Questions about Indy Pouch in women

Sandie..i had my surgery at The Cleveland Clinic..they have a great bunch of stoma nurses there and they will train you well and even arrange for a home nurse when you are sent home to make sure you are doing it all correctly. I included the letter from Medicare as it explains what the doctor needs to include to your Insurance company and as i said most insurance companies will follow Medicare's policys.
pat

Surgery will be at Cleveland Clinic. I saved a copy of that letter about the catheters, but I am not on Medicare yet (only 56). I have Highmark and so far it's been good insurance, covered everything, I hope it will cover catheters, I do not want to reuse.

I remember coming home with a foley after one of my bladder biopsies (a bladder mapping, the doctor called it). They gave me all these instructions about how to flush it etc when I was so incredibly groggy and out of it. It plugged up on the 2 hour ride home - no urine at all coming out. I get home, can't remember what the heck to do, try to flush it, start feeling sick, threw up (and kept throwing up the rest of the day). Ugh. I am hoping not to repeat this experience!

Thank you, thank you for everything you all wrote.

Sandie,
Every institution is a bit different in how they handle things so one persons experience might not be yours. I was out in 5 days and still had 2 J tubes in my belly and a supra-pubic that i had to learn to clean and flush but they gave me extra tubing and bags including a leg bag and i only used the larger bag at night. Once the intestines heal and everything out which is maybe at 10 days after your home..(that varies also) you'll learn to cath. About catheters...Medicare has allowed 200 a month of disposable catheters...what Medicare allows so do reputable insurance companies. You need a letter from your doctor stating what you have and how many catheters you will be using..It will also cover surgi-lube, and sterile saline solution which you will use until mucus starts thinning out and that is a script. The letters to insurance companies i will find somewhere in Articles of Interest and post later..just copy it and give to your doctor. Do not re-use if you don't have to. I'm 8 yrs out and never re-used and never had a UTI.
While in the hospital chew gum...little trick they just discovered that gets the bowels mobile..honest.
You'll be tired and probably not have much of an appetite. But eat things like eggs with protein...meat hard to digest...a banana a day...baked potatos...ice cream sundaes....
You'll also get a script or should for a stool softener but you can buy Colace over the counter..thats just a smart thing to do. Don't try to fiber it up too much...your intestines won't know what to do with it and will torture you. Your body will tell you when and what to eat..listen to it.
It takes about 6 weeks for physical energy to somewhat return and then when you start training the pouch you will get quite sleep deprived but its temporary..honest. The effort will be worth it in the long run.
A little hint...hospital will have a certain kind of cath they like........but contact someone like Hollister on the net and ask for some samples of 14"french 16long disposable caths. My second cath is a very soft clear Mentor which will go in when the other one decides to be stubborn. I learned that one the hard way after one week cathing and could not for the life of me get the cath in and off to the ER we went with my mayo jar and caths..just as we hit the parking lot the cath went in...750cc's..way too much...so learned my lesson the hard way.
We'll give you some more tricks as you are learning and cursing your decision which we all do until it becomes the most natural way of doing things.

Where are you having your surgery by the way?
pat
P.S. heres the link for the letter to the doctor on catheters
just copy and paste
www.bladdercancersupport.org/su/forum/16-american-bladder-cancer-society-news-and-updates/21837-a-letter-to-mds-regarding-catheters

Some excellent advice and observations. Its interesting how everyone has their own experiences and journey....

I remember getting home from the hospital with all this 'stuff' - and my husband and I were overwhelmed not knowing how it was all going to come together and work for us. Trust me - you'll find your way and adjust as time goes on.

As far as food - after surgery try to stay away from foods such as popcorn or nuts. These are foods that don't digest and sometimes can create issues in the intestines that are still healing. (doctor told me these 2 foods are the most common culprits in creating issues)

The other concern (other then Pat's comment on possible infection)I would have with a foley overnight is that it could get clogged with mucous which could back things up. I had this issue when I first got home from the hospital. My husband, bless his heart - used to get up in the middle of the night to check it.

I felt so weak after surgery that for the first time I actually did not worry about housework, bills, anything. My husband carried the whole thing - he cooked, cleaned, shopped, nursed me and still knew when to put all that aside and just hold me.

Accept the love and help of all who offer. There will be time for you to thank them later.

I lost weight after the surgery (about 20 lbs) but quickly gained those back plus some. I still think that the hysterectomy influenced the weight gain. (I didn't eat that much chocolate!)

Before the surgery, also find out about the pain management after surgery. I had an epideral and it worked great.

Let us know what other questions you might have. You'll will be here helping others before you know it!

Gracie

Eat what you want and whatever sounds good to you.

When the nurses want to get you up and walking and you are hurting and just want to rest, get up anyway and walk! It will make a huge difference in your recovery and getting your bowels working again.

Find the most economical source for supplies you can. This is for life and you want a place to get what you need without any hassle from your insurance company. (FYI - my local medical supply has a 16 French red rubber catheter for $2.00 each!!)

Keep a notebook of dr. visits and what is going on. It will come in handy when you "forget" or "remember it wrong". And if you sleep thru any family/friends visits you'll know who came to see you and when. Also helps to keep track of indy training (went at 1 pm next visit to the bathroom is at 3 pm...).

Get some comfortable clothes that are loose and not too tight at the stoma level. Easy to put on is a plus too. We also installed a handheld shower so I could use a shower chair and not get completely exhausted just washing my hair.

Speaking of hair, you will get massive amounts of drugs in the hospital and some of that will make your hair fall out, this will be temporary, Get a hair cut just before your surgery as it may be a while before you are comfortable in a chair leaning back.

You will probably go home with a catheter in place to be taken out at a later date by your doctor. I had my catheter hooked to a bag, and put the bag in one of those pink emesis basins from the hospital (hard to carry and heavy when the bag got full), so that whole mess went into a tote bag with handles. Much easier to carry and less obtrusive sitting on the floor next to my recliner.

It's great the your sister is coming to help, you will need it. At first you will be grateful for any and all help, and then it will be slightly frustrating when things in your house aren't getting done exactly as you would do them but you keep quiet because you realize they are helping and your are blessed to have them around. I knew that I was getting better when my husband and mom started doing laundry in "mixed loads" instead of sorted into whites, darks, towels, etc. and I actually cared and got a little (OK, a lot) miffed and started doing things for myself. Before you know it your back on your feet and it is a great day!!

Thanks for letting me tell you what I wish I had known. I'll be thinking of you and praying for a successful and "routine" surgery and hassle free recovery. The ladies and gentlemen on this site are a wealth of informtion, we're lucky to have someone who has gone before us to look to for help.

Great advice on training. I will remember this.
I just found out my surgery will be Feb. 11. I met with the doctor yesterday and we did decide on the Indiana pouch. Would anyone like to share tips for the first weeks home from the hospital? This is something that I am especially anxious about. I know I need to get walking a little. I am having my sister come and help me (my husband will be around as well). Advice about food or anything else that you wish you had known about your recovery?