How long between cath the bladder?

[csteele]

I'm brand new to this board! I had urethral cancer so had my urethra and bladder removed and complete hysterectomy at UCLA in August 2011. I'm 59 years old and in otherwise good health. Even though the pathology on all the parts removed during surgery came back clear (yay!) and my scans have all been negative, I am having chemotherapy, which will be over by the end of this year. I have a continent diversion with a small stoma in my naval. Here's my big problem right now. I have to drain my bladder every three hours or else I will start leakng from my stoma. The doctors tell me that the bladder with grow in size over time, but I'm wondering how long this will take? Seems like it hasn't improved any yet. I can hold about 250 cc's and then will leak. So in addition to feeling lousy from chemo, I am exhausted from no sleep. I have tried to leave a cath in overnight, but it usually gets clogged with mucus and then I leak all over. I do irrigate at least 2 times per day. So I was wondering if others have experience with how long it takes (if ever) for the bladder to hold more.

Also, I'm wondering if anyone out there have suggestions for cathing in public bathrooms. I really fumble with the cath, the lubricant, etc. Seem that I need two more hands and a clean shelf. if anyone has any practical suggestions for me in that regard, I'd love to hear them.
thanks! chris

[squid56]

Welcome to the board Chris and congrats on the good news about being negative. Now to answer your questions- first off you have not had the pouch for very long, it really takes MONTHS for it to hold a lot. Leaking is not uncommon in the beginning - really the first year is the roughest as fat as leaking. You could try increasing the intervals by waiting an extra 5-15 mins f=before you cath and see what happens. It also depends on how much you drink too as to how quickly the pouch gets full. As for the mucus that too in time will thin out and not be as much. The key is to drink lots of water this will help thin it out. Do you irrigate before you go to bed? I would try doing that before you put the foley in at night to see if that helps. What size catheter are you using? Ask your doctor if you can possibly use a larger one at night so that it not get so clogged. I have had my pouch since Nov. 1992, so mine can hold lots (over a quart) and I can go all night without cathing- trust me it does get better! I am 55 and had a hysterectomy years after having my bladder out. Hope this helps in some way, Judith

[csteele]

Judith: thanks so much for the reply! I feel better knowing that it takes longer for the bladder to hold more. I'll try to keep that in mind when I'm feeling grumpy about my small bladder I probably don't drink as much water as I should. It's kind of a catch 22, huh? the more water I drink, the more frequently I have to drain my bladder, but the more water I drink the better for the reduction of mucus! If you'd care to pass along any recommendations for cathing in a public bathroom stall, I'd be happy to hear about that as well. I guess I'm just too impatient-I want to be as normal as possible and I know it takes time and practice! It's nice to know I'm not alone and I thank you so much for your advice! Chris

[squid56]

Hi Chris- as for cathing in a public restroom (not my favorite thing!) you may want to have a little "kit" set up. Have some wipes in case the sinks are disgusting or non functioning, a sterile catheter/new unused, so that you don't have worry about cleaning beforehand and an extra baggie to put the used/dirty one in so that you can clean it out when you get home. I keep extra unopened catheters in lots of places- my backpack, purse, car, coat pockets, etc. I can go long hours between cathing, so its not as crucial for me now, but there are times when my pouch gets so full it hurts and I know I HAVE to cath immediately, so I never want to be in a situation where I do not have one. In time you will figure out what works for the best for you. Also depending on the public bathroom and the cleanliness of the toilet I will stand or sit to cath. If I stand I try to make it look like I am not a guy in there,lol I actually think it is fun to be able to stand to pee now. I can have contests with my husband writing in the snow, I know that sounds twisted, but you have to find the fun in life, right? Judith

[csteele]

Hi Judith - you are too funny! I live in sunny southern California so I don't think I'll be writing in the snow any time soon, but I did tell my husband that I can christen a bush by the side of the road now....I also prefer to stand Thank you again so much for your reply, your advise and your humor. You have no idea how alone I have felt as I don't know anyone who has the same issue as me! I just found this board by accident and there you are! Anyway, you have helped me tremendously and I now don't feel so insecure about the future. Thanks again, Chris

[squid56]

So glad I made you smile, I am around when ever you need a question answered or just need to vent. I think the next time you go to the beach find a secluded area and then you can practice writing in pee in the sand. It is really is loads of fun! hee, hee

[nowrest10]

I don't understand. If tests came back negative why are you taking Chemo? You said the bladder was removed but then indicated it was too small ? I had some of the same problems and was cathing through a stoma on my stomach. It was a constant hassle. I moved to pediatric pouches to see if that would be better. My Urologist didn't like the idea. I finally went to Mayo where they put in a Foley catheter which is changed every month. I have a leg bag and a big one at night. No more leaking and no more self caths. Only problem has been an increase in UTI's for some reason.

[csteele]

Well, I had urethral cancer, which is very rare plus it was "high" grade. So the docs want to treat this aggressively. Meaning my urethra and bladder were removed plus a hysterectomy. Then they reconstructed a bladder from a portion of my large intestine. Part of the aggressive protocol is to treat it with chemotherapy due to the high return rate of this cancer. Sooooo, I'm following all the doc's orders and doing the darn chemo. I'll be done by the end of this year so I'm really looking forward to 2012!!!

[nowrest10]

Now it makes sense to me. If you haven't already you might want to get on the American Cancer Society discussion boards. A lot of info there about the wonderful side effects of Chemo. Keep smiling!

[noaheema]

Chris -

I am sorry that I haven't visited the board in a long time and so I missed your original post.

I had my surgery in June 2007, was 59 years old, live in orange Country CA, and had the same concerns about frequency during the first year. My theory was, not only did the new "bladder" need to slowly be expanded, but that the "swelling" in the abdominal area remained (although not visually detectable). It really did take about a year for me to acknowledge that my routine had been established.

Most days I cath (1) quickly when I wake up, then 4 hours later, then 5 hours after that, then another 5 hours and again when I am going to sleep. I usually sleep 6-8 hours (and then rush to cath (no more lazing in bed, which I did love.) When ill, I have have slept longer and have produced up to 750cc's upon waking.

I would love to try writing in the snow - joked about it often at the beginning - but haven't yet gotten to the mountains here to try. Judith, thanks for assuring me that it can be done.

In public restrooms, I used to be self-conscious about how long I took and would turn one foot toward the door to look like a a one-legged WOMAN in the stall - now I just don't care anymore.

I may not remember exactly how long it took to settle into my current routine, but do remember the first few months of being frightened that I would never reach longer "dry" time.

I just realized that maybe you and I have been fumbling in public bathroom stalls next to each other here in Southern California - you never know.

To a healthy, happy New Year -Susan

[noaheema]

Oops!

Tried to make myself younger than I am - my surgery was in June 2004 - 7 years ago!

Just realized that there was something wrong with my math when I tried to reconcile being 59 in 2007! Susan

[csteele]

Hi Susan,

Thanks so much for the post and sharing your experience. It is so helpful to hear from other's in the same situation.

I'm done with the chemo, my first body scan came back negative (GOOD!) and I'm looking forward to 2012 being a better year for me. Am trying to stretch out the time between caths but have not had great success so far. I'm trying to be patient as this is all relatively new for me and just coming off chemo, I've still got lots of recovering to do.

You all have given me hope that I will get to a place where this will be a part of my life, but it won't rule my life!!!

Thanks again, Chris (Ventura County)

[squid56]

Chris, good to hear that your scans came back negative! I just celebrated 25 years without a bladder this past New Years Eve. Just keep remembering that it takes LOTS of time to get to the point of long spells between cathing. Susan, I also usually have to cath as soon as I get up, BUT I go to back to bed when I can. Nothing like lazing in bed, especially on lousy weather days. It just snowed here today so maybe I should go outside and write both of your names in the snow! Judith