Hi Sheree.jo. 

I have recently been diagnosed with bladder cancer. The only symptom I had was a single instance of visible blood in my urine. I had no other symptoms.  However, I am 65. 

PS: This site is for everybody who is affected by cancer and you're welcome even if you haven't had a diagnosis yet. Indeed, we all hope that those people who come here without a diagnosis eventually get the all clear. 

Hi I too am being tested, I had 2 visible shows of blood in urine, many times experienced pain when peeing, all urine dip and blood tests so far negative, am waiting in depth renal clinic tests

Thank you for responding, that's really helpful.

kind regards

Jasmin

Hi, I had my bladder removed in 2014 with a urinary diversion to replace it. It has done me fine for 7 years, though I had a complication 3 years ago when I developed an intestinal hernia which obstructed the ileal conduit. So my bowel was blocked and then my kidneys shut down. All is well now (thank you NHS!). I think the bladder reconstruction alternative may involve a permanent catheter, which I didn't want. I have to wear a small bag but I am so used to it now that it makes very little difference. 

Hello Borymas. I just read your post way back in July 21 and would like to ask you how you felt after the bladder removal and the things you had to change when you got home. I will be having my bladder out in4-6 weeks time and i will be having a stoma . I am 82 and the consultant thinks i am fit enough to get through the op but i would really like to here what you have to say about it all. Do you have to go for check ups after and how far apart. Has your life changed a lot since you had it done. I am just hoping i can cope with the stoma.

Regards from Ronnie 

Hello Ronnie

I had my cystectomy in 2014 when I was 67 and since then I have been wearing a flange which is attached to the skin around the stoma and a pouch which clips onto the flange. At night I have a night bag which clips onto the pouch and is attached to a stand. When I go out in the daytime I wear a leg bag which straps to my leg. Sounds like a lot, but I got used to it quickly. I order my supplies on prescription from Charter Healthcare. I have an annual checkup (MRI scan and consultation). All manageable. I can go out, travel (insurance is expensive!), lead a normal life, though I have to wear a loose waistband on my trousers! I really hope this helps. Let me know if you need any more info. All the best.

Hello borymas you sound full of life thankfully you will remain like that. You will be knowing how i am feeling with the news i have had wont you. It's good to be able to talk to someone that has been through it as well. Yes i have been told i will have a night bag but to be honest i will be glad of it as for 9 months i have been getting up 2-3 times a night so i will be glad of a good nights sleep. I have had one before when i had a turb so i know what to expect. The stoma will be a bag stuck to my belly. I wanted to know more about the peace of the bowl they use to make the tube to put the ureters in. Do you know anything about that ?. Did you have a lot of pain after the op and how long were you in hospital for. I drive but they say i cant for 6 week after the op is that what they told you. How come you have to have a leg bag on when you go out. The cancer nurse never mentioned that only a bag on the belly. Thanks for the info very helpful. Hope you can answer my questions and if you can remember as it is a long time ago since you had it done. Take care 

Regards from Ronnie

Hi again Ronnie

The part of the bowel which is used to make the stoma is the ileum. In my case it is the part which absorbs vitamin B12, so I have been taking sublingual B12 daily. I don't remember having much pain at all. I was in hospital for about 2 weeks.  I wasn't able to drive for several weeks, until the operation stitches had dissolved. Not everyone uses a leg bag, but I am more relaxed about going out or travelling when I have one on. I change my flange every 1.5 days, usually after a shower or a bath. I also carry a spare flange and bag when I go out, in case of a leak. You may have a different type of stoma attachment. I'd be interested to hear about it when the time comes. Good luck, and let me know how you get on. All the best, Edward (borymas)

Many thanks for getting back to me i will let you know what stoma i have when the cancer nurse tells me. Your info was just what i was wanting to know. The thing that worries me the most is the shower or bath thing. I worry about leakage as well when i am out. Like you i will get used to it i suppose. I have no choice do i. But reading your notes is very encouraging and i will keep what you say in mind. If you think of anything else  i would be most grateful

With regards from Ronnie

Showering and bathing are no problem but you will probably need to change your flange and bag afterwards as the water tends to start dissolving the adhesive on the flange. Anyway, best of luck!

Thanks for that keep um coming

Ronnie

Did you mean the ileum was made from the intestine not the bowl..

Regards Ronnie

Did you mean the ileum was made from the intestine not the bowl..

Regards Ronnie

I think the ileum is part of the small intestine.

The ileum is the small bowel, and a piece of the ileum is used to form the urostomy. Tubes which carry urine from the kidneys are sewn onto the end of this. and urine leaves through the stoma formed on the tummy.

Thanks, that's an excellent explanation!

I JUST GOOGLED IT AND IT SAID THAT IT IS TAKEN FROM THE SMALL INTESTINE TO CONNECT THE URETER TO THE OUT WALL FOR THE BELLY STOMA NOT THE BOWL

REGARDS FRO RONNIE

I've been living with one for 2.5 years now, and the ileum is the small bowel-small intestine is just another name for small bowel.  

thankyou for that take care

regards ronnie

Just wondering if they put you on any kind of vitamin  tabs after your op Minska.

From Ronnie

Hi Ronnie

No, I wasn't given anything or told to take any particular vitamins. 

Thanks

Ronnie

Hello Minska another question please. I have decided no more baths when i have had my op. So it will be showers from then on. Do you know any shower products i can use as i have read not to use perfumed soap. Hope you can help. 

Thank you from Ronnie