newly diagnosed

15 years 1 month ago #1288 by rolsen64
Replied by rolsen64 on topic newly diagnosed
Hi Ed,
Good to hear you are back home - hope all went well and uneventful with your surgery. Sorry I missed sending you my "canned" postop tips earlier - but some may still be useful.

Continue with your walking. Hold a pillow or stuffed animal against your gut - kinda roll to get in and out of bed. Even a few steps a few times a day will help get the gas moving and bowels rumbling. No food until the bowels rumble, of course.
If constipation is a problem (pain meds usually cause it), ask for stool softeners - over-the-counter include Surfax, colace, ducolax. If diarrhea is a problem (antibiotics the culprit), try Culturelle. Culturelle is lactobacillus GG, a probiotic developed by 2 GI specialists (Drs. Gorbach and Goldin) at Tufts Univ Boston - is designed to help keep intestinal flora in balance. It's available over the counter, but you may have to ask the pharmacist to order for you. More info - Amazingly, most doctors, even the average GI specialists, have never heard of Culturelle. Gorbach and Goldin need to do a better job of getting the word out!

Despite the cavalier attitude of the uro and staff – to eat whatever you want, you need to do what is best for your situation. Typically, it's best to stay on a VERY bland diet - bouillon, gatorade, tea, baby rice cereal, jello. Usually, you can graduate to scrambled eggs, toast, and rice Krispies. Frozen fruit bars, sorbets, mashed ripe bananas, and applesauce are usually OK. Once the gut gets somewhat settled down, add only one food at a time to see if it works. If GI problems persist, try eliminating dairy products until foods are going down without a problem. Ensure and Ensure Plus are great, but contain some milk products. There are good soy alternatives - soy ice cream, cheese, meats, chicken, etc. Try not to worry about weight gain or loss - just try to get plenty of fluids and some nutrients daily. Frequent small meals are often easier to process than the usual 3 large meals.

ANY sign of flank pain, fever, chills, ague, dehydration, call your urologist ASAP. If you can’t reach your uro, go to the ER and at least get an IV fluid line going and have the urine cultured. It usually takes a few days for results, but you can get started on a broad spectrum IV antibiotic as well. Incidentally, this is not uncommon after RC! In addition to comfy sweats, pick up a few large waterproof bed pads. The large size are usually available at the medical suppliers, but a couple of the large baby crib pads work fine and are easier to wash.

Do NOT get too enthusiastic about getting your abs back in shape too soon after surgery – don’t want to strain or pop anything loose. No severe twisting/reaching or heavy lifting for a few months minimum, and always check with the surgeon BEFORE doing the rigorous stuff.

Hope all continues AOK. Please feel free to email direct.
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15 years 1 month ago #1287 by ed_b
Replied by ed_b on topic newly diagnosed
Finally made it home (after 9 days in hospital). What an experience. Prior to surgery, I had found a list (a one pager) of things good to eat and not good to eat after a cystectomy. Anyone have that list? Would appreciate it if anyone can help.

thanks ed b

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15 years 2 months ago #1168 by Rosie
Replied by Rosie on topic newly diagnosed
Ed, I certainly feel your concerns and will keep you in my thoughts and prayers. When I was so traumatized with my surgery, pathology and prognosis the book Love, Medicine and Miracles was a settling yet motivational read. Dr. Bernie Siegle who work(s) extensively with cancer patients has some very revealing insights that can be applied mentally, physically and spiritually to ease the tremendous challenges you/we face and to bring you through as a strong and confidant survivor. Even though some of us may not be cured of b/c we can be healed through it. Do yourself and favor and read the book yourself and give to your family to read also.

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15 years 2 months ago #1165 by Rosemary
Replied by Rosemary on topic newly diagnosed
Hang in there, buddy. Sudoku puzzles are good for keeping the mind from spinning out of control.

I'd keep the alcohol as moderate as calms the nerves, but it is a depressant. Especially be moderate before going under anesthesia...

I'm thinking of you.


Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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15 years 2 months ago #1163 by ed_b
Replied by ed_b on topic newly diagnosed
I'me having my cystectomy (with Ileal pouch diversion) on 8/28. I 'm trying to be strong for the sake of my bride of 24 yrs. and my 17 and 19 yr. old children. Any ideas on how to keep my spirits up for the next 7 days? By the way, that 2 day liquid diet prior to operation, are gin and vodka (in moderation) clear liquids that are allowed?

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15 years 2 months ago #1031 by rentanag
Replied by rentanag on topic newly diagnosed

There is the possibility of having bladder preservation after receiving a combination of radiation and chemotherapy, this was something an oncologist suggested to me as an option to my treatment.  However I chose not to go that route, and my treatment consisted of checking the nodes 1st and when those were negative they did cystectomy and when  the other nearby organs (uterus, ovaries, fallopian tubes, and cervix) were checked for disease and were negative I was fortunate to receive an ileal orthotopic neobladder hooked up to my own plumbing.  Except for incontinence at the beginning, I actually consider that I had an easy time with my bladder cancer surgery and everything that's come along since (I also didn't have any chemotherapy before or after my surgery).  On the seventeenth of this month it will be 2 1/2 years that I'm cancer free, and although I don't hold my breath anymore between follow-up appointments I do know I still have a ways to go before I can feel really secure.  But this is pretty good!
The method I mentioned at the beginning (bladder sparing) might be mentioned by your oncologist, if it's not ask him whether you would be a candidate for it.  If you don't hear anything from this oncologist that you feel comfortable with you should ask to see a second oncologist or even a third.  It's all about what feels right to you, within reason.  Some doctors call the internal pouch a neobladder also, just not an orthotopic (in the normal place) neobladder.  
Best of luck on your journey, and of course keep us informed as to how it's going for you.


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