My father was diagnosed with invasive bladder cancer in February 2016. He under went four rounds of chemotherapy followed by a radical cystectomy with an ileal conduit diversion. Overall, I believe the surgery and the initial weeks following the surgery went as expected. We are now running into several problems which have resulted in readmission into the hospital on several occasions. I would like to hear if others have encountered similar issues.
1. Dramatic weight loss- my father is down 52 lbs in two months (surgery was beginning of September 2016)
2. Recurrent urinary tract infections- what have you all found that has worked best in preventing UTIs. I realize this may a constant battle but I need any tips possible.
3. Dehydration- Every time my father started feeling bad, we go have lab work and the doctors always say he is dehydrate. He drinks constantly but with the new "bladder" and stoma I feel he loses more water. Tips/advice?
4. My father is beginning to get frustrated and down on his luck because he feels as though he is getting worse after the surgery. Please share your journey, hardships, and advice.
I really want to help him get though this and provide the best possible life and outcome for him. He is truly my hero and I want him to get well (or as well as he can to live a good life).
Sorry you and your family are going through hard times. I can relate as I went through some myself following my Radical Cystectomy. We have different types of diversions but there are always some things that translate no matter the diversion following RC.
I lost 40lbs following RC a lot of people have weight lose following RC surgery. The key is getting your appetite back after not eating for a while. Start slow with things that sound good to him. For me it was mac and cheese for him it maybe PBJ. Talk to a nutritionist if you can. Your Dads immune system has taken a big hit and needs to be built back up. Another key to my getting back on track with my diet was moving more and getting exercise as it helped my appitite come back and helped with my gastrointestinal system getting back to normal. Remember depression can affect appetite also.
The infections I had one after another it took time. Not only did I up my fluids I tried to infuse my diet in foods high in liquid, water melon and soup as an example. Juicing can be a big help as it give you lots of nutrients and liquid to boot. Talk to his doctors about seeing an infectious disease specialist they can be a big help with recurring infections.
Of course your Dad is getting down right now this feels like the gift that keeps on giving with no end in sight. If you look at my signature you will see I went through a bit myself. What you have to do is to see this as a journey to wellness, unfortunately it can take some twists and turns though. His immune system is beat all to heck and he is trying to get over a major surgery and chemo it will take time. If he is depressed to the place it is effecting his recovery he needs to talk to someone who can help him with it. Sometimes it takes a good sit down with your doctors to lay out the problems and come up with a course of action for them all. You can get into a loop where all the things going on are feeing each other and you have to break the cycle.
My RC is ten years behind me and it took a while but I am glad I kept trying and pushing for answers and made myself do even when I didn't feel like it. I hope this is a little help and know we are here if you need us.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society