Indiana Pouch issues / questions / concerns

[april_36]

Hello All

I'll try not to be repetitive with my questions, as I've read many of your posts already...
That said--

My name is April. I'll be 37 in August.
In October of last year (2006) I had a complete hysterectomy & had my bladder removed, as well--(was diagnosed w/ a stage 4a sarcoma, but the margins were clear after surgery, so no chemo or radiation) *snoopy dance*

My gyno-oncologist gave me a couple of options. At the time, I was very unfamiliar with any of this--everything happened very quickly after diagnosis.

Anyway...He told me that same day that if I didn't have the surgery that I likely wouldn't survive for more than a few months. Told me about how things could workout or not, and told me about the Indiana Pouch, which I chose.

Unfortunately, I still can't go without a leg bag for more than a few hours, and definitely not away from home, because of leaking. (Nothing like turning into a human sprinkler system at any given moment.)

I irrigate a few times a day w/saline, use red rubber 14fr catheters, which I clean with hot water & rubbing alcohol. I've tried various anti-spasmodics, the best being Urimar T, which isn't currently available, though I'm not certain as to why. Right about the time things were seeming to calm down, the manufacturer stopped producing the medicine, and I've yet to find a perfect alternative.

I have found that while drinking coffee and/or alcohol tends to flush out the pouch very well (both are diuretics), their aftermath is occassionally not worth the bother.

Also, because there is still a lot of goo present, even with irrigation, drainage is very slow at times, presenting a time problem when I'm at work. I don't have 15 minutes to linger in the bathroom--another reason I'm still wearing a leg bag, and cutting panty liners to put under the catheter, taping both down, just beneath the stoma, so if there is leakage, I can buy myself some time. This, along with a large gauze pad taped over the stoma opening helps, as do extra panty liners all along the inside front of my underwear.

Suddenly, there is way too much maintenance.

It works, of course, but I can't help thinking there must be a better way of handling all this, and I'm hoping it will eventually get better.

I've already survived cancer twice before this--was born with it (retinoblastoma, cancer of the eye--was a St. Jude baby in '71.) Apparently, the radiation treatments from my original cancer are likely what caused my bladder cancer all these years later, according to my doctor.

So...any advice or thoughts any of you have would be great. Seems that, as a woman, I'm in an odd minority for surviving this, so there's not a lot of info available on post op care. None that is easily found, at least.

kindest regards & happy peein' !

~A

[Lynne]

April,
I'm hoping that some of our "resident expert" Indiana Pouchers will respond to you soon.

[april_36]

Thanks ~ I hope so, too.

[squid56]

Hi April
My Indiana pouch is going on 16 years old. It takes a good year for things to settle down. I had my bladder out due to a disease called Interstitial Cystitis- it was taken when I was 30, so it has been 21 years since I have had a bladder. I initially had the ileal conduit, then switched over to the pouch. I still leak too, but that is because they discovered I have IBS in my pouch, so there is nothing other than taking antispasmodics that I can do, unless I were to go back to wearing an external pouch. I use a 14F coude catheter by Mentor- it is clear plastic and very stiff, which is what I need. As for keeping it covered, I use 2x2" gauze pads and tape or sometimes I use AMPatches. They work very well, you may want to try them. The company is called Austin Medical and if you call them they will ask you all sorts of questions and send you out some free samples to try. The phone number is 1-800-223-9310. Right now I use dicyclomine as an antispasmodic and it works fairly well. It is a prescription. The only other suggestion I have is to drink LOTS of water, this will help to thin out the mucus and also as time goes on you will not produce as much. Congrats on beating cancer twice! Judith

[april_36]

hey there, Judith

Thanks for the info. Anything anyone can offer from experience is proving more accurate & helpful than hypothetical textbook predictions.

You should try Urimar-T if they ever produce it again. It's also a prescription, but very well worth it. I could have gone without the attachments if I could've kept using it. Hopefully I'll be able to do it anyway.

take care, then (and nice to meet you.)

~A

[Lynne]

Judith,
Did you get my PM ???

[blueslover]

april,
I too lost my bladder to Interstitial Cystitis, like Judith. I had mine removed in Feb. Of this year. It is hard to get used to not peeing normally to be sure. One thing that still happens even though my new bladder is fairly well trained is leaking episodes. sometimes they are big or little. I wear a poise pad. It isn't too big it is just the right size. as for a thick slow flow LOts & Lots of water, Like Judith said. Tha more water the better your urine flow is. I drink at least a gallon a day. coffee and alcohol are okay in small quanities but since they are dieuretics they can lead to will dehydration. Another good reason for more water. I don't know if this helps any.
Congrats on beating Cancer!
Blessings & Hugs,
Eva

[formercakid]

April,

I have had my Indiana pouch since 10/05/06. It still leaks and I irrigate twice a day. I have no problem whatsoever irrigating, the biggest problem is the leaking. The leaks range in type from very small to significant amount of urine, many times they take the form of a mucous discharge. I use a cut down Always pad secured over the stoma with paper tape. The majority of the time the pad catches the leak. I have read that the leaks tend to stop after one year which I am approaching but I quess I am a bit skeptical. Initially, my doctor did not have me irrigating. He advised me to irrigate when the leak incidents increased. There are days where I will not have a leak and I can go 4 to 4 1/2 hours between voiding and then again there are days where I might have as many as 3 leaks. My pouch seems to go through cycles where it will produce a ton of mucous and even irrigating does not help. I do drink a significant amount of water. One thing is for sure in my case, physical activity, especially heavy lifting seems to effect the pouch leaking. On a number of ocassions the day after I have done some heavy lifting (anything over 30 lbs.) I have experienced multiple leaks. I have kept a voiding record since my surgery, logging each time I void and also the time and the nature of a leak if I have one.

[Carl W]

I've found that my leaking occurs when I've gone to long between voiding. My IP was installed 11/06. Do you have an uncomfortable sensation, like you might have some gas, before a leaking episode? That's my sign that I have to void. If I can't void then, for some reason, I begin to have kidney pain. That's a sign that I don't have an option, but to race to void. I may or may not leak, even at that point, but backed up urine in the kidneys is absolutely not good for you!

[formercakid]

I recently went for my scheduled Doctor's vist and he is having me flush 2 times daily, 3 syringes full of 60CC at a flushing session. He says the leaks are caused by mucous buildup in the valve. He says I also have to stretch my pouch more. The flushing has helped quite a bit. I still have leaks but they are deminishing. I am up to about 4.5 hours between voiding and at night have gone as long as 6 to 8 hours. I am aware of the full sensation and always void when I feel very full.

[Carl W]

That's great news. Glad it's slowing down. It will eventually quit, I'm sure. Stick with it. It's better than the alternative, by a long shot.

When the option of the bag was shown to me, I just couldn't handle it. I did a lot of very fast looking around for alternatives, and am very happy I found the IP.