New member - just saying hello!

Thanks all of you - its nice to know that I am not isolated with whats going on with me.

Claire - you are right I have got an infection at the moment - it has been identified as one of the reasons I feel so low. I now have a supply of test strips and antibiotics so that I can identify and treat the infection as soon as it starts. The infections are getting further apart now.

My stoma is not in my navel but about 1 inch away from it in the right hand side of my tummy.

Yes they do use the appendix for this procedure but that was part of the difficulties I had - it wasn't big enough! - The channel has been created with a piece of bowel.

Pat - I used to drink much more than I do now - mainly because of the leaking - maybe thats part of the problem -not enough to drink?? You mentioned spasms - thats just how I tried to describe it and yes I do experience lots of mucus from time to time. I havn't been told to irrigate but have wondered if I should - maybe I will try I have the equipment to do that.

The catheters I use are disposable so I never have to reuse.

I was managing to go 4 hours for some time - hopefully by what you are all saying this maybe just a period of difficulty and it will all settle down again soon. Its good to know how long other people are going - I am sure everyone is different and I am hoping that when I am able to do what is right for myself and not have to meet targets things will be better.

I have contacted my consultant to tell him how things are for me at the moment and I will be seeing him at the beginning of July but it has been so good to be able to share my feelings with others who understand whats going on.

Thanks for getting back to me - I feel better already.

BJ

Hi and Welcome,

I think Pat has a point that 700 ml is a lot to hold, and your own body seems to be saying 4-500 is enough. Is it possible for you to get another opinion?

I know that neobladder can stretch causing 'floppy bag syndrome'. Seems to me a stretched pouch would be more prone to leaking, and that's probably the main complication of pouches.

Congratulations on your good pathology report. That's great news.

Thank you for your willingness to share and help others through your experiences...I hope they become better ones soon.

Take care,
Wendy

As I read Patricia's response, I realized how impressed I am by the helpfulness of members here.

Almost everyone goes *way* beyond the call of duty.

I'm impressed, humbled, and grateful.

Zach

Hi BJ.....I had to do a little research on the mitrofanoff procedure as we don't see it much in the states. In this procedure they use the appendix as a channel and i'm assuming you have your stoma where your navel was? The pouch somewhere in the upper abdomen? Where is the pressure you're feeling? I have the Indiana Pouch with the naval stoma and i well remember feeling like i was carring around a bowling ball in my abdomen for some time...that goes away with healing. But you've had almost a year ...how much do you drink in a day? I know i was trying to do everything the nurses told me about drinking 8 8oz of water a day...well i never did that before...and it drove my new pouch crazy..it spasmed all the time and spurted out urine continually...i actually had labor type pains ...told the doctor about it and he asked me how much i was drinking and i told him...he simply said..."Don't do that...drink what you've always drunk"...Believe it or not that solved the problem. Another cause of cramping and leaking is muucus...its wants out!!..Are you irrigating the pouch with saline solution? I found the first year i had to do it on a regular basis until my new pouch decided to become a bladder and let up on me a bit. Now i probably only irrigate every 2 weeks or if there is any unusual cramping. Another cause can be "pouchitis"....some things will just aggrevate it...i get it every time i have a CT scan...i don't think it likes the dye...but my doctor has given me an antibiotic which calms it down ..I didn't like the anti-spasmotics...and the antibiotic works for me. Are you using clean catheters...I'm not sure how it works in the UK...but my doctor did not want me to reuse catheters and wrote a prescription for however many i needed in a month. My insurance pays for 80% of it and i've never had an infection. Many on this site clean their own and theres a thread here to show you how to do it.....but i say...if you don't have to...don't.
I'm surprised they want to get you to 700cc capacity....they usually don't want you to stretch that much. I happen to have a 750cc capacity due to not being able to cath early on with the one catheter they gave me at the hospital...i hadn't learned yet to have an alternative on hand when that happens. Sometimes that pouch does have a mind of its own. I usually cath every 4 hrs during the day and it can be anywhere from 200 to 350 cc's depending on intake of fluids. At night i sleep 7 hrs and usually have about 500 to650cc's in the morning.
I'm 4 l/2 yrs now with my new bladder and even now it has periods where it just decides to leak...and i usually have on something constricting the area where the bladder is and sitting down. It still sometimes spits up muucus which is my clue to get the saline solution out.
Not sure any of this helps but hope it can be of some value to your situation. Pat

Hi
Sorry your having such a rough time.I can t really suggest anything as I have an ostomy rather than a pouch but wanted to say hello.
If your feeling unwell and having the problems you describe I would see your doctor in case you have an infection.
I am from the UK too its nice to have a few of us on here.Its a fantastic place for support and has really helped me over the last 9 months or so to come to terms with my diagnosis and treatment and just get through it.
Please shout if I can help at all.
Love Claire x

:)Hello - I have just found this forum and would like to share my experiences so far and hopefully get some answers to some of my questions.

I am a 61 year old female living in UK. I was diagnosed with bladder cancer in 1996. I had lots of Cystoscopies over a period of 10 years where the cancer was dealt with. I had 2 courses of BCG Treatment but the cancer was beginning to become invasive. This led to a radical cystectomy operation last year 2006.

My operation was to remove the bladder and removal of ovaries and uterus at the same time. I loked at the options as to whether I would have an illeal conduit (bag), neo bladder or a mitrofanoff procedure. I opted for the Mitrofanoff procedure (pouch).

In April 2006 I had the operation to remove the bladder etc. There were complications and I had a further operation in June 06. Further difficulties but in the end it was okay although recovery was taking much longer than I expected. However the news about the cancer was good - lymph nodes checked and pronounced to be clear.

I attend clinics to check on progress and am trying to meet all targets set for me. Targets are around increasing the capacity of the reservoir. My consultant would like to see the capacity at 600-700mls. I am finding this very difficult - I was able to go 4 hours between catheterization and was emptying 400-500mls. Recently over the past few weeks I have experienced serious leaking problems. I sometime have to catheterize every two hours because the leaking is so bad - once it starts it does'nt want to stop! Sometimes it just seems to seep most of the time - mainly when I am sitting working at a desk.

I have experienced several infections and thought that was possibly the reason for the leakage - but I don't think it is the only reason. I am very uncomfortable a lot of the time -aching and feeling a certain ammount of pressure around the new bladder site. It is not only when I am due to empty - sometimes its half an hour after catherizing. I have another ache which I have identified as to do with the bowel and have some medication now that helps.

As you can see I am quite muddled about what is happening to me at the moment -nothing is consistent and although I have tried I just can't seem to work it out!

Its a year tomorrow since the second surgery - I have returned to work 3 days a week. I am struggling a bit at the moment - I just want to get back to where I was before the surgeries but I feel that I am to a degree going backwards at the moment.

I hope this doesn't all sound too negative but I just want to be able to be as good as I was before.

I have read some of the information shared on your WebCafe Forum and would like to be a part of it. If I can help anyone else then I would like to.

Thanks for the opportunity

BJ