Ileal Conduit vs Neobladder decision @age 54

[darmstro]

Since my latest biopsy showing probably muscle invasion, I’ve tried many alternative therapies to treat my BC rather than face RC. However, it appears that RC will be necessary Oct 3 (return of blood in urine). I’m struggling with the Ileal/neobladder decision … I know neither is optimal but my priority is to be able to continue an active outdoor lifestyle (hiking, cycling, kayaking, traveling etc).
I understand neobladder has a longer recovery period, but with likelihood of normal functioning afterwards. But Ileal requires ongoing maintenance and care although some level of normal activity is possible.

I live alone, so I’m not sure what supports I’d need at home after neobladder surgery beyond first week of pain & surgery recovery. For the period I’ll be incontinent, would I need regular help at home?? For what physical reason? I’ll definately need some social support, but that doesn’t require big commitment from others. Do I need to stock up on adult diapers? lol

Any suggestions on the decision or experience after either would be greatly appreciated. I guess I’m also still struggling with the fact that this is going to be my reality:(

With much gratitude,
Daryl

[Ieva]

Hi Daryl,

My husband Malcolm was diagnosed in 2011 with muscle invasive bladder cancer. He decided on the neo bladder – he did not like the idea of having “equipment” to care for. As well, he had never had any type of surgery in his life (64 at neo surgery time), so also wanted an outcome as close to what “regular plumbing” could do.
He had to give up sailing, this more due to the permanent side affects he experiences due to his post op chemotherapy. Otherwise, he rides his bike, goes to the gym, activities that he did before. As well, we have continued to travel. On planes, we book seats close to the washroom, to avoid line ups. Cruising allows for interesting travel, and all the conveniences of home. Road trips, we plan a route that will have easy access to washrooms around the 2.5 hour mark. A neo bladder is on the “clock”…each person, during their own training time, learns what their best dry time is. Some people have a longer time period. By 3 months post op, he was riding his bike, going to the gym and virtually dry (continent) by day.

Post op – as you live alone, do have your GP and surgeon recommend home care nursing to come in every day as well as help with self care and cleaning. Your body needs time to heal from this complex surgery. We had home care daily to check his incision, check the catheters and flush them, remove his staples, manage his incision…which was a bit open and draining for a bit.

Even though it is called bladder surgery, it is also bowel surgery. So, part of the post op period, is helping the bowels to return to normal function, as well as training the neo bladder, once the catheters are removed. Stock up on broths, soups, easy to digest foods. Lots of water or cranberry juice.

During the bladder training period for a neo, yes, do stock up on adult diapers and mens’ guards. As well, washable incontinence pads help keep sheets dry and furniture easy to care for, especially during the 1st few months.

Malcolm is now more than 5 years post op and continent by day.

Keep asking questions!

Ieva

[Gord]

Hi Daryl. Excellent info from Ieva! I had my RC with Neo three years ago in June at age 53. Really happy with my decision. Though I have never considered myself an athletic guy, I am active. Post RC I still travel, hike, canoe, do road trips. I also happily returned to full time work three months post surgery. I just need to find a place to sit down to empty my neo every 2.5 – 3 hrs, though I have occasionally gone longer when needed. The urge to go to the bathroom is gone, but you have a sense of feeling full, so you know its time. Though this means there are some activities that are off limits, it just usually requires some forethought and planning. My life seems completely normal, and with no external baggage, feels completely normal.

I agree with Ieva about the post surgery home care. That would be really helpful. It is major surgery, and having that extra help will also allow you to gain the confidence to take care of things yourself after a couple of weeks. The training of your neobladder takes some time – up to a few weeks – and you will be wet. So the adult diapers, shields and pads are a good investment. I bought a seat for the toilet that raised it up a few inches, which helped – not as far to sit down. I also had a container that sat inside the seat so that I could measure my output, and time between voiding as I went from every 30-45 mins to 2.5 to 3 hours. The log freed me from remembering every detail, and gave me confidence that I was making progress.

You use your pelvic muscles to exert pressure on your neo to go, so one very helpful thing I did was to visit a physio that deals with pelvic health for men to get an exam and evaluation of my pelvic health and strength, before my surgery. Turned out it was very good, which indicated probable good success and returning to full continence. I am dry both day and night. So much so that I occasionally have to self catheterize to make sure I am emptying properly and avoiding infection. Once you get used to it, it is really not a big deal, and much much easier post surgery, with no prostate, vs those awful pre surgery cystoscopies! The ability to self cath saved me a couple of times on trails and trips where there was no outhouse – you can stand up to do it.

It is a big decision, but from others I have spoken with, everyone seems happy with their outcomes, be it neo or IC, especially given the alternative. You get used to your new normal. As Ieva said, keep asking questions, there are people on this site only to happy to offer some thoughts about their experiences with what you are going through. You are not alone!

Gord

[darmstro]

Thanks Leva (& Malcolm) & Gord,

Yesterday I got new CTScan results … and there is still some signs of a tumour, plus increasing blood continues in my urine, so it’s clear that surgery is only option remaining. I’m still thinking that I’ll choose the Neobladder option even though doctor said that night incontinence is quite likely (more likely than is reported in literature). And if it’s determined that it’s not possible because of cancer spread in urethra, I’m still OK with Indiana pouch.

I am still having difficulty coming to terms with accepting that I will have major surgery with a long recovery and have my bladder removed. I’ve always considered myself very healthy, so it’s been very challenging to accept my new reality:( Can others comment on how/if they came to accept the idea of major surgery?

I found some videos on BCAN.org very helpful … The New Normal, What I wish I Knew Before Surgery.

I’m participating in BCC fundraising walk this weekend in Vancouver and several friends have already contributed to support me. I understand that friends/family maybe don’t know how to support me, so this is one way.

My mom will be staying with me for a while after I leave hospital. And I’m gathering rest of my team for support other ways and after my mom leaves.
I’ve started practicing kegals and will be locating local supply of diapers & pads.

[SJay]

Hi Daryl

There are a lot of people’s experiences on the neo or IC decision in the posts. It’s worth searching through them. Most people seem to be satisfied with whatever decision they make. The comments above are useful, although everyone has somewhat different needs and issues.

I had my RC with a neo last April. My wife helped me when coming home. More importantly, my wife, sister and daughter all helped out while I was in the hospital. The nurses are great, but they don’t have time to deal with everything. This is the time you have the least capability of doing things on your own. Having someone to get you your tooth brushing and water, help change your gown or bed pad, get you something edible to eat, etc. was wonderful. Just being tired and recuperating makes it nice to have someone around to help once you get home. Having your mom there will be really useful. You may not want her assistance when flushing out your new bladder, but it’s amazing how much modesty gets lost after going through this process. For myself, I could do pretty much everything for myself, including flushing and making up new saline, but my wife often helped, particularly at the beginning. I didn’t need daily checking of the wound by anyone, other than myself, and a friend who is an RN removed the staples and put on wound closures when it was time.

I used pads during the day for a while and eventually stopped. I still use the diapers at night because I can leak a bit, particularly if I’m in a deep sleep. I don’t set an alarm, I just wake up when I’m full, which usually works The key for me is to use a type and size of diaper that fits snugly to keep myself in position so any leaking doesn’t go out the sides. A fitted waterproof bedsheet is a good idea in case of an accident.

Like Gord, I kept a log of how much I urinated and how often for a while. It is some comfort to see things improving over time. Being of an engineering mind it went onto a spreadsheet with automated stats and graphs (haha).

I’ve been pretty active and was hiking after 5 weeks. A few weeks ago I went ocean kayaking for a week. Yes, I took diapers and slept in a sleeping bag. I did catheterise once, taking care to keep everything clean and sterile, and that worked out. I also packed some antibiotics in case of an infection, but I haven’t had any infection so far. I also travel, go to the gym, cycle and ski season is just around the corner.

For myself, I appreciate not having to deal with the external equipment the IC needs. When I was making my decision on whether to get the neo or not, I discounted any temporary issues and focused on what I wanted for the long term.

You don’t say if you are having neoadjuvant chemo, but that takes a toll. I still don’t have the strength and stamina that I used to have.

There are also issues of sexual health. I’m just finding out there are things I could have been doing earlier, but wasn’t aware of. Ask your uro. Unfortunately the Men’s Health clinic at VGH is closing very soon.

As to dealing with the idea of this major surgery, my feeling was like sitting in the roller coaster as it leaves the platform. You know you can’t get off, so you hang on, brace yourself and accept that there is going to be a wild ride, but all will be OK at the end of it.

I think there is more I could add. I keep remembering little bits and pieces. Let us know if you have any other particular questions. I’m happy to PM or chat on the phone if it would help.

Overall, I think I’m doing just fine and enjoying life. Some of that I attribute to having a positive attitude and just getting on with having the life I want to lead.

Cheers
Stephen

[StephenW]

Hi Daryl,

I echo all the comments made above. Like you, I had never had surgery before my RC and neobladder (at age 62). The question of dealing with the idea of having major surgery is an interesting one. My dealing with it started with the diagnosis. As the other Stephen said above, keeping a very positive attitude is critical, especially before surgery. When I was diagnosed, I let everyone know immediately and told everyone not to say: “I’m so sorry.” My feeling was that having everyone sorry for me would just make me feel sorry for myself. Does that make sense?

The other thing I did was to keep my sense of humour. I joked with the porter on the way to the operating room and he laughed. It was a great way to relax. The beauty of major surgery is that one minute you’re listening to the anesthesiologist putting you under, and the next minute you wake up and it’s all over. I later had to have surgery on a hernia that developed and the idea didn’t bother me in the least.

Like those who commented before, my life is great. The cancer diagnosis was an opportunity for me to change the lifestyle I led that likely resulted in the cancer in the first place. People think it’s a bit weird when I tell them that I’m thankful for the cancer diagnosis because it inspired me to live a much healthier life. But, maybe that’s just me.

I get along great with my neobladder. If all goes according to plan, you’ll likely be continent all day. I can go 4 or 5 hours between urinations (after 3 years post-op) but nightime continence is a problem. I wear “special underwear,” as my partner calls them, every night. You’ll find that you’ll likely need a daytime nap after the surgery and should wear the pants in case you fall into a deep sleep. That’s when the neobladder seems to lack control the most for me. I have no restrictions on activity or diet, although some people have certain foods that give them bowel problems. Oh, and drinking tons of water is a requirement, as it helps keep the mucous thin. Your neobladder will continue to produce mucous, as it is a piece of bowel. At this point, the mucous production is minor for me, but it varies from person to person.

Your sex life will change, but how much it changes varies considerably. As suggested, discuss it with your doctor after you’ve recovered from surgery. With some experimentation, you may discover some amazing things you were’t aware of. At least I was never aware!

Going with the neobladder was a great choice for me. Be aware that, during surgery, the plan sometimes needs to change. It’s not the end of the world. There are many people on this forum who are living great lives with an ileal conduit.

All of us are here to help you through this experience. Please let us know if you have any questions and we’d all be happy to answer them.

Best of luck!
Stephen

[darmstro]

An update:
I had the cystectomy on Oct 4 resulting in an Indiana Pouch. Been home for 6 days and things going well except for being bored. Bowels doing well. Stitches come out tomorrow. New Normal is here but still not happy about it. Should be grateful for support I received and the new lease on life, but I’m just not there yet.

[SJay]

Hi Daryl

Glad to hear the surgery and recovery are going well. As far as getting your head around the new you, as soon as you are able I would encourage you to get on with your life and do the things you enjoy. There isn’t anything that your IP will stop you from doing. I think you’ll find yourself feeling more positive as you do.

Cheers
Stephen

[Gord]

Hi Daryl. Well, congrats on getting to this point – post surgery and on the road to recovery! I think where you are at is pretty normal. I remember during my journey, pre surgery, it was all what is next, prepping for that, being hopeful and optimistic, and all of that, all very sincere. But post surgery I was faced with my new reality and it took some time to accept and adjust. I would even say some of my roughest days were in this period. So you are not alone in what you are feeling. Hopefully, as the days and weeks progress, and you get out and do more, and become more comfortable managing your IP, things will come around. So give yourself a break. You have been through a lot. I think your best days may be ahead of you!

Hang in there,
Gord

[Author]

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