I made it!

[wentzel]

Clayton

thanks for the encouragement. It is a little frustrating and I think I set my expectations a little high. I am going to try to relax this weekend, maybe do some walking and see what happens.

Please let me know how your surgery turns out Monday. I am wishing the best for you.

greg

[wentzel]

So I am still not able to naturally release my bladder. My doctors office tells me that this happens and it will take some time to get my over extended and then non-used bladder to recover. I am walking around with a plug in my suprapubic catheter and my regular foley is gone. I am to attempt to urinate normally if the urge hits me, or every 4 hours. I have been able to pass a little every so often while showering but not a real stream. If it doesn’t resolve itself then plan b is for me to have the suprapubic removed and self catheterize as needed. She said this sometimes helps to work the sphincter and get things back to normal.

I am a little disappointed, but trying to keep positive. I went through a fairly rough surgery, have a chunk of skin in my mouth missing and a fairly sore crotch. If it works I am certain it was worth it, but today it seems less than certain. Hopefully it will resolve.

greg

[Steve]

Greg,
I am truly sorry that you are not going as hoped. I am sure you will go on your own. There was a point when I was using catheters that I started to go on my own. It lasted for over a year. The stream in the beginning was ok but grew smaller as my stricture got tighter. During that time I did not use caths. Just give it time.

Steve

[wentzel]

Steve

thanks for the kind words. I guess I just need to be patient. I want this to be behind me and normal for once.

greg

[wentzel]

Well I spoke with my doctors office today and they are going to set me up with some bladder testing to see if they can ascertain why I am still not able to void. I have had a few dribbling episodes but nothing serious for a week now. Hopefully they can figure something out. I plan to go back to work this coming week and will manage with the suprapubic plugged and draining it every 4 hours or so.

greg

[Steve]

Greg,

In May I had a bladder pressure test done by my surgeon’s nurse. The test I had used a very small catheter (about 12 fr) that was hooked up to a machine. They filled my bladder with sterile water, and checked for pressure. At the same time the water was coming out my penis around the catheter. They did this a few times, then really filled bladder. A few minutes later I start to pee a narrow flow until my bladder was empty.

My doctor had told me prior to the test he wanted to make sure that my bladder functioned ok prior to my surgery. The way he explained it, is your bladder when full squeezes and pushes the urine out forcing open your upper (bladder) valve then your lower valve. He told me sometimes the bladder gets lazy.

By using the super pubic cath and not letting you bladder fill may make your bladder even more lazy. In the past, I would let my bladder fill until it hurt or I would pass urine. If it got to bad I would use a intermittent cath. Then I would start to go on my own for a day or two.

Work on squeezing you bladder.

As a last thought, maybe the super public tube might be blocking the normal exit from your bladder or you could have a sediment stone that developed since your bladder does not drain at the lowest spot with a super public tube.

Tomorrow I am having a cat scan for stones prior to my operation on Sept 12. I have had two large stones in the past when I had permanent caths. The last one was removed last October.

I am hoping for the best for you.

Stay in touch.

Steve

[Steve]

Greg,

I just thought of something else. If I remember correct, you said that after the Doc removed the cath you did pee a stream but it stopped. When I had stones, I would start to pee and then it would stop. The stone slid into my opening. When I used a intermittent cath I would push the stone back up and would drain through the cath. Next time I would go on my own and then stop. The stone slid back into my urethra.

Just a thought,
Steve

[wentzel]

Steve
thanks for all the information. I am wondering if you might be on to something regarding the stones? I have been able to dribble some from time to time, but since the catheter was removed I was only able to start a stream the very first time after. I will certainly ask them about this. thanks I appreciate it.

I guess it is also possible that the SP catheter is blocking me also? I just know that something is not right. I can fill up and get the urge but nothing happens. Hopefully next week when I go back up to the hospital they can figure something out. I feel like I am fighting a war on two sides. I want this to work and at the same time my family is very concerned and I am juggling keeping their worries at bay too.

I will let you know what I find out.

[Clayton]

Greg,
Sorry to hear that things still haven’t improved. My surgeon warned me before the catheter removal that it was a possibility that I wouldn’t be able to go. She said it usually doesn’t happen, but certainly can. I asked what’s done about it, and she said they replace the catheter and usually just wait until everything comes back. Pretty much exactly what they’ve done with you. I’m glad they’re running tests too, for peace of mind if nothing else.

Do you remember how long your swelling lasted? I’m on post-op day 4, and it’s rather bothersome to walk any distance.

Clayton

[wentzel]

Clayton

The swelling was only bad for the first week or so. I used an ice pack at first. It seemed to help some. Also switching to tighter underwear was really helpful. My surgeon advised me not to use a jock strap. I am a boxer guy but have converted to the sport boxers. They seem to help keep a little pressure on things.

It will be a month for me Wednesday and I still have lingering scrotal sensitivity. Not bad, but definitely there. Feels like pins and needles or stretching. There is also a general ache in my perineum. Nothing terrible but still there. I can tell it is improving though. Sitting on a hard surface is still a challenge.

Walking at first was tough. I was on a urology floor at the hospital and noticed the guys all walking with a spread leg approach. Again the underwear was very helpful to keep things from dangling and swinging. I’ve an old house and had to manage 2 flights of stairs. Taking my time and not overdoing it at first was important. It all came back gradually and improved every day for me. Tylenol and your suggestion about the miralax helped a lot. I did not use the narcotics at all.

I’m sure things will improve for you quickly.

Greg

[wentzel]

So I am back to another UTI. Because I am still living with the suprapubic, it seems to be an ongoing thing. More cipro.

I talked with my doctor’s nurse today and they are trying to get me scheduled for some tests to see how well my bladder performs and possibly a scope if the bladder test doesn’t show anything. I asked about the possibility of bladder stones or blockage caused by the catheter and they did not think that was it. I am having my local Urologist change my catheter this week and will ask him about that and if he would be willing to send me for an X-ray or cat scan.

Steve hope you made it through the storms and can get your surgery rescheduled soon.

Clayton hopefully you are progressing well.

greg

[Steve]

Greg,
We made it through Erma. Been on road and homeless for 4 days. Had to cancel my surgery. No planes. We are now at a condo in Alabama. A cousin lent it to us. Will be going home in about a week.

I am finally getting used to the Super Public. Had only one infection in 4 months. Treated cipro. Hope you are doing well and they find why you can’t pee.

How is Clayton doing?

Steve

[Clayton]

Greg,
I certainly don’t miss the UTIs. I got so that I wouldn’t even mention them to my doctor. I’d just take a week of Cipro and be done with it. I found that taking it for a couple of days after a change helped a lot.

I hope everything goes well with your bladder test. If it is nerves, I wouldn’t think it would be anything but temporary, since your surgery shouldn’t have gone near them to do any damage.

Steve,
I’m sorry to hear about the chaos this storm has caused you and your family. I was thinking about you when I read the news reports.

I’m doing good, better each day. Walking is getting easier, especially the last day or two. The stitches are starting to fall out, and there’s virtually no weeping from the incisions. The most uncomfortable thing now is my scrotum. It’s not horribly painful, in fact I don’t take anything for the pain, but it’s annoying. Any idea when they might reschedule you?

Clayton

[wentzel]

Clayton

been a bad week. I have been taking the antibiotics and generally not feeling great. I was scheduled thursday to have the suprapubic changed. Good thing was being on the antibiotics. All the other times I ended up in the ER by the weekend. Luckily not this time. I am feeling ok.

Bad thing was the change was terrible. I had some terrible spasms while she changed it and they continued after going home. I have also still not been able to urinate normally and on top of that I began to seep bright red blood out my penis. Not a lot, but enough to concern us. I spoke with the local nurse and she could not really explain since they did not do anything on that side of the sphincters. I don’t know if the nurse pushed a little too far initially and caused the bleeding or ???. The suprapubic is draining fine, so it is inserted correctly. I am thinking my theory about too far is the likely cause. I am just glad she did not try to inflate the balloon while inside the urethra. Or maybe she did, but I think that would have been painful?

I’m back to Cleveland on 10/6 to do Neurological tests and likely a scope to see what is going on. Not pleased about that but I need to get some closure.

I am glad you are doing well and hopefully Steve gets rescheduled and home. My boss lives close to Lakeland Florida and talked with him yesterday. He said his damage was very minimal and everything was cleaned up.

greg

[Clayton]

I’m sorry to hear about your week. Taking oxybutynin a couple of hours before my changes helped a lot, but sometimes they were still painful for some reason.

The blood makes me wonder if you might have a stone inside of your urethra, and perhaps the bladder spasms caused it to get pushed further down. I would refrain from urinating until the doctor looks at everything, but be sure to let their office know about the blood.

Clayton

[Author]

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