-
New member – just saying hello!
:)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
-
41 Replies
-
It was at Hines VA in Illinois,my doctor who was doing the surgery for 8 years and still learning. It was a night mare and some how they have a nerve stitched into the stoma,but I guess I had better luck then the Cardenal of Chicago,he was in and out for 5 weeks with problems.He had his the day after me and I was out 3 weeks before him,His was done at the Univerity of Illinos,which the VA is a part of,all the doctors are out of the U of I.
-
Where on earth did you have your surgery and was it perhaps Dr. Frankenstein who operated on you…….Please name names so we can all stay faaaar faaaar away …..Pat
-
I also had a epidural but it didn’t work,only worked on the left side so I woke up in screaming agony,they put the computer on it but couldn’t get it the the right side,it took 5 days of morphine to get me down to an 8 or 9 on the pain scale,I could not eat a bite for the 13 days I was in there,I had to get home so I could eat,they wanted to keep me there an extra day or two but I checked out.When I got home I started eating,lost 50 lbs the two times I was in the hospital,down to 190 but am now at 210 and feel O.K. at this weight.
-
I’m in Florida,
I’ll try the decaf.I might be able to live with that.I got 300 out yesterday,but still had 200 in the bag,one advantage of the nerve at the top of my stoma is I have know problem finding the hole for the stoma with the bag on since it’s hard to see.Hopefully someday when the leaking slows down I’ll ask the stoma nurse to have the doctor find the nerve that gives me all the pain,It feels like I’m sticking a steel rod thru my side when I put the cath in,its fine inside just at the tip,so I’m guessing they stitched a nerve right at the top of the stoma.I was in surgery for 13 hours and 7 days in intensive care and 7 more till I got out.Before the surgery the doctors asked if they could use my appendix to support my stoma and I said sure.I had mine done at Hines in Chicago and the supervising doctor did the Cardinal the next day,I was out 3 weeks before the Cardinal because they nicked an artery and a couple other problems. -
Are you in the UK, xcv461? I loved coffee (cappuchino) too but the benefits of not having it far outweighed the problems I had with it. I gave up black coffee a while before I had my ops so don’t really want to go back to it now. There are lots of good decafs here too….BJ
-
well the lactaid is beneficial for the normal bowels….but….but…the little bowel that has become a bladder just has its own personality and will create more mucus whenever it has a mind to…be it dairy…or whatever..it will keep you guessing for a while but you’ll figure it out…..Mine also does not like the barium i have to drink for my CT scans…i don’t like it either and i’ve tried to reason with it but it has its way with me anyway! Pat
-
Have any of you ever tried Lac-taid for your dairy problems? It helps the stomach digest the lactose in dairy, and cuts down on gas, etc.
Stephany in Iowa
-
Try Peets Decaf French Roast….honest i can’t tell the difference …i order it on line as they don’t have it in the Midwest. Oh thats right you’re in the UK right……what do they have there?
Honest i go 4 hours and only get about 200 to 250cc’s out…thats about normal unless you’re drinking a gallon of water every l5 minutes! Pat -
I’ll try that again, but I do love my coffee.
-
xcv461 – Have you tried looking at diet with regard to the leaking? I cut out coffee and dairy products when I had a really bad period of bad leaking and it made things much much better – the leaking has now stopped. It really did make a huge difference to me.
-
I can never get more then 200 out of bladder so I wanted to see how much I could put in,and hold.400 was no problem, I can never feel how full it is.Just trying to get it to stop leaking so I don’t have to waer a bag.
-
I thought it was quite a lot as well! Here in the UK I was never told to use saline only when I was flushing the super p cahtheters to stop them leaking. Then I only used a small ammount.
Has anyone told you to use that ammount? It seems a bit of a drastic way to stretch the bladder…….BJ
-
Why so much saline? I was told no more than 30cc’s……Thats an alful lot….anyone else done that? Pat
-
I emptied and then put 400 saline in and got it all out so I’ll try 500 saline in a couple days,must be stretched pretty good, but always leaks.More in the bag then I get out of bladder.
-
Just emptied,I had 300 in the bag and got 200 out of the bladder after 4 hours.
Sign In to reply.
