Updates and Questions on neobladder and bowel chgs

15 years 1 month ago #24529 by GKLINE
I an sorry to be so late to this discussion. I thought this subject was only affecting me. I should know better than that as I know EVERYTHING is on the table in this site.
I am afflicted with the threes. Before surgery I was regular as a clock. Now, I am irregular in timing, maybe I go once a day, or more likely 3 movements in an hour! It is always a surprise as to what I get.. loose, hard, or both. I never really thought about it as being after surgery change.
Thank you for bringing up your changes. I am truly a reactionary about all of this. I just deal with it as it comes and never give much thought about WHY. I don't seem to be as much in touch with my body changes, and I need this blog to stop me, and make me think. Thanks

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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15 years 2 months ago #23968 by mmc
Hi everyone,

I forgot to check back in here after getting out of the hospital. I did get out on Tuesday as the blockage cleared up Monday night. That's a lot of days on barely any ice chips but I did not want to take the chance on too many ice chips for fear of getting that $(*% NG tube. I had that aftr my ilius from the RC surgery and do not want that thing up my nose and down my belly every again!

I also found out that instead of stitches, I have two rows of titanium stapes in my intestine. I also learned that they don't use the end of the small intestine (where it meets the large intestine) anymore due to the B12 dificiency risk. Mine was cut right about the middle of the small intestine and now that I have had the blockage, I can pretty much pinpoint exactly where the stapled section is.

Staples, apparently don't allow for the same amount of stretching as stitches after healing. Now I know to be more careful so hopefully I can avoid that problem again. At least I will know what it is if it does happen again.

So....if you also got stapes, be careful of organges, tangerines, strawberries, artichokes, and similar foods. Chew things like steak and fibrous vegatables even more than you used to.

The intestinal blockage and bowel changes are two things I didn't see anything about in my pre-surgery research. Maybe these posts will show up when people (in my previous position) do searches. Had I known about the staples versus stitches, I would have asked my Dr. about it ahead of time and at least been involved in the decision (with knowledge of the pros and cons of each). I'm not saying it would have been a different result, but I would have at least known of the risk and had some clue as to what was going on when I did get the blockage.

For those that don't know: As your intestines push the food along, it isn't a steady continous slow push all of the time. It is a push, relax, push, relax. If you get a blockage, you get intense pain when the intestines try to push. If it doesn't clear on its own, then surgery is needed to either squeeze the food through the constricted/blocked area or cut the intestines to remove the blockage. Actually cutting them is quite rare though as usually the squeezing through works. The pushing pain comes on strong, goes away completely and comes on strong a few seconds or minutes later. My mistake was also thinking "Gee, maybe I need to eat something". If you each much after you get the blockage, most likely you will vomit it up. That's probably better than having too much food in there getting pushed up to the blockage point. Morphine slows the action of the intestines and gets rid of the pain. I would not suggest trying to treat yourself by not eating or drinking as you will get dehydrated if not on IV fluids. Besides that, I don't know to many folks who can get their hands on morphine for home use. You can get regalin, which increases motiliy and they used that on me in the hospital as well.

As soon as it passes, you feel perfectly normal again (even though folks will be asking for days how you are). :) When in the hospital with IV and pain meds, you must walk, walk, walk and walk some more. If you aren't sleeping you should be walking. It helps clear the blockage as well. Apparently I set some new record at my local hospital for walking.

Best to all!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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15 years 2 months ago #23730 by Jeff F
I have the ileal conduit, like Rah. But I have better BMs and more regular now than ever. I don't know how much intestine is used for the conduit, but it apparently hasn't caused problems in that area for moi. I eat a light to medium breakfast, usually, sandwiches for lunch, and a solid dinner. Snack during the evening. Lots of liquids. Best of luck.

BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008

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15 years 3 months ago #23686 by Mona
My husband had his RC over 2 years ago and has similar bowel problems to those described here. He didn't have any issues before either. I guess that extra 2 feet was quite useful!

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15 years 3 months ago #23613 by harry s
Mike - Sorry to hear of your recent problems. Hope you'll be out of the hospital soon! Thanks so much for the info on condom catheters. We'll definitely look into this as an option and hopefully Harry will have the same positive results you've experienced. Margot

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15 years 3 months ago #23599 by Patricia
Hi RAH......yep its because of the lack of bile that the gallbladder produced...my friend had this happen and her culprit is fried foods mainly...found a couple of articles on it
www.mayoclinic.com/health/gallbladder-removal/AN00067
www.gihealth.com/
and i actually found a forum of a bunch of people with it...oh JOY huh?
www.healingwell.com/community/default.aspx?f=26&m=689080
So i guess you have to find the culprit foods to avoid...i'm sure they're the ones you enjoy most!! And there's some pretty good ideas on that forum..at least to run by your doc.
I have a feeling this is another one of those things that seemingly are not fully reported........Pat

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