recovery problems

I recently had a radical cystectomy for bladder cancer, and I am now cancer-free. But recovery has been slow, especially with regard to my small intestine (of which 24 inches were used to create my neo-bladder). After two months I am still having a lot of trouble with digestion and have an inordinate amount of gas and bloating which often results in several agonising trips to the toilet within a couple hours, including painful diarrhea.

My doctor has prescribed Questran (possibly called something different over there), but it's hard to find and I'm still waiting for the pharmacy to get a supply in.

Anybody have any answers? I try to keep a relatively acid-free diet (no citrus juices, coffee or artificial drinks) and eat healthy. Any additional info would be great.

I would also just like to add that, while I sympathize with those people whose pets have cancer, it's a shame that so much of this website's content is taken up by those people. You can always get another pet. Replacing a spouse or family member is impossible. I've had an extremely hard time finding information here about my problem and would appreciate some valid help for human beings.

 

On 1/4/2008 copenhagen44 wrote:

I recently had a radical cystectomy for bladder cancer, and I am now cancer-free. But recovery has been slow, especially with regard to my small intestine (of which 24 inches were used to create my neo-bladder). After two months I am still having a lot of trouble with digestion and have an inordinate amount of gas and bloating which often results in several agonising trips to the toilet within a couple hours, including painful diarrhea.

My doctor has prescribed Questran (possibly called something different over there), but it's hard to find and I'm still waiting for the pharmacy to get a supply in.

Anybody have any answers? I try to keep a relatively acid-free diet (no citrus juices, coffee or artificial drinks) and eat healthy. Any additional info would be great.

I would also just like to add that, while I sympathize with those people whose pets have cancer, it's a shame that so much of this website's content is taken up by those people. You can always get another pet. Replacing a spouse or family member is impossible. I've had an extremely hard time finding information here about my problem and would appreciate some valid help for human beings.

I too find it odd that people have posted a lot about pets on this web site?

I also was finding it hard to find information on bladder cancer and answers to questions that bladder cancer patients could only know.I did find a very helpful web site called blcwebcafe.org (bladder cancer cafe) this web site is full of people going through every type of bladder cancer and many have had a neo bladder built. I have have had half my bladder removed and doctors wanted to give me a second operation to take it all out and give me a neo bladder BUT! things didn't work out when they opened they seen the cancer had spread and left the bladder in hopes chemo would work. I have been on chemo since march 07 and they finally found a drug that is keeping me stable:)

I really feel that you will find alot of help on this site so please check it out!             blcwebcafe.org

dasiy bear

 

On 1/4/2008 copenhagen44 wrote:

I recently had a radical cystectomy for bladder cancer, and I am now cancer-free. But recovery has been slow, especially with regard to my small intestine (of which 24 inches were used to create my neo-bladder). After two months I am still having a lot of trouble with digestion and have an inordinate amount of gas and bloating which often results in several agonising trips to the toilet within a couple hours, including painful diarrhea.

My doctor has prescribed Questran (possibly called something different over there), but it's hard to find and I'm still waiting for the pharmacy to get a supply in.

Anybody have any answers? I try to keep a relatively acid-free diet (no citrus juices, coffee or artificial drinks) and eat healthy. Any additional info would be great.

I would also just like to add that, while I sympathize with those people whose pets have cancer, it's a shame that so much of this website's content is taken up by those people. You can always get another pet. Replacing a spouse or family member is impossible. I've had an extremely hard time finding information here about my problem and would appreciate some valid help for human beings.

This may be late info for you on the Questran, as your posting was on 1/4, but Questran is a stool bulkener that can be very helpful in aleviating diarrhea by firming up the stool. It generally comes in powder form that you mix with liquid. I am one of the people that is on this web site because of a pet with cancer, I am very sorry that you are having difficulty finding info on your disease,  we post on this website regarding bladder cancer in our animals and apparently the sites link for whatever reason. Best of luck to you for a great recovery.

hi how are you. i am 45 years old and had an indiana pouch placed throught bladder cancer. i had to get a hysterectomy and my full bladder removed that was about 2 and half years ago. i just feel since i have had the surgery i put on alot of weight always tired and am at my wits end trying to speak to people with this surgery or bladder cancer as our age is quite rare to have this please email me --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

On 1/4/2008 copenhagen44 wrote:

I recently had a radical cystectomy for bladder cancer, and I am now cancer-free. But recovery has been slow, especially with regard to my small intestine (of which 24 inches were used to create my neo-bladder). After two months I am still having a lot of trouble with digestion and have an inordinate amount of gas and bloating which often results in several agonising trips to the toilet within a couple hours, including painful diarrhea.

My doctor has prescribed Questran (possibly called something different over there), but it's hard to find and I'm still waiting for the pharmacy to get a supply in.

Anybody have any answers? I try to keep a relatively acid-free diet (no citrus juices, coffee or artificial drinks) and eat healthy. Any additional info would be great.

I would also just like to add that, while I sympathize with those people whose pets have cancer, it's a shame that so much of this website's content is taken up by those people. You can always get another pet. Replacing a spouse or family member is impossible. I've had an extremely hard time finding information here about my problem and would appreciate some valid help for human beings.

Hi,

 My husband just had a neobladder in 16 days ago and is also having a lot of gas and bloating. I have told the  doctor and he seems to think it is not a big problem. He told us to try beano and what a joke that was, I tried pepcid and that seemed to help a little. Is this going to be a pemanent problem do you think? I'm wondering if it is because the intestine was used to make new bladder? God I hope not, he is in so much pain from the gas.. This all happened so fast I did not have time to invesigate the neobladder, pro and cons. If you could give me a up date on your situation that would help me a lot.

 Janice

my dad had this sugery two years ago and alos went thorugh what you are describing.  i dont know exactly how long it lasted but im thinking the first six months to a year were the worst.  now it seems that it is not an issue for him anymore but he does have sensitivly to foods and gets the runs more often than he would like.  he is more in tune with what is causing these episodes and trys to keep the food intake like milk to a minimum. 

 

be patient it gets better and the first year is rough but after that you will return to feeling much better and understanding how your new body parts works.  Hang in there!