Bladder Cancer

Angela said:
So for the past two weeks I have been having pain in my kidney, back and groin area. To me it feels like it did when the scar tissue blocked my ureter tube and I had to have a nephrostomy tube until they sorted that out.

So I called my doctor and I went and had my labs done. One of the indicators of a blockage is an elevated creatinine level. It came back ok, only a little bit elevated. Then I had a urine culture to rule out an infection. All good there.

Yesterday I went for a CT scan and I am waiting for the doctor to get back to me. I am really hoping that it is just backing up, and nothing more serious. I can deal with a nephrostomy tube. I have been on the ketogenic diet, and up until two weeks ago I was feeling amazing. Now, I hurt and I am exhausted. I have to go through the whole weekend in pain, wondering what's wrong.

I am keeping in mind that my lab work was good and I had no infection. No blood in my urine either, so that's another positive. Anyway, just wanted to share what I am going through. Asking the DCM to help me get through this and stay healthy.

The aggravating thing is that two months ago I finally paid off my large medical bills!! Grrrrr.....it never seems to end!
Click to expand...

Hi Angela,

I feel for you. Given the amount of surgery you've had, you know your own body better than anyone & know the usual things to look for. I assume you've undergone either a caecocystoplasty or clam surgery to fashion an artificial bladder from your bowel. Previously had my bladder & left kidney removed & undergone extensive reconstruction surgery over many years. Like you, I sometimes get similar pain but not able to nail down the cause every time. As infection has been ruled out hopefully, your recent CT scan will uncover what the problem is.
I was 25 years old when I had my bladder removed followed by further surgery to have an artificial sphincter fitted & aged 32 when my kidney was finally removed. After a shed load of surgery, went on to have 2 children which many doctors thought wouldn't be possible but hey, where there's a will, there's a way.
Severe pain is miserable & exhausting & the not knowing makes it somehow harder to bare. Take strength from the knowledge that you've already achieved so much. You've had to dig deep to get through all the ups & down of your previous surgery & in the same way you're gonna get through this.
Take care & all the very best,
ft
 
freethinker said:
Angela said:
So for the past two weeks I have been having pain in my kidney, back and groin area. To me it feels like it did when the scar tissue blocked my ureter tube and I had to have a nephrostomy tube until they sorted that out.

So I called my doctor and I went and had my labs done. One of the indicators of a blockage is an elevated creatinine level. It came back ok, only a little bit elevated. Then I had a urine culture to rule out an infection. All good there.

Yesterday I went for a CT scan and I am waiting for the doctor to get back to me. I am really hoping that it is just backing up, and nothing more serious. I can deal with a nephrostomy tube. I have been on the ketogenic diet, and up until two weeks ago I was feeling amazing. Now, I hurt and I am exhausted. I have to go through the whole weekend in pain, wondering what's wrong.

I am keeping in mind that my lab work was good and I had no infection. No blood in my urine either, so that's another positive. Anyway, just wanted to share what I am going through. Asking the DCM to help me get through this and stay healthy.

The aggravating thing is that two months ago I finally paid off my large medical bills!! Grrrrr.....it never seems to end!
Click to expand...

Hi Angela,

I feel for you. Given the amount of surgery you've had, you know your own body better than anyone & know the usual things to look for. I assume you've undergone either a caecocystoplasty or clam surgery to fashion an artificial bladder from your bowel. Previously had my bladder & left kidney removed & undergone extensive reconstruction surgery over many years. Like you, I sometimes get similar pain but not able to nail down the cause every time. As infection has been ruled out hopefully, your recent CT scan will uncover what the problem is.
I was 25 years old when I had my bladder removed followed by further surgery to have an artificial sphincter fitted & aged 32 when my kidney was finally removed. After a shed load of surgery, went on to have 2 children which many doctors thought wouldn't be possible but hey, where there's a will, there's a way.
Severe pain is miserable & exhausting & the not knowing makes it somehow harder to bare. Take strength from the knowledge that you've already achieved so much. You've had to dig deep to get through all the ups & down of your previous surgery & in the same way you're gonna get through this.
Take care & all the very best,
ft
Click to expand...

Wow freethinker you have been through a lot, thank you for sharing with me. I am not sure what exactly it was called, but they did fashion me a bladder out of my bowel. The doctor called it an Indiana reservoir or Indiana pouch.
Way to go having your children when the doctors didn't think it was possible! You have inspired me to keep my hope up. I will let you all know as soon as I hear, hopefully tomorrow.

Thanks everyone for your support.
 
Always makes me smile when I read some of the names the medical world comes up with to describe surgical procedures. 'Indiana reservoir' sounds like a posh tepee & my 'Motroffinov' stoma - a Russian machine gun sounding fancy water pistol hee hee! :) :lol:
 
Hi Angela,

How are you? I hope your recent scan revealed the cause of your pain & discomfort.
Take care, :flowers:
 
freethinker said:
Hi Angela,

How are you? I hope your recent scan revealed the cause of your pain & discomfort.
Take care, :flowers:
Click to expand...

I did get the results from my scan and the doctor said it looked good, everything was clear. I am still having the pain so I have an appointment for Tuesday to go and see the doctor and talk with him. I will see what he wants to do next.
 
freethinker said:
Always makes me smile when I read some of the names the medical world comes up with to describe surgical procedures. 'Indiana reservoir' sounds like a posh tepee & my 'Motroffinov' stoma - a Russian machine gun sounding fancy water pistol hee hee! :) :lol:
Click to expand...

This made me laugh! Yes it is funny some of the names they come up with! ;D
 
Angela said:
I did get the results from my scan and the doctor said it looked good, everything was clear. I am still having the pain so I have an appointment for Tuesday to go and see the doctor and talk with him. I will see what he wants to do next.
Click to expand...

Well that's great news that everything is clear!

SeekinTruth said:
Thanks for the update, Angela. Hope your pain can be relieved soon.
Click to expand...

I second that. Take care, Angela :flowers:
 
I did get the results from my scan and the doctor said it looked good, everything was clear. I am still having the pain so I have an appointment for Tuesday to go and see the doctor and talk with him. I will see what he wants to do next"
Click to expand...



Sorry to hear you're still experiencing pain Angela. On the one hand, it's good news your scan was clear but also frustrating for you as you're still having pain. Glad you didn't have to have the 'hosey mosey u bend again. Plumbing eh? If nothing else it's pissistent! :D

Just a thought but when you catheterize have you noticed any change in the amount of mucus/gunk in your pee? If it doesn't get flushed through, it builds up & that can cause a blockage resulting in pain similar to what you describe. Not able to use my stoma at the moment but when I did, needed to catheterize via the urethra as well to flush it all out?

Hang in there, you're bound to be feeling a bit low & stressed but you have a lot of strength & will get through this. Thinking of you & sending lots lots of hugs & good wishes.


Mod's note: fixed quote tag
 
freethinker said:
Angela said:
"I did get the results from my scan and the doctor said it looked good, everything was clear. I am still having the pain so I have an appointment for Tuesday to go and see the doctor and talk with him. I will see what he wants to do next"
Click to expand...

Sorry to hear you're still experiencing pain Angela. On the one hand, it's good news your scan was clear but also frustrating for you as you're still having pain. Glad you didn't have to have the 'hosey mosey u bend again. Plumbing eh? If nothing else it's pissistent! :D

Just a thought but when you catheterize have you noticed any change in the amount of mucus/gunk in your pee? If it doesn't get flushed through, it builds up & that can cause a blockage resulting in pain similar to what you describe. Not able to use my stoma at the moment but when I did, needed to catheterize via the urethra as well to flush it all out?

Hang in there, you're bound to be feeling a bit low & stressed but you have a lot of strength & will get through this. Thinking of you & sending lots lots of hugs & good wishes.
Click to expand...

I saw the doctor and the good news is he said that they can't find anything wrong with me. I am almost at my 4 year cancer free mark, so that is great. I am still having some minor pain and discomfort. We talked about anything I had been doing different, and when this all started, I had recently started working out on a total gym. He said maybe because of the surgery, and my core muscles are weak and the fact that I had major abdominal surgery, it could be related to that. Maybe I had tried to do too much too fast. I know that the muscles in their are a mess, and I get charlie horses in my stomach area when I do certain things. Like putting my hands behind my back, bending over and stretching before doing eiru eolas....instant charlie horse!! Had to cut that exercise out!!
The doctor suggested some physical therapy to build up my core muscles more slowly, and we will keep an eye on things. I am not sure if I totally agree with it, because it really doesn't feel like a pulled muscle, but for now I will wait and see.
Freethinker, as far as flushing the mucous, I try and remember to do that at least once a week, and perhaps I need to do it more often then that. I can only flush through my stoma because he removed my urethra when he took out my bladder. Thanks for the idea, I will start flushing more often.

I love your sense of humor Freethinker, made me laugh!



Mod's note: fixed quotes
 
You must log in or register to reply here.

Trending content

Back
Top Bottom