Forum Replies Created
-
Posts
-
Hi Sophie’s Mom.
I was 45 when I was officially diagnosed. Never saw blood in my urine but was found microscopically on a routine u/a/ I had urinary urgency and frequency. Probably why I did not receive a prompt diagnosis because of those symptoms. I was prescribed pills for my “overactive bladder” – yeah right! Sometimes you have to be your own advocate. Well, I guess I did and that saved my life.
I am 2 years out from my RC. I was not muscle invasive. I am assuming you are because of the chemo? I was T1G3 with lots of CIS and ultimately BCG failure.
When I was first diagnosed my head was spinning just trying to process all the information. We have all been there. I can honestly say that life without a bladder is good. I know that may be hard to believe right now as it was for me when I started my journey. But here I am and I do basically everything I did before – probably more now. I really did not have many problems after my surgery. I don’t recall being in a lot of pain. They give you medication to control that for the first few days. After 3 days post op – they took me off the morphine pump which was fine because I didn’t need it. I am thankful that I had an excellent surgeon. If you have any questions, please contact me. I would be more than happy to answer any questions you may have.
I have my CT scan on August 14. Scanziety! I noticed Sibotak is having PET scan? I have heard that PET scans are better than regular CT’s. Here in Saskatchewan we don’t have PET scans. In fact, today when I picked up my contrast at the hospital, I asked them if they have a PET scanner and they just looked puzzled.
Wishing everyone all the best with their tests and/or procedures!
Tracey
I have had my Ileal conduit for almost two years. I was fortunate that someone mentioned a few tips before my surgery. Placement of the stoma. Think about how you wear your pants – where your belt line is. I was able to pick my own spot along with the help of the Ostomy nurse. Mine is about 2 inches below my belly button and to the right side. Sure glad I did that! The nurse also mentioned to me to ask the urologist for a “good” stoma. Meaning that the stoma protrudes out about 1/2 inch or so. The reason is that you will experience less leaks and better fit with your appliance. As I was laying on the operating table in the OR, I turned to the nurse and said – “make sure he gives me a good stoma”. He did!
This is my routine and it has worked beautifully for me.
I change my pouch and wafer on the 4th or 5th day. Usually first thing in the morning because of less urine output. However, I do after a bath in the evening sometimes.
On the day I change, I use some vinegar diluted with water and wash around the stoma and I pat the stoma as well with the solution.
I wear a two-piece Convetec moldable. Love it! No leaks. Was using Hollister at the hospital and when I came home. Kept having leaks and did not like cutting the stoma size for my wafer. About 4 weeks post-op, I changed to the Convetec pouching system and never looked back.
I add an extra piece to tape at the top and placed a little higher on my wafer tape for extra security and to prevent the tape from peeling back.
I rinse my bag every morning with cheap mouthwash or vinegar. This helps to control the odour.
I take 2 cranberry pills each day to keep the urine acidic to help create a difficult environment for bacteria to thrive in. Never had a UTI yet! I also take one vit C every day.
I shower with my bag and without my bag and wafer. I also take a bath without or with my appliance.
I feel very fortunate that I have had a relatively easy time with my urinary diversion.
I rinse my night drainage bag with cheap mouthwash and/or vinegar.
I keep extra supplies at work and in my car. Should really carry something in my purse, but I don’t.
In the summer, when it’s hot, I usually have to change more frequent – on the 3rd day.
I learned some valuable tips from the Ostomy nurse in regards to skin rashes etc. Keeping the skin healthy around the stoma is very important.
I feel finding the right pouching system is crucial to adjusting to the Ileal conduit. You need to feel secure and not have to worry about leaks. I still remember going out for lunch, a couple weeks after my surgery, and experiencing a leak at the table and having to leave. A person may have to experiment with different brands to find the right system.
Hi Greg,
Sorry to hear that you had to go through another surgery . Just wanted to wish you well and a speedy recovery.
Wouldn’t that be something if someday they have a vaccine? Or something preventative such as the HPV vaccination for cervical cancer. Interesting read about breast milk. Apparently has the ability to kill cancer cells. I was looking at pictures on the net of a papillary tumour in the bladder and after pics when the component of the breast milk was administered to the bladder and the papillary tumour was almost gone. Incredible! It looked like the tumour had been attacked when compared to the before pic. I truly believe in the next few years we will see great advances in the fight against cancer. Sometimes it takes one person to look at a problem from a different angle or perspective to find the answer.
Hi Chris,
Congrats on your all clear!
My urologist told me the same thing about 80%. I also read documentation regarding tumour size, how many tumours and concomitant CIS. I also learned that some CIS may not be visualized during cystoscopy. I asked my urologist about all this stuff and he concurred.
I had T1G3, only one small papillary tumour and concomitant CIS. I had a TURBT in April 2012 to remove the tumour and he tried to scrape all the CIS. I started BCG at the end of April and was scheduled to have a cystoscopy in July. During my BCG treatments, I asked my urologist if he would remove my bladder. I strongly felt that bladder removal may provide me with the best odds. I had a child at home and I didn’t want to mess around with this disease. I spoke with my urologist about all my concerns and what if’s. He agreed to do the surgery.
My final pathology after total cystectomy showed that I still had CIS present in my bladder. I was BCG failure. Had I not had the surgery, he would have recommended bladder removal at my cystoscopy. I have heard of some people being able to retain their bladders for many years following BCG protocol.
One must be vigilant and never turn their back on this beast!I wish you continued success with BCG and may you remain cancer free!
I applied for the disability benefit. I have the ileal conduit. My family doctor filled out the form on my behalf. It was not necessary to see my urologist. After she completed the form, I forwarded it to the CRA. I am now entitled to receive the disability tax credit.
I am also aware that 50% of us with a stoma will develop a hernia. I don’t lift anything over 20 pounds or push heavy objects. From what I have been told from people who have had hernia repair after RC, the surgery can require as much down time as the RC. We stoma people have a man made hernia already. I would think that is why we are even more at risk and it can be very dangerous for us because it could block the urine flow. Also, I spend a great deal of time emptying my pouch, changing the appliance and caring for the skin and stoma. I can’t be more than 1 – 2 hours away from a washroom. These were some of the points my physician documented on the form.
Hi Susan,
I was thinking about the same thing. I have my check up in August and it will be a year since my RC. I have read that urine cytology should be done as follow because it can detect cancer cells in the upper tract . I know of some people who had urine cytology that indicated cancer in the upper tract – ureter and kidney and this was years after RC. I wonder why they have not ordered that for us? When I had my first cysto – the gyne ordered urine cytology which was positive for cancer. I also have not had a chest x-ray and I know how important that is. Stage 1, high grade bladder cancer is serious. My urologist told me that he had patients who had mets from this stage. I feel it is extremely important to have thorough follow up. If they happen to find cancer cells by urine cytology it could be early enough to treat. I am going to ask him about this when I see him. There is a website, I might be able to find the address, that states what the protocol is for follow up after RC and it says urine cytology. This disease is very hard to treat once it gets out! I have an ileal conduit as well and my understanding is that the urine sample is obtained by cath from the stoma nurse.
Tracey
Oh my Shelly! That is a very serious complication! So glad to hear you are doing better. I know exactly how you feel. Getting used to everything – the changes. I like the night drainage bag too. Actually, I love it! So nice not getting up 6 times in the middle of the night. I was teary when I got home from the hospital. It is just part of the healing process – physically and mentally. A little frustrating at times learning the new normal. It is an adjustment. I am old hat now at changing my pouch. Strange as it might sound, most of the time I don’t even notice it. Somehow it just becomes part of you. Take care girl!
Hello Dawn,
A little over a year ago, at the age of 45, was diagnosed with one papillary tumour that invaded the lamina propria and lots of CIS. I was BCG failure as well. However,that was not known until my final pathology after RC showed many areas of CIS in the bladder. I had asked my urologist to remove my bladder during my initial round of BCG treatments. I also believed/believe in an aggressive approach. My urologist would have recommended RC after one BCG failure. I had my RC last July. I have had no complications from my urinary diversion, so far, and I hope that continues. I love sleeping through the night! Something I was unable to do the last few years due to urinary urgency and frequency symptoms caused by the cancer. I do everything I did before my surgery. I wear the same clothes. Life is good! If you have any questions, I would be more than happy to answer them. Take Care!
Tracey
I have my 6 month (post RC) CT with contrast Wednesday, February 6. Can hardly wait to drink that stuff! UGH! Suffering from a bit of scanziety.
