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Questions about Indy Pouch in women
After having BC for 9 1/2 years, my doctor has recommended RC. I haven’t talked with him in length yet (just a phone call with the bad biopsy results), but I’m trying to gather info on my decision on what kind of diversion. Past posts have been very helpful but I can’t sit and read all day. (Surgery will be at Cleveland Clinic, Dr. Campbell, who Patricia recommended).
I’m adressing this just to women (sorry guys) because, well, we’re different! I’m definetly leaning towards Indy pouch. Questions
1. Is it really continent – no leaking?
2. How do you adjust to the lack of continuous sleep? Does it continue to be hard to get up and cath?
3. How long does cathing take – how many minutes?
4. Am I going to have trouble finding local doctors who can help with issues I have or will I always need to go back to Cleveland (I live near Erie)?
5. Do you have to change what you wear – I mean, do you need to avoid waistlines that press on stoma?
6. Should I think more about neobladder or ileal conduit? I’m 56, in otherwise great health.
7. How much weight will I lose? (I don’t want ot lose weight – I’m already just 108 lbs and having trouble eating because of nerves.)I have tons more questions and I’m kind of scared. I’d love to talk to someone who is willing to answer more questions that come up.
Thanks. Sandie
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12 Replies
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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.
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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
http://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
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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.
Lynda3 years UTIs
Indiana Pouch – July 2010
Pulmonary Met. – May 2011
Chemo started June 2011
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?
Thanks Pat! I guesss it’s time to suck it up and get it done. I was starting to wonder if the bag at night was counterproductive and you just confirmed it for me.
Lynda
Lynda3 years UTIs
Indiana Pouch – July 2010
Pulmonary Met. – May 2011
Chemo started June 2011Linda,
Unfortunately if you don’t train it it will continue to play tricks on you. Sleep deprivation is for a short while only while you train it…hang in there and don’t let it run your life…you take charge.
For one week go every 2 hours (ok you’re already there), second week go every 3 hrs, third week try for 4 hrs…then stop your fluids around dinner time and get that Indiana to start going thru the night with you. It doesn’t happen right away. I got it up to 6 hrs in about 4 months and by a year i was sleeping 8 to 9 hrs without leakage or interuption of sleep. Using a Foley is just asking for a UTI…it will happen eventually. Just be patient…cat nap during the day if you can…and stick with the program. Once it decides it actually likes being a bladder it will behave with a few exceptions…mine does not like Barium from CT scans one bit..dairy makes more mucus, and now that i’m on blood thinner (whoopee) it wants to get it out of there as its excreted by the kidneys so i do have to get up at about 6 hrs at night but still behaving during the day.
Hang in there..you’ll get it done.
pat
Hi Everyone! I am new to this site. I was Dx with bladder cancer May 24, 2010 (my birthday), and had surgery on July 15, 2010 with a complete bladder removal with Indiana pouch. At first I was disappointed to not get a neo-bladder, but the urethra was compromised by cancer. Now I’m glad to have the Indy and cathing takes me about 5 minutes.
I have lite leaking most days and use a foley cath. and bag at night. You do not want to deal with me sleep deprived – I halucinate.) I did have one night(since surgery) that I did not use a bag and got up twice and seemed to do OK, but the next night was a disaster. During the day I can go from 2-4 hours between bathroom breaks. My dr. never gave me any instructions on training so I’ve learned a lot from “lurking” on sites like this one. I have also never met anyone (face to face) that has an Indy.
I wear all the same clothes as before, and I have lost a little weight so that makes them looser and more comfortable. I also use a pad and micropore(3M)tape over my stoma (at navel).
I have heard great things about Cleveland Clinic and it was my second choice for care (Grand Rapids MI is about 6 hrs. away). I was very lucky to find a top dr. in GR Dr. Brian Lane (great surgeon) and I can’t really fault him for not knowing about training since he doesn’t have one.
Sandie – I think that the Indy pouch is your best bet. Talk to your Dr. about the success rate for neo-bladder is women (have heard it’s not too successful, but that doesn’t mean it won’t work for you) Also please forgive me for Hijacking your post, but if anyone has any advice for me on getting thru the night without the bag, I’d be very grateful.
There are other sites on the web for bladder cancer, but I think this one is the best.
Lynda3 years UTIs
Indiana Pouch – July 2010
Pulmonary Met. – May 2011
Chemo started June 2011
Thank you so much for your responses! You have no idea how helpful this is to me (and others, too, who read it).
Erie is 90 miles east of Cleveland so it takes me 1 hr 45 min to get to Cleveland Clinic. I feel very comfortable about having the surgery there. I’ve had 3 biopsies done there so I’m familiar with it. Wish I didn’t need this done at all but it’s time.
I’m trying to think where Erie is?
Anyway i’ve had mine for 8 yrs and at first you must make friends with it and train it…..its a little confused as it still has the memory of a bowel but it will come around. It will produce a lot of mucus in the first 6 months and some of that is related to certain foods you eat…..mine was dairy…it might be different for you. But it takes about 4 weeks of sleep deprivation to get it to 4hrs before emptying…and gradually you train it to go longer in the evening..5 to 6 and i can now go 8 hrs at night. I do not drink much at night though either. Drink what you’ve always drunk…the stoma nurses will try to tell you to drink 8 8oz of water plus……much more than i had ever drunk in my life…doc said..”stop doing that”..drink when you’re thirsty. Problem solved.
I do not leak but i wear a bandaid over my stoma now. In the beginning i used a gauze pad and paper tape…i’m allergic to latex. it mostly spit mucus.
I wear the same clothes i always have. I have a navel stoma and most of my pants come below the stoma. Cathing takes about 4 minutes maybe but i’m a pro…in and out..a little swishing to make sure i’ve hit all the pockets..wipe off the stoma and pat dry it and put on a bandaid. I also never reuse catheters. And i’ve never had a UTI. Campbell will write you a script for 200 caths, surgi-lube and sterile saline solution.
It can act up once in a while…it does not like barium one bit..so after a CT scan it plays games with me but doesn’t last very long…couple of days.
Much better than a neo that you have to empty every 2 l/2 hrs or so and talk about leakage with a female?????? If you’re going to leak much better for it to look like you spilled something on your shirt than wet your pants.
Other good places to go for the Indiana are U. of Penn and Dr. Malkowitz and Indiana University..Dr. Koch or Dr. Bihrle.
pat
Wow, Sandie, that is a lot of questions. I understand because I got my Indie pouch 16 years ago. I can’t answer how it will be for you, but I can share some answers based on my own experience.
1. I very rarely have any leaking. If I am concerned it may happen…I simply wear half of a Carefree panty liner in my panties.
2. Once you get the bladder trained, the sleeping issue isn’t so much of a problem. Part of that will be determined on how much you drink in the evenings. Usually, where I am now, I only get up once during the night.
3. How long it takes depends on how full the bladder is, and the size of the catheter. It does take a bit longer, but not that much.
4. You may wish to check with the doctor you are seeing now for a recommendation. I am lucky, because there are doctor’s here that I can see.
5. If it is something I am going to wear to work all day, I avoid things that have strong elastic waist. I wear regular waist bands…much more comfortable for me than elastized. Other than that, I wear what I want.
6. I am glad I have the Indie pouch. Would not go back and change.
7. I didn’t lose any weight, for a while, I gained. Then, I finally got back to normal.
I hope this helps. As I said, I can only reply based on my own experience.
Sylvia
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