August 3, 2017 at 9:09 am #1442
Had my surgery yesterday and they tell me it was successful.
Pain so far is not too bad. My mouth is pretty minimal. They did not stitch the inside of my mouth. The crotch are is more sore and I’ve continued to ask regularly for the pain medicine.
I’m a needle phobic and that part has been terrible.
I’m supposed to get up today so I’ll post after that.
GregAugust 3, 2017 at 10:43 am #1443
That’s great news. You actually get sort of used to the shots. I had to have heparin shots every 8 hours for two weeks, and while they were never fun, they weren’t a big deal after a while.
My surgeon never stitches the mouth. Studies show that there’s far less pain and tightness when they just leave it alone.
I go in for my urethrostomy on the 28th, where they’ll re-route my urethra to the perinium.
ClaytonAugust 3, 2017 at 1:45 pm #1444
He reroute was my surgeons second choice. I am so glad this is over and the healing can begin. Other than here I don’t know you but I was/am sending positive energy your way. It was super helpful knowing someone else understood what was going on.
The other wrinkle I didn’t expect was they put a tube in the incision that has to come out before I go home. They say it’ll be quick but I’ve asked for something to relax before they do. All this makes the Suprapubic seem like a walk in the park.
I’m sorry you got delayed but just having a plan will be some relief.
Today’s milestone is walking!August 3, 2017 at 7:47 pm #1445
I had a drain tube for my last surgery, and was dreading the day it came out. It was completely painless though, since the nerves are kind of still in shock when they do it. It turned out to be the easiest part of the whole ordeal. You can always ask for something like midazolam though. It’s a benzo that really relaxes you.
Just remember, everyday should be better than the last.
August 4, 2017 at 1:08 pm #1447
- This reply was modified 6 years, 1 month ago by Clayton.
You were right tube was not too bad. I wimped out and took a little shot of something.
Couple hours and I head home. 150 mile drive with my wife driving. That’s the other reason I took the chill mods. 🙂
Looking forward to sleeping in my quiet bed.
Keep us informed on your progress too.
GregAugust 5, 2017 at 3:34 pm #1449
I made it home and in bed. Pain is not bad. I’m trying to avoid the pain medicine as I am fairly constipated. That is the worst right now. Overall if this is a success it will be well worth it.
Any suggestions on how to help with the constipatiion? I’m taking the stool softener they gave me and tying to stay hydrated.
GregAugust 5, 2017 at 7:08 pm #1450
I had a lot of trouble with that after my last surgery. As long as I was on painkillers I would have to take docusate (two pills twice a day), and Miralax at night. Both of them are really gentle and won’t likely send you running to the bathroom. If you need something else to get things moving try either senna or milk of magnesia. They irritate the lining of your intestines, which do the job better, but can cause some urgency too.
I’m glad to hear the pain isn’t too bad. Mine will mostly be the incision and possibly my cheek if they need a little tissue to repair the urethra at the beginning of the bulbar junction.
Don’t be too surprised if you start feeling some strange feelings around the urethra over the next several days or weeks. Discomfort and possibly itching are actually healthy signs that the nerves are growing back. It’s something that’s common with any surgery, but it’s rare to find a surgeon that warns you about it.
Keep us posted,
ClaytonAugust 5, 2017 at 11:27 pm #1451
Thanks Clayton. I got some miralax and hopefully it will help. I feel decent for all I have been through. The Cleveland clinic was great and my surgeon was top notch. It was an amazing thing to see her walk in the OR and take command. I was nervous as heck and she was so caring and concerned. It really made me relax. She had everything under control and everyone in the room including me knew it. That’s what you want in sowmthing like this.
Day one at home was good. Each day should be better.
GregAugust 8, 2017 at 8:22 pm #1452
6 days in and all is going pretty well. Still a bit of soreness in my perineum, but nothing Tylenol doesn’t handle. I’ve not taken any narcotic meds since I left the hospital so the constipation has resolved itself. I’ve stopped the stool softener to see if I need it. The mouth graft area has been almost painless from the beginning. I was most concerned about this and it was a non issue for me.
The big drag for me right now is setting or the lack of. My doctor recommended none for the first two weeks nothing. Either lay or stand. Slouching in a chair or car seat if needed but to be avoided.
Looking forward to getting the tubes out and being normal for once.
GregAugust 9, 2017 at 3:33 am #1453
Glad to hear things are going well. I know how you feel about not being able to sit. After my last surgery my leg swells up horribly if I sit for long, so I either spend my time in bed or walking around, since standing for more than a few minutes causes problems too.
How has walking been after your surgery?
ClaytonAugust 9, 2017 at 1:47 pm #1454
Walking is not too bad. I am trying to increase it everyday. I live in an old house with lots of stairs. They are a little bit of a challenge. I can definitely feel the incision, but it doesn’t hurt, just a little discomfort. I really don’t have much pain tolerance, so the fact that I am managing with Tylenol is a good indication. If I had known last week how it would turn out, I would have been way less stressed. I’m trying to walk more each day. I feel fairly strong, but I do notice I still tire pretty quickly. With the minimal activity I get it is pretty telling. I am normally a 6-7 hours a night sleeper when working. There is no way normally I could sleep 8-10 hours. My body is talking to me and I am trying to listen.
You were spot on about the weird twinges and itchy almost vibration like feelings in the incision area. I am also starting to get some fairly uncomfortable night erections. Years ago when I had a dilation with an indwelling catheter for 4 weeks, I remember waking to painful erections. Thankfully they go away fairly quickly, but looking froward to having the catheter out.
The graft area is healing well. It still feels weird with my tongue and a little sore when I eat. Again if I had known how little it would hurt…
I passed my week mark today. Two weeks from tomorrow I go for catheter removals and VCUG. This reminds me of when I had laser eye surgery. I live so long with glasses and contacts that it was hard to imagine seeing like normal people. I feel the same way about urinating normally. I cannot remember what it is like to do it normally. I hope to be surprised.
So when do you go for your procedure?August 9, 2017 at 7:06 pm #1455
I go in on the 28th for my surgery. Hopefully it’ll only be an overnight stay, and a catheter for a few days until the incision strengthens some.
The catheter certainly doesn’t help the painful erections, but they would probably happen even if it weren’t there. The area is still fairly traumatized, and they’re cutting through the same muscle that makes an erection possible. You might also find that the erection changes some temporarily. It might curve a little, usually down, the skin might feel overly tight, the head might remain somewhat soft, and the overall length might be shortened by an inch or so. Those are all normal symptoms that may or may not happen, but they do go away in time. It might be a few weeks, or it might be six months, but it does goes away.
It’s really great to hear things are going so smoothly.
ClaytonAugust 10, 2017 at 3:36 am #1456SteveParticipant
I am scheduled for surgery on the 12th of September. Mine is in the membranous area. I had prostate cancer with radiation treatment 9 years ago. For the last 3 years I have been using intermittent catheters. For the past 3 months I have had a super pubic catheter. Please both of you continue to report on this site. You are helping me and others to get a grip on this treatment. Thanks again.
SteveAugust 10, 2017 at 3:59 pm #1457
Glad I could be of help. Clayton’s post have been helpful to me and very informative.
I went down the self cath path several years back. It was scary and uncomfortable. I’m told urethroplasty is the gold standard and the path to normal. I’m glad I did it.
Like you I’ve been living with a Suprapubic since early may. Ken’s site has been a treasure trove of ideas and support. It’s hard to explain to anyone else what we are going through and being able to interact with others like us is great.
I plan to keep up with the reports here and if you have questions, I would be happy to share my experience.
GregAugust 17, 2017 at 6:41 pm #1462SteveParticipant
We have had family visitors for the past week. Sorry I did not respond to your post sooner. Thank you very much. Wondering how you and Clayton are doing. Clayton’s surgery date is getting real close. My surgery date is also getting closer. I would like to hear from you both. Did you have pain from the super public catheter? Mine is very sensitive when I move it. Definitely looking forward to my surgery.
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