Home after Sept 20th neobladder – some challenges

[TnTalways]

Hi everyone! I finally have a moment to log on.

Tim had his neobladder surgery on Sept 20th. The surgery went well, he got the neo (yay!) and Dr. S was happy with how it went. We hit some roadblocks. He developed a high fever right away and spent the next two days in intensive care. Then, just when they were ready to move him to ward, his blood pressure soared and he went into hypertensive emergency crisis. Long nights at the hospital! But by Sept 23rd, he was finally in his room and ready to start recovery. He hit some bumps on the way….improper flushing techniques by some unfamiliar with the requirements caused some problems; an orderly bringing him to ultrasound rounded a corner too sharply and ripped out his IV (you should see the bruise!!) and some usual challenges when staying in a busy hospital. He was soooo happy to come home on Sept 30th, but we were concerned by how quickly it happened, as we expected a bit longer stay, especially given his delay in the IC unit to start.

More challenges upon leaving and arriving home. They removed his JP drain right before he was discharged and it was total Niagara Falls! They changed the dressing five times in one hour and it wasn’t stopping. But they still sent him home. I spent the next day mopping up that site continuously. Every time he moved…gush! A sneeze or cough meant ‘take cover’! Seriously, that JP site went for distance shots! It was very trying for awhile…it hampered his movements and kept soaking all his other dressings. Finally, on Wednesday, a visiting nurse put a pediatric ostomy bag over it to catch the fluid and that did the trick. No more sopping midsection! 🙂 Clever nurse. Today, it seems the river is finally drying up.

Two questions/issues I need guidance on:

1. Food. They told him to return to his regular diet but go slow (as many of you have said too). I have been giving him toast, soup, soft fruit pieces, but nothing is sitting well and he has nausea and heartburn. Tuesday night he vomited twice (colours that have no business being present in vomit). Any idea of foods that are tolerated at this stage? (Day 13)

2. Blushing question. The Foley site…at entry, is very VERY VERY sore and painful. So increasingly painful that he is reluctant to move much (and he needs to be walking more). It is really red, inflamed and looks to have an open sore at the opening. The first home nurse told us to put vaseline on it…that didn’t seem like a good idea (infection, break down of the plastic tubing, etc.). Today’s nurse suggested Canesten (that sounds even weirder). I have left two messages with the doctor’s office about it but not getting any call back. He is so miserable with it…have any of you guys experienced that and if so, any advice?

Other than that—just the new experiences of learning to flush, figuring out the bags, and trying to determine how often to change them, when to wake up in time to empty them, etc. and lack of sleep! 🙂

Thanks for all the support and good wishes. We go on Tuesday Oct 8th to get the results of the pathology. Scared but praying hard for good results! Also curious about when we start will clamping and expanding the new bladder. Long way to go yet!

[Greg]

Teresa:
Food. He will have little appetite, I expect. I tried the occasional milkshake for awhile though some people don’t like dairy at this juncture. “Ensure” or the like was suggested by the nurse (I happen to dislike the taste). Yogurt went down all right as did occasional half bananas. I lived on soup, with a water base. Ginger ale was also a friend. The doc may be able to prescribe something for both the nausea and heartburn. But take it slowly and do not worry. The appetite and ability to enjoy food will return after awhile, but it takes time.

The Foley – the bane of my existence and probably everyone else’s as well who has ever lived with one. I expect the issue could be either or both of local infection and friction combined with acidic urine. Cold clothes and frequent washing might assist. I expect the Vaseline might not be a bad idea either as both a lubricant and a shield. Make sure he is taping the catheter to his leg to avoid pulling and excess movement but leaving enough slack to avoid discomfort. They can replace the Foley if necessary; not so much the organ into which it is inserted! Again, call the doc’s office and be persistent. He is a busy guy, though that doesn’t help you much at this point.

I assume he is using the night bag when sleeping and not the leg bag. There is certainly more capacity. I was told to irrigate everything every four hours night and day and did so for seven weeks until the last cath came out (yes, seven weeks!!!). I set the alarm for the 3 a.m. changing and 7 a.m. since I was so exhausted I would have slept through them. I would set everything up in the bathroom prior to going to bed just after my 11 p.m. irrigation to minimize decision making when half asleep and expedite the procedure as much as possible. I simply rinsed and dried the daytime leg bag when I changed to the night bag and vice versa wiping both the end of the catheter and the nipple on the bag with an alcohol swab in an attempt to control bacteria.

And try to laugh a little. It’s miserable, but it does get better, much, much better. Find the humour and laugh.

Greg

[marysue]

I can’t offer any advice not having gone down this road but would like to commend you both for your bravery and tenacity. Heed Greg’s advice. Take care and keep us posted. Hugs and best wishes.

[elsie]

no advice from me either – just want to say : hang in there – like greg said – conditions will improve -patience is the key…
lynn

[Susan]

Thinking of you. Hoping for steady recovery, and the disappearance of these current difficulties. Now is the beginning of your “new” life together. My own recovery from ileal conduit surgery was completely uneventful except for a couple of days of moaning and groaning extreme nausea right after the surgery. Also wishing you get very good news on October 8th.

[Zina]

Hi Tina, Wow, what a journey you and Tim have been on! Hang in there, it does get better. With regards to the food question – what about white rice or soda crackers? I know they helped settle my stomach when I felt nauseous. Eventually, I suggest trying quinoa – if you have never tried it, it is a grain that can be substituted for rice, but is loaded with protein, so will help give Tim some extra energy and strength. If the vomiting continues, I would keep calling the doctor’s office til Tim can be seen.
As for the other question, as I am not equipped with that particular organ, I can’t give you any advice there. Other than saying that the value of a great home care nurse is priceless. Often times, they can tell you what the problem is and the best way to treat it. Conversely, sometimes an inexperienced nurse can inadvertently make things worse by they way they change the dressings or reposition the catheter. If that happens, don’t be shy about telling them when something they have done doesn’t feel right. Good Luck.

[Ieva]

We had similar issues, and this is what worked for us:
Food:
I made soups and stews. I used ground meats and grated all the vegetables. In the beginning, I also pureed everything. This made it easier for the digestive system and helped his bowels move more easily.

Drainage:
Leg bags were cumbersome for Malcolm, so he used the large night drainage bags, all the time. He wore sports pants (tear away sides) which hid the tubes, and placed the drainage bags into shopping bags, for ease of carrying and disguise when walking outside.

Flushing:
I asked for CCAC. The nurse came daily to flush the neobladder and all the tubes. Whenever the draining seemed to slowdown, I would flush the tubes to clear out the mucus. Also increasing Malcolm’s fluid intake.

Malcolm had never been sick nor had any surgery ever, before being diagnosed with bladder cancer….so no experience with pain, change, etc. Keep the questions rolling!!! We’re here!!!!

[Gord]

Good to hear from you.Good to hear that Tim got the neobladder. That is very good news, and hopefully bodes well for the news to come. Sorry that it has been a bit of a rough ride. I remember that people told me, and I also read about, various complications. It is different for each person, but few get away without any. Keep asking questions of your doctor and home nurse til you get the answers and help you need.

I took it very slowly on food, perhaps why I lost 30 lbs post surgery. I ate at the regular meal times, but very small portions and easy to digest foods – eggs were a fave, yogurt, very small portions of what the family was eating. Anything spicy, tomatoey, or smelly, turned my stomach but I never actually got sick. I used the nutrition drinks/shakes, and drank lots of water. Those intestines got all mixed up and it took a while to even have an appetite of any kind. I mostly avoided constipation, as it was hard to manage 1) with the Foley, and 2) it interfered after with voiding. Just painful too. We actually bought a toilet seat raiser at a home health store that meant I did not have to sit down as far which helped a lot. I still use stool softeners daily, and used Metamucil until just recently – both of which helped a great deal.

I too used the big bags all the time, day and night, with the tear away pants. And I used shopping bags to carry them when I went for my 3x a day walks around the block. Never had to change them (should I have, lol?), and I enjoyed sleeping thru the night mostly, as those days will pass once the catheters come out. Just try to keep the privates and the Foley as clean as you can, which may help with the discomfort. It is just not a comfortable thing at all. Good thing is that Dr S doesn’t keep them in as long as others I have heard of (ie,. Greg). He may take the Foley out this week, if not, then next. Then the Malecot Catheter a week or so after that. That is what happened with me. We never tried clamped or anything, just waited til the Foley came out and then started from there.

Keep asking questions and all of us will help where we can, but it is a rough ride these first few weeks. A wise man (Greg) told me to measure my progress in terms of weeks, not days, as there will be rough ones in there. 3 1/2 months post RC/neo surgery, I can say it does get much, much better in all areas. It’s just one of those things where there is lots to manage and get used to, and we have to put in the recovery time. Hang in there!

[Author]

Posts