-
six weeks post op
Hello all,
sorry I have not been on lately trying to adjust to new way of life. Had my 6 week post op yesterday. Doc says all looks good I still have some pain in lower abdomin but Doc says he is not worried about it because he had to do so much (RC with Indiana pouch, removed 22 lymph nodes and surrounding tissue, and scrapped the whole vaginal track to remove all scar tissue)he feels it could be a couple more months before i am pain free. He would only allow me to go about 2 hours during the day and 3-4 at night between catherizations until yesterday now he wants me to get on the scedule i was given from the stoma nurse so i am now going to try to go 3 hours this week 4 next and so on. He thinks that in a month i should be able to stop setting alarm at night and possibly go all night with out catherization. Does this sound realistic to others out there with an Indiana pouch.
I am really starting to feel much better and the pouch (Named him Indy)works really well he does get alittle testy at times. Feels like he trys to push out cath, and sometimes is very difficult to drain (lots of mucus doc did not want me irrigating every day felt it would be too much pressure on it but as of yesterday wants me to do it once a day). Last night i was able to go 4 hours and woke up on my own with out alarm feeling pressure letting me know to drain. As of now I am really happy with my decision to do the indiana pouch.
I wanted to thank everyone on this site for all the information, support and tips. I really feel that all the little pre and post op tips that you all gave me really have helped in a speedy recovery. Yes it has been a long hard road but i really think that it is all going to be great.
I hope everyone has a great Christmas and New year. Flo
-
6 Replies
-
Flo..i don’t drink extensively either and my average at 4 hrs is about 250cc’s to 350cc’s depending on who knows? My largest volume is overnight and my bladder holds 600cc’s easily. So i think you’re right on schedule. Sometimes you have to swish the catheter around a bit as mucus will plug it up..just gently push up and down and see if you don’t find more. Sometimes the pouch plays tricks on you and finds hiding places. Playful little guy huh?
But if your pouch is spasming cath it…i’ve had times when i’ve drunk tea which acts like a diuretic and had to cath at 2 hrs…but it will tell you when to empty..at least mine does. Try going the 3 hrs and then the 4…it will get used to it.
Drink what you normally drink…if you do what the nurses tell you and drink 8 8 oz of water a day plus all the other liquids you’ll never get it trained.
you’re doing good
pat -
WOW 700cc that is alot and sounds very painful i would have freaked out i am 2 hours from the hospital where i had surgery not sure i would want to go to local hospital to let them try, the most i have gotten out is 300cc and i am 6 weeks out I am sure alot of it is i dont drink as much as i should so maybe dont produce as much. I really want to push the size because i read that once you get to 4 months that is about the size it will stay. I am at 3 hours and even waiting 3 and half I only get about 200cc i am going to try to drink more this weeks and hopefully by increasing input i can increase out put one of the things i did not ask doc is because i am trying to stretch Indy do i allow the full tight feeling and push till the time i need to cath as long as it is not too painful?
-
i have a latex allergy so all my caths are non-latex…but i use the soft one as back up….and a Kendall Dover Rob-nel 14″ french 16″length as my main one..thats the one the hospital uses. Its more rigid. Just nice to have a back up. I was only home 2 weeks when i could not get my cath in…i was standing on my head and trying every position you could think of…i think sometimes the bowel gets in the way..my theory only. It was spasming like crazy so i headed to the hospital with caths in hand and a mayonaisse jar and just as we pulled into the parking lot i got the bugger in there..700cc’s…….thought i was going to die.
lesson learned…get a back up!! But then again maybe i’m the only person in the entire universe to have this happen…figures.
pat -
Pat,
What size cath do you normally use? Right now i use a the soft 14fr 16 long, I guess the Hollister peeps would know what to get for a back up. I am with you no one ever told me i needed a back up. and just as a side not the People at hollister are great they sent me three boxes of samples they would send out a box and call in a couple of days to check to make sure i got the full order from my supplier and if not they would send out another box so i would not have to wash caths. They did that until i got my full order They were wonderful.
Right now i do not have any urine leakage from Indy only a small amount of mucus nothing major. He really is working well.
It is nice to know that that heavy feeling i have in my lower abdominal/pelvic region is not totally abnormal. And nice to know it will probably subside.
-
Hi Flo…sounds like you’re doing great. Indy is still confused…like Hey i’m a bowel what is this?…just give him some time..he’ll like his new role. I irrigated once a day but only used 30cc’s to break up mucus which there was plenty for about 3 months. Training was a pain with much deprived sleep until i got to that 4hr mark. It actually took me almost a year to get to a full nights sleep..meaning 8 hrs and that also meant not drinking anything much after dinner. I had pain after but not enough that a tylenol didn’t help it…didn’t have to do the heavy stuff and certainly didn’t want the constipation that comes with it. I did however feel like i was carrying a bowling ball between my legs for some time…wasn’t sure if that was from the hysterectomy or the cystectomy but that subsided in time.
In time you will be very happy with “Indy”…no embarassing leakage when you laugh or sneeze…certainly no prolapsed bladder…all good. If you leak a little in the beginning from the stoma thats normal..its just the mucus pushing out the urine.
Catheters can be tricky…and i’m 8 yrs out and sometimes my normal cath feels like it has super glue on it and its not going anywhere. I pull it out and then use my second softer cath which is a coloplast 14″french 16 long..that one always finds its way in. I learned that lesson the hard way early on when one night i could not get in…no one told me to have a back up cath. So you might contact Hollister to have them send you some samples..they’re extremely helpful.
continued success….Pat -
Hello Flo… So good to hear from you and that your recovery is going really well. Sounds like you and Indy are fast becoming friends and I hope he continues to behave just like he should. Thanks for the holiday wishes and I wish you and your family the same.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TNSign In to reply.
