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RC - Post Discharge Questions/Thoughts

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This is now my second full day home post-op. Things are going well and I am still amazed at how well I feel compared to what I expected.

Here are some random thoughts and questions...

1. My suprapubic tube is leaking at the insertion site. Lots more than at the hospital to the point I keep a towel there to absorb the liquid. I spoke with the surgeon on Tuesday morning and she said that I could come in for a tegaderm type of cover to help with that. She said that is normal to have some leakage, as long as it is not urine. (urine = has an odor, irritates the skin to equal a baby rash). Since I have none of these, it is abdominal fluid.

After some experimentation I have found that it is due to my positioning. Since I am sitting forward more due to my couch and chairs vs. the hospital. At night I am dry from the same spot. Any other home remedies you guys/gals have used?

2. The suggestion to use a cloth shopping bag to carry both bags (foley and sp) in was a great one. I suggest it to anyone needing to carry their bags around.

3. They put me on too many laxatives. I am going to stop them today but keep going with the stool softener. I was having abdominal cramping today after my 3rd bowel movement in 2 hours.

4. I bought some oversized mens pajama bottoms at Old Navy and have cut the legs down to size for me for comfort. They work really well and have not irritated the incision site. I think my wife bought me two sizes bigger than my usual size.

5. Getting up off my couch has created some abdominal muscle soreness. Nothing I can't live with, but it is a lot squishier than the chair at the hospital.

6. I can't get comfortable at night. I have been laying on my back and propped up by pillows but I keep sliding down or put too much pressure on my butt and it gets sore during the night. Would it hurt anything if I slept on my side (opposite of the suprapubic tube)?

Thanks as always for the great responses!

Related links from BCAN

Researchers are looking for bladder cancer survivors to complete a telephone survey. Click here for more information.

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Information for those newly diagnosed with bladder cancer from BCAN.

Bladder Cancer Basics for the Newly Diagnosed
Download or order a copy of BCAN's patient handbook "Bladder Cancer Basics for the Newly Diagnosed" free of charge.

Clinical trials
Get information about clinical trials and BCAN's Clinical Trials Matching Service which is offered at no charge.

Women and bladder cancer
Information about women and bladder cancer from BCAN.

BCAN's glossary (PDF)

BCAN's November Patient Forum in San Francisco
"Understanding Bladder Cancer: A BCAN Patient Forum"
San Francisco, CA
Saturday, November 7, 2009
9:30 am - 2:30 pm
The forum and lunch are free, but pre-registration is required at www.bcan.org or 888-901-BCAN

Presentations from BCAN's May 2009 Patient Forum
Presentations and slides from BCAN's most recent Patient Forum in Cleveland. Those diagnosed with non-muscle-invasive bladder cancer will be most interested in Dr. Jones' and Dr Pohar's presentations. People diagnosed with muscle-invasive bladder cancer will be most interested in Dr. Gong and Dr. Gilligan's presentations. Dr. Campbell talks about improving outcomes in bladder cancer patients, and Dr. Hansel talks about the importance of pathology in diagnosing, staging, and deciding on treatment for each patient.

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