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!
Cheers!
