Physical Therapy after Neobladder to regain continence?

16 years 3 months ago #11097 by Gene Beane
Eileen,
I remember about week 6 and thought we had a green light, but some days the red light is back on, so its a tug of war with recovery, maybe its best to just have the yellow, go with caution...as you will lean back and forth for a while.
Ginger

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16 years 3 months ago #11093 by harry s
Hi Eileen - After Harry's 28 day hospital stay, all tubes were out prior to his release, but no one mentioned kegels to us until I saw a post here just prior to his follow-up appt. with his surgeon at Stanford. I guess there had been so many other issues, no one thought to mention them to us. The doctor asked if he was doing them...before I could ask about them... he said to do them several times a day and they would help with incontinence, but it will be a process, not overnight results, unfortunately :o(. No special physical therapy was mentioned to us. I'm just trying to remind Harry to do them regularly...but I admit I forget too! I think the main thing will be time and yes, for me too, patience.

Margot

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16 years 3 months ago #11082 by mikeg
one more thing - i know that i need to work on my PATIENCE!!!!!!!!!!!!!!!

eileen

Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23

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16 years 3 months ago #11081 by mikeg
hi all - thanks for the quick replies. no one can tell it like it is other than someone who has or is going through the same thing. i keep re-reading michael's pathology report saying that they removed 30 lymph nodes and all 30 were negative for cancer, and that reminds me of what my priorities should be. It's only 2 days since michael's catheter was removed - we will get through this no matter what. please keep the info coming!

eileen

Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23

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16 years 3 months ago #11075 by fearandfight
Eileen I think Mike is doing great with his recovery it takes time and patience with this disease. When I came to this board the first thing Wendy said to me was cancer changes your life forever and how true this is. I am 5 months post op with an Indiana Pouch no leakage at all but the toll this disease has taken on my life is more then I thought. I get my first 3 month checkup on 12/4 since being told I was cancer free for now so I am hoping for the best. I live by the word "Acceptance" I got this damn disease fought to get rid of the cancer and for now all I can do is make the best of my life I can accept that. Some of the things I use to do I can no longer do but I have my wife, 3 sons, and 2 great grandkids that is my blessing .Cancer sucks and we all know the aging process does also so put them both together and that ain't good but I just try and do my best. Peace, Joe ;)

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16 years 3 months ago #11074 by Dixie
Eileen,
I am a patient of Dr. Schoenberger's also. I have written to you in the past but I am a female. I can tell you my story post-op but I did have a complication so the timing of things will be different. I will tell you the best I can remember.

At Hopkins they did show me how to cath myself just in case if I had to after they removed the foley. Just to let you know I only ever cathed myself once, and that was the night I got home. I just wanted to do it to make sure I could.

I will never forget the ride home (4 hrs) after they took my foley out. I had put a pad on and it was not enough. The urine just ran out of me along with mucous. I could not control anything. I had to wear Depends at night and during the day the biggest Poise pads they make. They are special pads for urine incontience. To tell you the truth I was a little surprised I was leaking so much. I was planning on having to cath myself but thank God I didn't have to. According to stats women have the tendency to retain not leak urine.

So any way I did start PT also a few weeks after the Foley was taken out. I also went to someone that only ever had one other neobladder patient, but she was only 45 mins. away. I felt the same way as you, how much did she really know. My first visit was very strange to me also. She put a probe up my vagina with little electrodes that went on my stomach and back by my rectum. I had to do Kegels with this in so she could measure how strong of a contraction I had. Then she gave me a machine to take home to practice. It was a little strange but I did it because I really wanted control of my bladder again. I did my exercises as instructed (I think it was like 3 times a day with 3 sets of Kegels. And I had to write down all my numbers that the machine gave me each time.) I had to hold for 2 seconds and relax for 2 secs 5 x's rest for about 30 secs and then hold for 5 seconds and relax for 5 secs 5 x's. I had to do 3 sets 3 x's a day. I think I went to see her every other week.

When I was released from the hospital they put me on a antibiotic I think it was for three months. They said that it was normal protocal. After I finished them up I kept getting reoccuring bladder infections. If it was up to my PT girl at home I think she still would have me there. I was the one that had to take control of the situation and say to her I'm not getting better. I had called the Physical therapist from Hopkins that works with neobladders all the time and spoke to her about how my Physical Therapist was treating me and if it was correct. So I had to stop using the probe when I had infections and then I even stopped PT. She was the one that suggested for me to stop PT totally until I got rid of my infection. If you want I still might have her name and you could call her. Let me know. So my control got some what better but with the PT but I had a constant drip and it wouldn't stop and still had infections three months later. So I E-mailed Dr. Schoenberg and he wanted to see me. I had a fistula(where they connected the urethra to the bladder). So I had that repaired in Feb. by laprascopy. I had to go to Bayview(sister hospital) to have that done and another Dr. performed that,Dr. Wright. After that surgery they told me it would be like starting all over again with my bladder training. I also had a Foley in again for two weeks. But when they took it out I had control thank God. I guess all those Kegel exercises did help and I had no drip. I still do Kegels but forget sometimes and then I will start to leak a little bit during the day. At night I wake up around 3 or 4 to go and sometimes my pad is dry and sometimes it is slightly wet. The only time it is soaked is when I am so tired and don't wake up or if I have had a few cocktails. So, it has been a long road but it is 9 months out from the fistula repair and I just wear a pantyliner during the day just in case and at night a small pad. I got out of Depends right after my fistula was repaired. So like I said my story has a little curve in it but it ended up good. I was a little upset that I had to go back in for surgery but I am glad that is all they had to fix. After all they did a lot of reconstruction in there and I will never know if I made the fistula by trying to do to much to soon or if it was there from the start after surgery. I did try to over do afterwards to soon. So don't push to hard give your body time to heal. I hoped I answered some questions. Good Luck you should be out of Depends in a few months it just takes time.
Dixie

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