leaking questions from a newbie

[luv2hike]

Hi! I am so glad that I found this site. I just had my Miami pouch (I think it’s pretty similar to the Indiana) created on 12/5/07. My surgery was performed at Dartmouth Hitchcock Medical Center in Lebanon, NH. My surgeon trained at MD Anderson.

I started catherizing on my own about 3 weeks ago. I cath through my belly button. 14” Fr. Coude Taper Tip Cath.

I am doing pretty well, basically following the schedule that Carl outlined in a previous post. But, I can’t seem to manage the leaking that seems to happen almost once a day during the day. Does anyone have any suggestions? I can’t tell by a “feeling” yet. And I don’t know how what I drink & when I drink it, relates to when I need to urinate. Sometimes I have no problem getting to 2.5 or 3 hrs. Other times it could be 1.5 hrs.

Am I just so new to it? Is it too soon to expect continence? I don’t have any problems at night (right now we are going every 4 hrs. Although last night completely missed the alarm and went 7 hrs at which time I woke up in a panic! Managed to hold 550 cc – no leaks.) The sleep deprivation can be wretched. I often take a cat nap during the day. All of this makes me remember what it was like nursing my daughters.

Does anyone have some suggestions or recollections of what it was like that first few months? I see that some of you are able to cath only 4 times a day (I know that takes time to get there). But is the leaking typical?

At the risk of sounding too nutty, I can’t tell you how reading the posts on this board have helped me. Really lifted my spirits. I was feeling pretty alone and have many questions. I’m 41 and extremely active (was…. will I be again???). I have 2 children under age 8. Right now I have a hard time envisioning myself getting out of the house to do anything remotely normal. But seeing posts from people that have had a pouch for years gives me hope and the belief that sometime I’ll be able to do something w/ out the fear of leaking (or does that always hang in the back of one’s mind?). Or traveling with a gazillion catheters.

Thanks so much!
luv2hike

[rikki]

it's way too early to worry about leaking. of course that is easy to say. i've had my indiana pouch seven years and leaked a lot in the first 3 or 4 months. i think you'll find that how active you are will cause leaking but don't worry or do less this will go away. just keep your spirits up your body will adjust and the leaking will slow down.

[rikki]

i forgot to address getting back to normal and out of the house. my first outing was at jazz festival in new orleans. my wife and i had not missed it in 12 years so i made the effort to go in my first year with my pouch. i did have a couple of issues but we just laughed about them and kept on going.

[luv2hike]

Thanks Rikki. I just get impatient and wondered how typical this all was. Things have gotten better over the last few days. I still have no idea how what I drink/when impacts when I need to go to the bathroom. In time, I guess. Or maybe not!!

So the Jazz Festival was your first outing! Wow! That's great! I keep visualizing myself being places and doing things, but haven't gone anywhere yet. Was hoping to have a better handle on the leaking and on the type of pad to use for absorbency before heading out. Right now when I leak I drop everything run to the bathroom. Somehow that doesn't seem to fit if I'm standing in line at the grocery store or helping out in my daughters class.

Just got some sample AMPatches and am hoping that will help.

luv2hike

[jpotts]

You too will return to your "new normal" before you know it! I remeber begging, praying for that day, not knowing when or if it would come. Once you get to understand your pouch better, you will see how easy it is to overcome your concerns and not let anything hold you back. I leaked back then and still do occasionally but it really comes to taking the time you ned to get to know what you are feeling and why! Do you flush with saline? I found I leaked most when I had a high amount of mucous, or, when I didn't drain well from the last time I went? Believe me, it does get less and less frequent. Since my surgery (which seems like forever ago) I have been to Vegas twice and to Chicago as well! I remember thinking I would never even get out of my bed! There are lots of folks here who care about you and will be glad to walk you through your recovery and new life experiences as you go! Might I ask you age if you don't mind? You seem young, I was 36 when I got my surgery and felt as if I was one of the youngest on the discussion board. I apologize for not answering sooner, I have not been real good about logging in lately, really busy wth work and my 2 16 year old girls (ARGH). Hang in there, there is life after pouch~
And PS, I felt the same as you after my surgery when I found this site, it is so awesome to know there are people out there like you and those that care enough to help you and offer their love. It is best when you get to the point you can laugh about it at and with those of us who share the same experience!! You'll see!

[luv2hike]

Hi - I do flush with saline 2x a day. I don't yet have a handle on if I leak more if there's more mucous or not. How much mucous is a lot? A tablespoon? I typically have mucous every time I catheterize.

Over the last few days I have tried to increase the volume of water that I drink and have reduced the juice (which I was mainly drinking for the calories). It seems that I can get to 3 hrs a little more frequently. And hopefully, since I'm so full, this is also allowing me to empty more completely - honestly, how does one know if they have drained all the way????

I did get out of the house yesterday!! And even drove! Haven't done that since the beginning of Dec.! I catheterized before I left, made it through Target, and just as we pulled into the grocery store parking lot, I felt a twinge....only about 2 - 2.5 hrs since last cath. No problem -- just did it in the car! That is kind of different - can go to the bathroom anywhere!
The whole expedition pooped me out, though. I waited in the car as my husband checked out.

I guess that I may be starting to "feel" an urge. Not consistently, but more and more. When I think of it, though, I guess this is still pretty early in the game for me (only 6 1/2 weeks since surgery - started catheterizing regularly Christmas Day).

I'm 41 (young, I think!) just this month. I lost my bladder due to a rare form of uterine cancer that had spread to my bladder. I was diagnosed in mid-Nov (surprise!). No problems (urinary-wise) otherwise. Had surgery Dec. 5th which included a radical hysterectomy, and here I am. So I went from being a healthy (so I thought), extremely active Mom to my current situation - figuring out my pouch as I go through treatment for uterine cancer. No pity party for me - at least I'm HERE!! And, assuming we can treat the cancer, it seems from other posts that a pouch doesn't limit one in what they want to do. My plan is to be back on the hiking trail by the end of July. Fingers crossed! I have a lot of weight to gain and muscle to rebuild.

My mind is ready to go.....body....well, getting there. I need to learn patience.

This forum is a lifeline as I figure out the pouch!!! And, I have to admit, I think that the whole "pouch" thing is pretty fascinating. That it can be done at all! How fortunate I am.

Luv2hike

[formercakid]

Here is some food for thought, I can only describe to you my experience with my Indiana Pouch. I am now 15+ months post surgery and my pouch is still leaking. Initially I started off ok, at the 12 month mark I was experienceing 4 to 6 leaks a day. The pouch did not produce much mucous at first, now it produces tons of mucous. My doctor said the leaks were mucous related so he started having me flush twice a day, which I continue to do. At that point my urologist instructed me to retrain the pouch. I am at the 3hr/15min mark, sometimes I can go 4 to 5 days without a leak, then all of a sudden I may get 2 leaks in a row. There is no set pattern with regard to when the leak will happen or the amount of moucous the pouch will produce. At my last doctor's visit he asked me if since Oct/07 when I started retraining the pouch has there been any slight improvment. I have to admit there has but it is like a baby step. My doctor believes that eventually the leaks will stop. He would rather wait to see if the leaks stop before he goes in and tightens it up. I think that it is a crapshoot with regard to these pouches. Some people do better than others. I have read that the ileocecal valve can have a structural defect which can cause the leaks. This is nothing that a doctor can diagnose when doing the pouch surgery. This is just a predisposed genetic reality. I am thankful that my doctor cured my bladder cancer but I have mixed opinions about these continent diversions because some people seem to do very well with them and some don't.

[blueslover]

Luvto hike,
I had my pouch put in almost a year ago. I do fairly well asnd as time has gone by my leaking has improved. I still leak sometimes and I still flush 2-3 times daily, but my doc said I will always have mucous in my pouch because it is made from bowel. I think you will just need to give it time and it should improve the oldr and more trained it gets. Squid56 is a good one to talk to about this, she has had hers out for 16 years.
good luck!

[squid56]

Did someone say my name? Sorry I have not chimed in sooner, I was in the hospital for the past two weeks. Anyway, my pouch is indeed 16 yrs old and at times it still leaks. It was discovered though that I have Irritable Bowel Syndrome in my pouch, this is highly unsual, but it is related to the numerous health problems I have, so this contributes to the reason why I leak. You are still VERY EARLY in your recovery and things should get better and better for you. It is not uncommon to have leaking issues the first year, your pouch has to mature and grow. Hang in there! Judith