a 16 inch, red rubber catheter with a coude tip, in order to empty all the pockets of the bladder, I have to put all but 5 inches of that catheter into Rosebud...and since I am tall, that's quite a distance to the toilet. I find myself hunched over trying to ensure things don't get too messy. Maybe you have some tips you can share with me. Or maybe I just need a longer catheter.

Anyway, I am rather frustrated with my progress. My doctors don't seem to have any suggestions except to say, "we are optimistic that in time you will be continent" but they don't give me any time line. In fact, they haven't even given me an appointment for a follow up visit, CT scan or anything. ??? Melodie

Melodie you are a trip BJ is talking about this site that is what you are missing I was reading your post and lmao that was too much and btw how is rosebud. Take Care, Joe

BJ- Sounds like a site I ought to check out...but where is it? What am I missing? And by the way, my stoma definitly doesn't look like a navel...the doctors at the hospital where I receive treatment are trained to make it look like a "rosebud", hence, mine looks more like a rosebud than a navel. Thanks much, Melodie

Hi

I have a pouch - called in UK a Mitrofanoff. It took a while but now 16 months on I am qite happy with it. My stoma is situated about the same as Melodie's. Mine just looks like another navel. I cath 5-6 times a day - it doesn't take long. You will get lots of help and answers from this site - It was my guardian angel - helped me out through a difficult time - resoved with their advice in a matter of days. Good luck - stay positive!! BJ

Eileen,

I am the new owner of the Indiana Pouch. My surgeon did not want to put my stoma in my navel as he believes if there is any bowel problems later on, that it complicates things. I listened to him, but honestly now, wish I had pressed him to put it in my navel as I first wanted. It is just a little below my navel and over a couple of inches and I think if it were actually in the navel, it would be better protected. Years ago when I first heard about a "stoma" I remember thinking "oh, how yucky" but really it isn't all that bad to view....all the doctors and nurses have commented on how beautiful mine is, so I named her "Rosebud" and have easily accepted her as part of me. She is maybe the size of a dime and lays flat to the surface of my skin. The only concern I have with her is finding the right way to keep her protected and I have some stoma bandages coming in the mail that might be just what I need. Good for you to keep asking questions and seek information...and keep in mind that even if you have a selection made, the doctor may have to alter that plan once he gets into surgery so it's best to keep an open mind. Melodie