New member - just saying hello!

Hello Pat - fullness is where the bladder is - when it is 'swollen' I am lop sided! No problem with bowels at all.
If I start to leak before the 4 hours I usually empty between 200-300. You say 250 is fairly normal - my Consultant leads me to believe 500 is more normal so I'm interested to hear what your opinion is.
When I empty its not always like an immediate cramp but after about 10 minutes of so it becomes very uncomfortable. Maybe I could try to irrigate - I did do that a few days ago after reading what you had said.
The infections don't seem to be too bad at the moment - I havn't had one for a while.
I am going to see my Consultant on 3rd July and I have a list of questions to ask him - not that he can always give me an answer. His answer to my discomfort was that I needed to expand the reservoir - which I have been unable to do due to the leaking problems.
I think maybe I have to learn to cope with these difficulties - when I read some other stories I realise how lucky I am.
I think maybe you are much further advanced in the USA with regard to this procedure. When I had my surgery the Consultant had only done 7 before - He is a very highly thought of Surgeon and I do have complete faith in him but I don't think he has any answers to some of the associated difficulties.
BJ

BJ....tummy or abdomen...is the fullness where your bladder is or your intestines? Are you regular with the bowels?...take a stool softener?
Even when you supposedly have the bowel trained to 4 hrs...it definately has a rebellious side and dependent on intake you will have to empty sometimes before that 4 hrs. Do you find that you empty a lot of fluid at those times or are they fairly normal..say around 250ccs?...Its wierd i still measure. It kind of allows me to figure out how fast my kidneys are functioning. I sometimes will cramp after cathing still...its usually mucus thats the culprit and i go back in and irrigate. I really don't know about the bloating because my pouch apparently is located so that it really doesn't show externally if it is full...it just signals me with a cramping sensation.
What is your doctors explanation for all the infections? Pat

Hi Alanna and Pat

I took notice of your comments about coffee and dairy products. I have had three days now without either and things have been better - not as much leaking. I have been managing to go up to 4 hours between emptying again and did 7 hours through the night last night with no leaks! I will give it a few more days before I say its a total sucess.

I am still having difficulty with the aching and feeling of pressure. It feels as if my tummy is about to explode sometimes and I look 5 months pregnant. Its often when I feel this pressure that I have to empty earlier than 4 hours.

Thanks for the ideas

BJ

Hi Alanna....well caffeine is definately a stimulant and the bowel would react accordingly. I drink de-caf now. But i find in my situation that dairy products is more likely to set off my production of muucus...especially icecream....but i suffer thru the hot fudge sundae ;D Pat

Hi there
Just wondering if cutting back on coffee can help with the mucus. I don't even know if you drink coffee, but since the pouch is made of bowel and when you drink coffee it is a stimulant to the bowel then it makes it more muousy and gives you more leaks. That is the #1 problem I have found in my 4 years with having the pouch. When I eliminate coffee and limit my tea then the pouch is not leaking and not as mucousy. Drinking water serves to flush out the mucous before it can cause a leak and that has helped me tremendously.

BJ....you're the second person i've found that was not told to irrigate. Its pretty standard procedure here. In the beginning the new pouch really has no idea its a bladder .. it just produces monumental amounts of muucus...I had to irrigate at least every other cath for about 3 months. You use a little syringe like a turkey baster but smaller. I was told to put in 30cc's...some people were told up to 60cc's....I'm not sure why the difference. But honestly there were a couple of times that the muucus came shooting out of my catheter like projectile vomiting. I thought it pretty amazing that those little eyes on the cath could suck that up!!...Your doctor can prescribe the saline solution for you...its not expensive. It has a short shelf life however once opened.
I do think you need to get to the source of the infections however. Thats way too many. I know with my pouch there is a feature which does not allow for back up of urine to the kidneys. ...or so they told me. I'm sorry i'm so unfamiliar with your type of diversion.
Hang in there and see if the irrigation helps..........Pat