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Homepage – Forum Forums Muscle Invasive Bladder Cancer Radical Cystectomy longer term issues

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    The more I speak with folks who have had an RC, the more I appreciate that so many seem to suffer some lingering effects of the surgery or other isues that arise that may or may not be linked.

    I wonder if others are interested in some of these things, not as a bad news type of thing, but as a reality barometer. Perhaps some scoot through with no ill effects; others have significant issues; and still others have minor aggravations, but few complaints. Let’s share them for our mutual education and encouragement.

    Here’s what I have found:
    1. Low energy, no doubt complicated by a finding of Celiac Disease. It took me months to get back to a semblance of normal following surgery.
    2. ED – no I will not go into the details! If you don’t know what it is, you don’t have it!
    3. Periodic nocturnal incontinence, influenced by my blood glucose levels (I’m a diabetic); the lower the level, the better my continence.
    4. Irregular bowel function (again, complicated by Celiac Disease, but I suspect that is not entirely to blame).
    5. Infection – several weeks after surgery which caused me to be as sick as a dog.

    Well, there’s a start. Now it’s your turn. For me, these are issue that aggravate, but do affect lifestyle.


    Night time incontinence. Was doing really well but the last couple of months I am having problems even with setting my alarm every 2 hours. The amount of liquid I consume and when does not seem to have any impact. I can stop drinking at 7:00 p.m. and be wet at night or drink up until 10:30 p.m. and be dry all night.
    ED also issue.
    Energy levels are good, bowels, appetite, everything else as it was before the surgery.

    Malcolm Fraser

    Here is mine:

    1) significant pain in the crotch area since the procedure, am taking pain medication and have attended the pain clinic at St. Michael’s Hospital, physicians say it is neuropathic pain that “might” someday go away

    2) ED as well, this is the most aggravating concern for me

    3) was approaching continence at night without pain medication but with medication I am incontinent at night

    4)certainly lower energy but I do go to a health club and work out regularly

    5) I get up 2-4 times during the night to urinate

    6) bowel function mostly normal

    Life is not exactly wonderful, but better than the alternative!



    I haven’t been down this road, but would like to know what divesion you all had. Are these problems associated with the neo? ED I know is related to having the prostate removed but I’m curious to know if the incontinence and bowel issues are related to the type of diversion?


    Thank you Greg, for initiating this level of information sharing and discussion.
    I would like to add a couple more sub-groups associated with RC longer term issues:
    1) the combined impact of chemotherapy + RC
    2) the subtle lifestyle changes for both the person with RC and family.

    Chemo impacted hearing and balance; all travel is planned around washroom location/accessibility.


    Like marysue, I’m interested in what kind of diversion involves what sorts of long term consequences.
    I had an ileal conduit surgery one year ago. For me, everything is back to normal. Energy level, bowel function, general feeling of well being is as it was before the surgery. (I never did feel sick at all with the bladder cancer. Even the BCG treatments had no discernible side effects for me. Increased episodes of CIS despite resections and BCG treatment led to the RC recommendation). I have experimented a bit with one piece vs two piece urostomy pouches, but haven’t had any real problems with skin irritation or leakage.
    The most inconvenient long term after-effect of ileal conduit surgery (to me so far) is the nuisance of the night time collection bag that is essential if I’m going to sleep through the night. On the other hand, I should be pretty darn happy that I do sleep through the night, I think!


    Good topic, Greg. I have not had an RC and hope to avoid one as long as possible. But I have already decided that if I do need one it will be an ilieal conduit. The type of diversion depends on many things, age, health, etc. etc. so no one type is right or wrong for everyone. In general, based on my own readings I think the ileal is least likely to create long term problems. HOWEVER: I have heard of people who have had ilials have lots of residual problems while others who have has neos, etc. have very few problems. I believe everyone will have some kinds(s) of problems. I had a colon resection because of colon cancer, that was in 97 (that’s 1997, not 1897). I have had residual problems ever since. Could have been the chemo, but likely the surgery. When the bowls get messed with (sorry to be so clinical) they seek revenge. I would expect some kind of bowl disruption both short and long term. The small intestine is much less forgiving than the large intestine it seems.



    Thanks for starting this Greg! I agree this is a good topic and helps to validate the road ahead.

    I’ll just add some from my Neo perspective (only 7 months out from RC).
    – fatigue. For me probably relates to low hemaglobin post-op. I also had significant bone marrow suppression with chemo (received Neulasta) and hear that some could relate to bowel resection.
    – finding the most appropriate incontinence products. My incontinence levels changes significantly over the months. I am fortunate to now be continent during the day and at night (still use a timer and decrease fluid intake after 6 p.m.) but I now have a wonderful collection of incontinence products!
    – Infections. I suffered from post op infections x 3 that required hospitalization. For me there was correlation to chronic UTIs with my old bladder and I now continue to take Septra DS every day as prevention (I’ve been doing this for 30+ years so no biggie). It is working!
    – mucus. I can’t say I had a large amount but given my early experience with infection my urosurgeon felt that we should do everything we can to minimize the opportunities for bacteria to cling or hang out in my Neo. I was irrigating 2 x /day but now down to once per day with hopes of discontinuing by year end. I see it as rinsing the tank and also gives me a good indicator of residual management (another area of risk for infection). I am also taking Guaifenesin 3 times/day based on research/experience in the US and recommendation from another BC member on BCAN. It is readily available and inexpensive through US Costco (have a friend of mine who sends it to me). Between the Guaif and irrigations I seem to be fine. I may try D-Mannose with CranActin (another recommendation) but will wait to stabilize once I get off irrigations.
    – irregular bowel. Like others I have yet to settle out. Several years pre-BC I voluntarily chose to change my diet. I eat gluten-free and dairy-free which I think also has a positive net effect on my mucus issues. I have sensitivities only (not celiac like Greg) but I found that I felt much better from the inside out.
    – sexual dysfunction (mostly pain/lubrication). I read with great interest the recent BCAN discussion re: “sex post RC for girls only”. I was very fortunate to have retained my uterus, cervix and vagina (ovaries removed) based on some research coming out of California (where my urosurgeon trained; more healthy female organs being removed with RCs than needed). This has afforded me great pelvic ligament structure and support for my Neo so technically I am intact. However I have the “joy” of surgically induced menopause (I’m 50 yrs old) and now take bio-identical hormones to support changes overall. Fingers crossed on this one!
    – finding the right and most cost-effective tools of the trade. Retail medical supplies and continence products are expensive. My health plan only covers catheters not all the related irrigation supplies and continence stuff. I reuse my catheters/irrigation trays and purchase sterile saline to irrigate (even though I have option to make my own saline). Fortunately I found a wonderful medical supply distributor and can buy direct. Bowers Medical Supply out of BC also has offices in AB and ON. The cost is significantly lower!
    – mental health. As all can attest to this has been the challenge of a lifetime. I consider myself an emotionally strong person and have the most amazing support from my husband and many friends/family. That said I’ve needed time to process the events over this past year and have sought out psychological support. I’ve also held off going back to work until I feel holistically healthy and ready. I’ve spent time also in making sure I am re-engaging in who/what matters most and letting go of the rest. My longstanding yoga practice has been a lifesaver and I just started taking piano lessons (rekindling a childhood dream).

    All in all life is really good. Despite the challenges BC has thrown at me, there are many blessings. I continue to learn and look forward to the journey ahead. As my BCAN friend says: “I’m above the grass!” and will celebrate each day. I am also very grateful to have all of you with me and hope to help others along the way!


    Okay – I will chime in as well. I am a newbie. I had my RC July 12 with Ileal Conduit. I am back at work almost full time. I do suffer from low energy but it is improving. I have had no problems with skin irritation, infections around the stoma or kidney infections. So far so good. Downside – having a leak at work. That happened to me today. I have supplies at my desk. I was wearing low waist pants and sometimes that’s not a good idea because it pushes the.. ahem… contents of the pouch up higher and puts pressure around the flange area. At least I think that’s what happened. Maybe I had a faulty pouch? For the most part, I have not experienced any problems with leaks. I like the night drainage bag because I can sleep through the night but also I worry about it coming apart or twisting the tubing and blocking the flow. That actually happened to me shortly after I got home from the hospital. I woke up in the morning and my pouch was full and nothing was in the night drainage bag. I was scared that urine must of backed up in to my kidneys. Yikes!


    I just have to add to Mollygolly’s comments. It’s been one year for me, but Mollygolly, your comment reminded me that earlier on I also had problems with the night bag. I remember being concerned about urine backing up, just like you. it’s crucial to make sure there is some urine in your pouch when you connect – that creates a vacuum that keeps the pouch draining during the night. When I “hook up” for the night, my pouch actually flattens out completely, even makes a gross sucking type noise, haha. After experimenting with the night time bag in a container on the floor, I am now hanging it by a plastic coat hanger that’s placed between the mattress and box spring. It seems to tangle up less when hanging than when on the floor. I also learned from another website to put the connection cord between my legs and under one leg instead of over my thigh.
    And the leaks, yeah. A few times (maybe 3) I have had pouches with tiny flaws in them – too small to notice, but ended up with a big wet spot on the front of my pants in short order. And several times I somehow forgot to turn off my little tap (I use Hollister) and within minutes – oh, oh.
    One time there was some kind of problem with the little tap and even though I made sure to turn the tap off completely, it leaked.
    Having extra clothes on hand is a must, for sure. I must say, though, that the accidents become fewer as time goes on. You know, I’ll bet there isn’t an ostomate anywhere who hasn’t dealt with leaks.
    Anyway, I appreciated reading your comments. We can learn so much from each other – being in all different “ages” of our cystectomies.


    One other thing I find somewhat disconcerting is when I fall asleep on the couch while watching TV. If I am not empty, I just may wake up to a rather soggy warmth in my nether regions. Leaks are a fact of life if not fully awake, but I cannot seem to predict when they will occur other than when I am asleep. Makes falling asleep on an airplane a worrisome thing. I am usually first in line when the seatbelt sign goes off! If I am empty, there is no chance of an embarrassment. Hasn’t happened yet, thankfully, but I do think about it.
    The dry cleaners love me being a repeat customer!


    I’d like to add – and ask – about one more.

    I experience a significant drop in my serum Creatinine levels. Pre-op with my old/sick bladder I was chronically high (due to reflux as a child) and then chemo took a toll on my kidney function for a while. However after RC/Neo I now have high-normal Creatinine levels!! Blood pressure is also notably lower so the ‘resistance’ mechanism of my sick bladder has obviously created a positive environment for my kidneys and circulatory system.

    Just another good news piece of the puzzle!


    Thanks Susan. I will have to try hanging my night drainage bag as you suggested. Mine sits on the floor in a container. When I left the hospital no one ever mentioned to me about the suction part in the bag and having some urine in there first to help eliminate that problem. Live and learn. Nice to hear from others you have the same diversion and what their challenges are.

    Malcolm Fraser

    I also have the same problem with naps, occasionally waking up wet. I have a pad on the couch in front of the TV just for these occasions.

    If I empty first I usually can nap for an hour and still be dry, not a 100% but close. We were in Italy this summer and I managed to have short naps on the plane if I managed it properly, of course I wear a pad in my underwear on these napping occasions.

    Thanks for everyone’s comments.



    Hymmm. You guys are still scaring me. I think I’ll use my boys’ old soccer ball if I need an RC with a power ventilator and back up drainage pump. I’m absolutely serious, as you all know.


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