What do I need?

Hey again Flyer,

Getting the bowels up to speed was the hardest part for me. One thing that helped was using some of the heavy duty creams for infant diaper rash. And have you picked up a pack of adult potty wipes? Comfort helps. For eats, soup, yogurt, light pasta dishes, and using Ensure to fill in the gaps nutritionally helped keeping things flowing. Be careful of really pulpy fruit like oranges. As Mike said, the Senekot works good, and with your doctors blessings Milk of Magnesia works if you start getting too plugged up. My downfall was Thanks Giving less than a month after surgery… I almost blew it there.

For the bed issues, that’s a tough one since its summer time. The disposable bed pads are cheap and the washable ones are pretty reasonable. Keep the mind set its only temporary.

With the neo you shouldn’t need to cath unless there are problems or some short term issues. Watching your diet will help there for keeping the mucus in check, and if there is a problem, there are plenty of threads here for that and your doctor.

Tough call on ordering by the case. I would start out with a couple of packs of each brand for the diapers and pads and figure out which ones work the best. As a note on the pads, wear it high in the undies! Clear up to the elastic, any lower they start rolling down as you move around and that damn tape starts grabbing your stuff!

All this post surgery stuff is a test of patients. But once the tummy settles down and the bladder starts getting close to the target size it sets in that you’ve done it!

Bill

Flyer,

If those are the biggest problems, you are doing great! Congratulations!!!

Even those on top of the sheets pads will trap heat. That was an issue for me as well.

In the beginning, at night, I would put one of the pads inside the Depends. Seemed I would go an awful lot at night.

You want to be sure to set an alarm clock in accordance with your neobladder stretching schedule. If you do that, use the pad inside the Depends (or generic or whatever brand) then you may be able to get by without anything else on the bed.

It's probably a good idea to do the sheet thing and then put a washable mattress cover (thick enough to keep the heat reflection of the protective sheet from being a problem) and then your sheets. That way, you don't get the heat (that was more uncomfortable than anything else at the time for me) but you protect the mattress, just in case.

If you haven't already tried it, get Senekot or something similar. It's a stool softener. Start keeping track of what you eat or drink for a while and see if you can link it to one or the other particular bowel issue. There will be issues for a while (couple months or more). Intestines are pissed at you and will take their revenge for a while. Some people develop sensitivities to certain foods or dairy products after the surgery. Don't why, but it seems to be the case.

It can be tough doing those kegel exercises if you've got diarrhea! Not a pretty picture.

When you are at the store, please pick up a big box (largest you can find) of patience! It is easy to get frustrated (and pretty darn normal) after getting the catheter out with regard to how long it can take to start getting any control. A few get really lucky and others takes a long a time. I think the average is about 4 weeks or so for reasonable control and up to a couple/few months before you are confident enough to not need the pads anymore during the day.

Glad the surgery went well for you and I wish you the very best in your recovery post neobladder surgery.

Mike

Bill,
Thanks for the information, that's what I needed. I still find it somewhat overwhelming and am reluctant to order a case of anything I've never tried. I sweat enough at night without the plastic sheets so I will probably used the top pads. Any opinion on disposable vs washable?

I have to get some more saline so I'll checkout Walgreens' selection. Hopefully the hospital will give me some samples for the 2-ho0ur trip home.

I was told not to start the exercises until the catheter was removed. I tried a few while reading the article and didn't notice any pain in the few I did.

I'm looking forward to learning how to pee again, the catheter is really getting to be a pain. But I'm not looking forward to self catheterizing.

Now, if I could just break the constipation/diarrhea cycle, I would feel more human. Everybody recommends drinking lots of water but when I do, I just fill my collection bag faster. That and the nausea are the biggest problem in my recovery.
Thanks to all.
Flyer

Hey Flyer,

If you want to shop local, the walking is good for you, try Walmart and Walgreens. Huge selection usually. Don’t go overboard yet with ordering, things might start working pretty fast. The plastic sheets work really good unless you sweat allot. Another thing to maybe try if you don’t like the under sheet, changing and washing sheets everyday sucked, is to try some of the pads that go on top. Some are disposable and some are washable.

For the first weeks, adult pull ups for night time and pads for the day. As time goes on the man pads for day time can be shifted to the very thin kind and become unnoticeable. You’ll feel like a million dollars the first few days of staying dry all day!

Start your kegels now! I was told to start when I was still in the hospital. Below is a handout that gets pass around here on the site just incase the hospitals wasn’t so good.

Bill

PS, The links are for visuals only on the things you’ll need.

For the bed

Briefs

Pads

Kegels

Thanks GKLINE for the information. I've looked at a few web sites and will put together an order. I live in a rather large city (Louisville) but there doesn't seem to be much available locally.
As for the sense or humor, it is still strong, otherwise I would have drowned in tears months ago.
Flyer

Flyer

Your shopping list needs to include:

A fitted rubber or plastic sheet for your bed... Put this under the regular sheet to save your mattress.

The best adult incontinence products are fantastic. Full Shorts for a while and then pads as you gain control.

A Huge sense of self humor. This is NOT the way things will stay..... But for a While, you will be an unchained fire hose.
Keep doing those keegle exercises. This will train the muscles to stop the flow (it will take time though)


I guess the best thing is the fact that you have saved your own life. This next step will teach you to laugh at youself and realize that life is always unplanned.

Good Luck
George