Prostate Cancer Survivors






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Post prostatectomy care issues the doctor didn't tell me about

Thought I'd share some issues the doctor and his staff never told me about prostatectomy aftercare comfort and functionality. This surgery was not the cakewalk I though it was, but still worth every uncomfortable minute to get the cancer out!

I had significant perineal pain (pain in the posterior) and absolutely needed a cushion to sit on a hard chair. I had a difficult time with this pain when getting in a car and even driving. I'd get a butt pain attack. This condition was mostly an issue the first week or so. I was given a prescription for a stronger (than over-the-counter) hydrocortisone cream that helped with the anal pain.
Defined via the net: perineal pain occurs adjacent to the anus. Typically the pain and discomfort is located in the area between the anus and the scrotum or penis in men.

I could have used a raised toilet seat with handles as I had so little slack with the catheter, I couldn't spread by legs to sit on a regular seat. I also had a hard time getting up and down off the toilet without support. I ended up hovering over the toilet with the seat up to have a BM, leaning on a cane in each hand (walker probably would have worked too). Not fun!
Part of the reason I had so much discomfort is that I had SEVERE bruising of the abdomen. Even my doctor was amazed at the extent. I had deep purple bruising between the navel and groin from side to side.

I slept in a recliner for weeks after the surgery. I was sore and restless and sleeping fitfully at best. I also couldn't stand to lie flat in bed, as I'd get perineal pain attacks that I'd have to walk-off until the pain dissipated. Also, for the 2-3 days post surgery, I had significant gas pains from the CO2 gas they pump into the abdomen to open the cavity during surgery. Raising the legs helps with the discomfort, combined with pain pills (what is prescribed varies depending on if you have pre-existing conditions)

I could have used a chair with arms at the table when eating as I had a hard time getting up and down in the first week or so. I ended up eating at the kitchen counter.

You need something to hang the catheter urine collection bag on in the shower (no baths!). I luckily had a hand rail clamped on the bathtub to hang the bag on. I also had a table next to the recliner (I slept in), to hang the urine bag on (it had a criss-cross leg assembly). You need a lot of washcloths to clean the catheter and tubing. We bought replacement urine bags, as washing them out (as suggested) was a pain and didn't seem sanitary enough for me.

I found it impossible to use the daytime urine collection bag except during doctor was too hard to reach since it has to hang low on the wife had to attach the thing and it was too hard to empty by myself. I spent the time until the catheter was removed...carrying around the nighttime bag, combined with wearing hospital gowns my wife had to run out and buy...nothing else was practical clothing-wise.

I had difficulty healing one of the laparoscopic incisions, as it was at the waist and kept getting irritated by the belt line rubbing. I had to wear band-aids for weeks until this spot healed enough. Stick with a fabric band-aid that is an easy release type...even at that I had irritation that I covered with hydrocortisone at night.

I had to get Lamisil antifungal cream since, despite two showers a day and using a hair dryer to dry the area, I got a fungus attack in the groin, probably from the incontinence pads. Lamisil worked much better than anything else I tried.

Best wishes from Streamwood, Illinois, USA

Re: Post prostatectomy care issues the doctor didn't tell me about

Bill; Sounds like you ran the gambit of problems after your surgery! Too bad you didn't check with this site at the time as there are many here who could have helped with suggestions on a couple of the practical problems you encountered. Your experience isn't the best testimonial for the surgery you received. You evidently had some unresolved internal bleeding from the surgery as the bruising and purple color shows. This could be from someone being too aggressive when putting the catheter in. This "minor" procedure takes some amount of skill, understanding, and care. Sadly, not all caregivers have all those attributes and can cause serious damage in the process.

Also a note to anyone else going through this - loose fitting pants and suspenders (no belt) are very helpful during the first period of healing. Night bag in a bucket on the floor beside the bed. I don't recall any problems showering. I think I just wore the day bag in the shower. I have heard others being given a plug to cap the catheter during a shower so a bag is not involved during a shower

I was fortunate in that the urology system I had, provided aftercare advice from a triage nurse on the phone. It was a little embarrassing telling my concerns and issues to a female on the phone but she was very factual and knowledgeable and thus very helpful in easing one's mind and assuring one that all is normal even though not fun. I have found that doctors/surgeons are just mechanics and not in customer service. After the surgery, I never saw my doctor again till my first check-up - and you are right, they don't always cover things that you find important later on.
Hope things are going better for you by now Bill. Jon.