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We went ot Cleveland Clinic yesterday

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Posted 10/25/2009 11:56 AM (GMT 0)
David, I knew you would like my nightgown story. Fortunately, John's masculinity didn't suffer from this brief foray into women's nightwear! PJs are OK but I would suggest buying a pair one size larger than your husband wears so that the PJ pants don't put any pressure on the catheter.

Jennifer, your husband will likely go home with what is called a Foley catheter and will be given 2 urine bags - one is a much larger, overnight bag that has a handle so that he can carry it around with him. When he's sitting, sleeping or in the shower, he can lay it on the floor. This bag is visible and has a handle for carrying around. The urine bag needs to be below the catheter - this allows the urine to flow down and out with no restriction. He will also be given a leg bag - a smaller version of the overnight bag that straps around the upper leg. This is a more discrete bag, and allows for him to put pants on over it - no one will see this bag or the catheter since everything is underneath the pants. Both bags need to be emptied into the toilet - it's very easy to do so don't worry about that. The surgeon also recommended applying an antibacterial ointment around the tip of the penis where the catheter exited to keep bacteria at bay. He also suggested applying the same ointment to his sutures after showering.

If your husband doesn't like to drink water, I would strongly suggest introducing it to him now as water - and plenty of it - is important during recuperation. I don't remember any restrictions on other beverages - John could drink coffee, juice, soda, milk, whatever he liked. I had a case of bottled water on hand and was constantly handing one to him to drink. John passed blood clots in his urine for 7 to 10 days after the operation so be prepared for that.

As for sexual activity: if I remember the surgical instruction sheet correctly, he could not attempt sex for 6 or 8 weeks after surgery so you won't be faced with that issue for a while. Our doctor did not send John home with ED medication - that came a few months later.

He also wasn't sent home with any anti-spasm medication for bladder contractions. He never complained about them so we didn't ask the doctor for it. Some men have these, and some don't.

One of the things John did face about 6 months after surgery was frequent urges to urinate. The doctor gave him a prescription for Vesicare but that caused heart palpitations. He discontinued using this and went on Enablex instead, which worked well. He used it for one month with success, and hasn't had to go back on it since then.

Jen, one of the hardest things I had to deal with as a wife (aside from the diagnosis) was how tired John was once he was home. My dear husband is not a good patient - he's been blessed with excellent health and has never experienced any restrictions on his body. I remember one night in particular that broke my heart. While trying to get himself into bed and get the catheter and urine bag situated properly, John started to cry because everything he did was such an effort. Any surgery knocks the heck out of you, and this operation is a big one. I didn't know what to do for him except to assure him that this would all pass. That was a hard night for me.

Hope this is all helpful ... will post more as I think of things.
Posted 10/25/2009 3:05 PM (GMT 0)
Sephie, you are such an angel! thanks for all the good information.

We got couple night shirts for my husband online last night. there are't many in local store. thanks for the idea.

our doctor told us after surgery, he will feel very tired because his body is use lots of engery to heal inside. so i am prepaired.

Well Sephie, I do have couple puzzle to solve, maybe you could help me.

1, doctor told us 6 weeks after surgery, he shouldn't lift anying heavy than 10 lbs, but he can have sex 10 days after surgery (maybe he means penil rehab, not actual intercourse?) he said after 10 days, it wont hurt to have sex (I read from here that normally shouldn't have sex in 8 weeks after surgery). we will ask this queston next time whe we see the doctor.

2, about penil rehab, doctor said he will give ed pill to star rehab after catheter is out. also i read from here that the soon doing rehab, the better. So besides those pills, what else we should doing for rehab, like pump? ved? sure we will ask doctor too but good to know now.

I will post more question when they come up.

Thanks Sephie.

Jennifer
Posted 10/25/2009 6:16 PM (GMT 0)
THANKS David!

another question is how much walk he should do after surgery?

Jennifer
Posted 10/25/2009 9:50 PM (GMT 0)
Jennifer, I agree with David that you should check with the doctor about when your husband can attempt intercourse - 10 days after surgery is way too soon in my opinion. I don't know anything about the pump or other penile rehab tools ... I'll let some of our resident experts answer that one.

John was up and walking the morning after surgery - he would slowly walk along the hospital corridor in his hospital gown. Might have been fun if I had given him my flannel nightgown to use in the hospital! As to how much walking your husband should do, I would wait to see what the surgeon has to say. The walking helps greatly with getting the bowels to work normally, and helps the body flush out fluids which increases the bladder function. But, your husband will definitely be tired from the surgery - it's a major operation and takes alot of energy to recuperate from. He won't be able to drive until the catheter is out - even after John's catheter was removed, the doctor said give it a few more days before you get behind the wheel of a car.

The no lifting of anything more than 10 pounds is very important, as David said. The incisions you see on the outside are nothing compared to what has been done inside.

Ditropan will help with any bladder spasms your husband might have. However, our urologist suggested that John not take them unless he absolutely has to as they will delay normal bowel function. Bladder spasms are not fun so if your husband needs the medication, give it to him.

Since John was very lucky in not needing his pain meds (oxycontin), I used Tylenol PM at night. It helped him fall asleep and stay asleep, which was good for both of us. A good night's sleep makes all the difference.

I just asked John whether or not he drank coffee when he first came home - he said he didn't have it for a few days because it just didn't appeal to him. Your husband should follow what his doctor tells him in this area. I do remember that John came home on clear liquids - broth, jell-o, the usual. Once he had his first bowel movement (which was the following day), I could introduce soft foods (soft boiled egg, pastina in the broth, etc.). I was told to slowly introduce "normal" foods until John was able to have a bowel movement each day. Once that happened, there were no food restrictions.

I don't know how your husband is with taking it easy, but I did have a hard time getting John to lie down during the day. He equates lying in bed with sleeping. I finally convinced him that lying down and reading or listening to music is fine - the important thing is to get off his feet and rest. Which leads me to blood in the urine - if you start seeing more blood than usual, it probably means your husband is doing too much and should rest more.

Sorry this post is a bit disjointed - I'm typing as I remember things. Sure more will follow soon. Continue asking the questions, Jennifer, and we'll answer as best we can.

Sephie (A/K/A Jo) and John
Posted 10/25/2009 9:51 PM (GMT 0)
Jennifer, remembered one other thing: John's surgeon suggested he wear briefs (underwear) rather than boxer shorts - they provide more support.

Later.
Posted 10/26/2009 12:38 PM (GMT 0)
'Thanks Sephie, good to know this recovery tips. Hope my husband will go smoothly for the surgery and revovery.

got all on my notes.

thanks so much!

Jennifer
Posted 10/26/2009 1:03 PM (GMT 0)

Jennifer,

Gool luck to you and your husband as his surgery comes nearer. It sounds like you are doing lots of prepration before hand.

A word of caution though, don't get dissapointed on the sexual side. It may not work even with the pills right away. You will have to be patient and see what happens. Some men are taking quite awhile on that front. I've been doing great overall at 2 months out from surgery.

It was very hard for me to not do anything I was used to like cutting the grass etc or lifting items. But that 10 pound rule is a good one to follow!

Take care,

Larry

Posted 10/27/2009 12:38 AM (GMT 0)
Jennifer,

I am so pleased you liked Dr. Kaouk. I honestly don't remember meeting a doctor of any specialty that gave me so much confidence. When he started talking about the layers of the prostate like an onion, and how he would separate it layer by layer until he found good tissue really encouraged me.

I also had an extra-prostatic extension. I am convinced that I would have had positive margins with some other surgeons. I attribute my good results to him.

And what a great guy he is ! His smile, his handshake,and his personality and knowledge of PC all made me forget any other opinions. He was my doctor.

As to the four surgeries a day, if anyone thinks he is the only guy in there dragging himself from room to room, not so. There are at least 2 other surgeons usually involved. When he walks in , the robot is in place, the incisions are made, and there is some preparatory work done. He sits down at a console that looks like a large video game in an arcade and starts the symphony.

Best of luck to you guys. You will find that Clevevland Ckinic will not dissappoint you.
Posted 10/27/2009 2:02 AM (GMT 0)

Jennifer,

We were on vacation, and I haven't caught up with your posts, but want to send my support to you and your husband.   Acquiring trust and peace of mind is incredibly important to the healing process, so I am glad to hear you are on your way.

Best Wishes,

Becky

Posted 10/27/2009 2:20 AM (GMT 0)
Jennifer, you sound so well prepared now. You have gotten so much good information from so many people.

I will vouch for the Ditropan if your husband were to experience bladder spasms. Most men aren't on their catheters long enough for that to become a problem, but if he does, they work well. Since I am still on an extended catheter even now, this is day 27 on this one, I take a pill in the AM and one in the PM, doesnt prevent spasms altogether, but it helps. My doctor said they mostly occur, because the bladder is one tough set of muscle, and it knows the balloon holding in the catheter is a foreign object, and it tries its best to push it through. Best description of a good spasm, is it feels like an explosion in the bladder, but there is no way to relieve the pressure. Mine last anywhere from 15 seconds to as long as two minutes. In order to relieve the pressure, urine will try to force its way under the balloon and out the penis. Mine range on the pain scale of 4-10, fortunately most of them on the 4 end. I only mention it, because I have dealt literally with hundreds of spasms in the past year, at least 6 or more a day. If a man gets one out of the clear blue and didnt know what it was, you would think he needed to be on his way to the ER. But that is not the case of course. I would rather think that he never has to deal with that.

Best of luck to the both of you, sounds like he will be in good hands with you watching over things,

David in SC
Posted 10/27/2009 12:17 PM (GMT 0)
Dr. Kaouk will most likely give Ditropan post op. I was given it in the hospital and took home a script for it .
Posted 10/27/2009 1:53 PM (GMT 0)
Jennifer,

I am so glad that things are really working out for you and your husband. I have followed your journey since your very first post on the other site. And that one came not too long after I myself began my journey.

Wow, have you and your husband come such a long way. I remember vividly the feeling that you guys are feeling now having made the decisions about the treatment and the doctor. It is truly a very serene peace isn't it?

My prayers and blessings are with you both as you take the next step. Your first posts were filled with confusion and dread now they exude confidence and hope.

Good luck and God-speed,


Sonny
Posted 10/27/2009 6:25 PM (GMT 0)
goodlife,
thanks for gave us your insight. before, my husband doubt about going away to Cleveland but now he is all happy, relax, and feel positive. My in laws are very happy that we are getting a good surgeon to do the surgery. Hope we will have a smooth surgery and a fine recovery. we will keep you posted.

Becky, I wish you and your husband had great trip. It is nice to enjoy the travel. thanks for your caring and support, we will keep everyone posted.


David in SC, thanks for explain to me how a spasm happens. I will ask doctor for the question and see what he say. By reading all these sores, bleeds, stitches, catheters in everyone's post, I almost can feel as much pain as my husband will experiencing in near future. even thought my husband is a strong individual, the day he had biopsy, he went back to work and drive home and told me just a little discomfort and never complains his soreness (i was sick and in bed couldn't help much), but still, the surgery hurts!

Sonny
Thanks so much for your encouragement and nice wishes and praying. each our steps on PC journey has you and other brothers in front of us. We are very encouraged by your surgery and recover story. Hope we will keep up and doing our best. will keep you posted.

Thanks

Jennifer
Posted 10/27/2009 9:14 PM (GMT 0)
OK, a decision has been made and scheduled. God bless you for your concern and persistence. So many of us have benefited from the support and care of our wives -- Not for then taking control, but for them understanding and standing by us as partners. Your husband is indeed lucky to go into this as part of a team.
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