Sorry to hear things aren't going as smoothely as we'd hoped. But welcome home!
What type of diversion did you get? With the orthotopic neobladder, voiding is done via the natural urethra, the internal pouch needs self-catheterization through a stoma and the ileal conduit+bag is the external diversion. Just in case you needed a quick tutorial! 8-)
I've heard to expect 6 wks to get your appetite and bowels back in the real world. Try to eat yogurt to get the bacteria level at a good place, or use pro-biotics supplements (I've heard Culterelle highly regarded). If worse comes to worse get some of those high calorie drinks like Ensure.
Keep us posted on how things go.
Wishing you all the best,
My husband's appetite was also very low. I tried snacks, like pretzels and crackers with herbal tea just to get him eating. I did this whenever we sat around or watched T.V. I also made his meals small so he could feel like he was finishing something. The oncologist nurse said those were all the right things. She also said it was impt to push yourself to eat so you gain strenght otherwise you just feel worse. I'm glad your leaking stopped. Good luck with the staples.
I found a loss of appetite, for me, was strongly linked with urine tract infection which is very common after this surgery and particularly with tubes (catheters etc) still in place. It was especially true when accompanied by a feeling of overall grottiness and listlessness and fluctuations in body temperature. It's worth having a thermometer handy as sometimes it's not easy to tell. I got the shivers so it was pretty obvious! Keep an eye on this and mention it to your healthcare folks. Can't harm. Antibiotics were pretty effective for me. But I also found that if the course was too short then the infection disappeared and then reappeared quite quickly!
Of course you also may just not be hungry and the fact that you're not that mobile may be contributing to it as you say.
The infections have never come back for me since I got rid of my catheter but were a regular occurrence when I had it in. Even though I was very strict about wiping round tubes with anticeptic wipes when doing flushes etc.
What surprises me I'm losing my appetite was better in the hospital
the past few days I’m not as hungry for 3 sittings a day.
I did do more walking at the hospital then here.
This may have something to do with it.