Home Forums All Categories Men and Bladder Cancer Updates and Questions on neobladder and bowel chgs

  • Updates and Questions on neobladder and bowel chgs

    Posted by mmc on January 17, 2009 at 12:13 am

    It’s been a while since I’ve been here and the good news is that I did get the daytime continence (for the most part) that everyone was talking about. It takes a lot longer to go and I find I have to sit down to really empty the neobladder the most. I went golfing last weekend and the stall was broken so I had to stand and at least I know that works. Not having the same kind of pressure makes me nervous about dribbles but it worked ok at the urinal.

    Night time is a different matter and I’d wake up with the pads/depends soaked and I’d be uncomfortable. Now I switched to condom catheters and they are great! Easy to travel with as well.

    I have noticed that I seem to have bowel issues a lot when I didn’t have much of a problem before the surgery. Do others have issues with frequency (sometimes 4 or more times a day), looseness, or diareah?

    I figure part of the reason for more often is that I’m sitting and pushing the pelvic floor. Can that missing segment of small intestine cause all of this?

    Hope everyone is doing well!


    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 system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
    gkline replied 15 years, 4 months ago 8 Members · 11 Replies
  • 11 Replies
  • gkline

    Member
    March 16, 2009 at 4:06 pm

    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]

  • mmc

    Member
    February 2, 2009 at 8:02 pm

    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 system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • Jeff F

    Member
    January 25, 2009 at 6:46 pm

    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
  • Mona

    Member
    January 23, 2009 at 3:32 am

    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!

  • Harry s

    Member
    January 20, 2009 at 10:42 pm

    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

  • Guest
    January 20, 2009 at 4:30 am

    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
    http://www.mayoclinic.com/health/gallbladder-removal/AN00067
    http://www.gihealth.com/
    and i actually found a forum of a bunch of people with it…oh JOY huh?
    http://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

  • RAH

    Member
    January 20, 2009 at 12:42 am

    Mike thanks for the question – and all for their answers,
    I didn’t have any bowel problems prior to surgery.
    However since, I had quite a bit.
    This past June (a year after surgery), I had my Gall Bladder remove and now I have two causes to bowel problems.

    My problem is that I will have a normal solid movement one day, with four watery loose movements every hour or so right after.
    Then it will be a day with out a movement before it starts all over again.

    I am glad that Pat shared her tips of the food trade. I will look at what I eat and record.

    This has been the hardest thing for me to get use to.

    Rick

  • mmc

    Member
    January 19, 2009 at 2:47 pm

    Thanks for the messages. Turns out the bowel issue was more than I expected. I’m in the hospital now (since Saturday morning). Turns out that 2 naval oranges is more than I can handle. Caused a blockage at the resection site. Hoping it is cleared today. THey are going to start me on food to see for sure.

    I think the condom catheters are great. I bought mine at expressmed.com and I find it easier to travel with. I use a pad on flights though but I guess a leg bag would work for those really long flights.

    Even in the hospital, I brought the condom catheters for night time and drain it to a normal night bag.

    Will keep in touch.

    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 system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • Harry s

    Member
    January 17, 2009 at 10:05 pm

    I can definitely relate to the issues you have during the night and am interested in more info on the condom catheter. Where do you get them, how expensive are they? We have a trip planned in March. It would be nice not to pack the pads and depends to handle the nighttime wetness I have.

  • timb

    Member
    January 17, 2009 at 10:06 am

    Hi Mike
    Im over two years into the neo experience and I can realte absoloutely to your issue. I never had bowel problems prior to my surgery but im definitely more irritable since. I have long periods with no problems but definitely have very loose periods. Im much more regular than before – 3 times a day minimum. It can give you quite a sore butt. Particularly in the early days. Pats suggestion of a food diary is a good one. learn what you can handle. Tomatoes are definitely on my list of prime suspects. Grapes and juices can be troublesome too. Fortunately beer seems to leave me unaffected.

    I guess once the bowel is shortened the absorption is affected and more water can come through or something like that. i heard the bowel can actually stretch back over time so your issues may change (get better). I think also since the op that ive noticed more partially digested material in my stool. which i guess is related. so keep away from the tacos!

    Sounds like i have similar continence issues as you. Im 100% in the day now. Absoloutely normal. Nights are a little wetter but i can control to some degree with pads and sensible drinking. I do like a cup of tea in the evenings which can be an issue. I think caffeine definitely plays a role. And salt. Im interested in your experince with the condom catheter. I was offered it early on and poo pooed it as I guess it sounded a bit undignified or something silly on my part.

    My other issue is long haul travel. Ive done a trip to the states last year and I stayed awake for the whole 10.5 hour flight for fear of leakage. My partners australian so we’ll probably do a trip there next year. so that should be interesting.

  • Guest
    January 17, 2009 at 2:08 am

    Hi Mike……welcome back…sorry for the problems. I don’t think this is unusal for a lot of us. I certainly experienced it. I found that things i used to be able to tolerate needed a little tweaking. I eventually made the connection to milk products with my diarrhea.
    In healthy individuals, too much magnesium or vitamin C or undigested lactose can produce osmotic diarrhea and distention of the bowel. A person who does not have lactose intolerance can have difficulty absorbing lactose after an extraordinarily high intake of dairy products. In persons who do not have fructose malabsorption, excess fructose intake can still cause diarrhea. High-fructose foods that also have a high glucose content are more absorbable and less likely to cause diarrhea. Sugar alcohols such as sorbitol (often found in sugar-free foods) are difficult for the body to absorb and, in large amounts, may lead to osmotic diarrhea.
    Some have said certain fruits were the culprit.
    So make a little diary of foods and see if there is a connection…
    Any who….ask the doc……see if he’s ever heard of it….they usually look at you with a deer in the headlight look!:unsure: ……….Pat

Log in to reply.