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It all started 17 years ago. When I was 16 years old, I had a complete blockage of my urinary tract. Things had been slow, but for a teenager, I didnt want to tell anyone. Ended up in the ER. Soon thereafter I had my first DIVU (direct internal urethrotomy) in which the Urologist cut the stricture.
Again, 2 years later I had a near complete blockage followed by another DIVU. Things held up from there for about 12 years.After 12 years, I was then 31 years old, my stream had slowed and I new I was headed for a blockage. My urologist scheduled a DIVU. For the third time, the urologist went in and cut the stricture. That lasted about 2 years ago.
A few days before Christmas, 2013, I came down with a really bad UTI. After antibiotics, it immediately came back. After 3 rounds of Anti’s, I finally got rid of the UTI. At that point my urologist wanted to do another DIVU.
That was scheduled in Feb of 2014. He said that again my stricture was closed to a pinhole and he again cut it. Left the catheter in for 1 day. I had go urine flow for about 1 month. The stricture closed fast. I was straining, retaining, and my creatine levels had raised. I called the urologist back and he immediately scheduled another DIVU.
DIVU #5 was in May of this year. Again, he cut the stricture and left the cath in for 1 day. In the weeks leading up to DIVU #5, I had researched Urethroplasty and even tracked down a local doctor, Dr. Mang Chen at UPMC hospital in Pittsburgh,Pa. I saw him a week before DIVU #5 with my regular urologist. Dr. Chen said that I was a perfect candidate for Bucal Mucosa Urethroplasty but recomended that I went through with DIVU #5 to get me through to the summer when I could have the procedure.
As predicted, DIVU lasted 2 weeks before Dr. Chen had to do a dilation.
After 17 years of suffering, 5 DIVU’s and one dialation, I had BM Urethroplasty yesterday with Dr. Chen. He has done over 200 of these procedures. He studied under Dr. Santucci who is one of the pioneers in this procedure. My stricture was in the upper bubular section of the urinary tract. The incision was made in my perineum.
Surgery was done in the outpatient center of UPMC Mercy hospital in downtown Pittsburgh PA. It lasted 2.5 hours. He overlayed a 5cm section of my urinary tract. Surgery ended at 3:30pm and I was home in bed by 7:30 the same day. I will have a catheter for 3 weeks.
I am still groggy and week. As many can attest, my mouth is sore. I wouldn’t call it painful. I do get some pain in the mouth for about 10 minutes after I use the swish and spit. Ice packs work wonders for both mouth and crotch.
I have a long recovery ahead but feel the worst is over. If anyone is dealing with stricture disease, please consider this procedure. If you are anywhere near Pittsburgh, please look up Dr. Chen.Very nice doctor and very easy to talk to. https://findadoc.upmc.com/PhysicianBioQuery.aspx?EPCDID=71486&_ga=1.28008760.584348115.1403657440
Here is his website.
https://reconstructiveurology.wordpress.com/author/manglamchen/
I have heard good things about him.
Glad you had this done to get things taken care of.
All the best.Day 3, things are getting better. Mouth pain is much better. I have stitches popping out in my mouth which have kept me still eating soft foods today. Energy levels are up today too.
Incision site does not hurt. Haven’t taken any pain pills today. (still no BM though)
During a previous 10 day catheterization after a DIVU, I had the catheter come out in the middle of the night. This is is always in the back of my mind. It keeps me from moving or walking much. It’s something I need to get used too as I have another 20 days to go until this thing comes out.
Surgeon used a Statlock device. It has worked very well. I have purchased a few extras from amazon. I have taken 2 showers and this thing is holding strong.
I few points to note, I have not had any testicular swelling at all and nocturnal erections have not been terribly painful. I asked the surgeon about the testicle swelling prior and he said his patients usually don’t have that problem.
Day 8; I can’t believe its been 8 days.
Updates: Mouth; No pain at all. The swelling went away by day 4. No lingering pain. Eating normal. Over the past few days, some of the stitches have poped out. Instead of letting them drive me crazy, I used a small disinfected pair of scissors to cut the lose ends. I do a deep pocket in my mouth that I am going to have checked tomorrow by my family doc. It is were they sewed the flaps back together. Its not bleeding or hurt, but its deep and has some material in it.
Perineum; No more pain there except for where stitches jab into existing tissue. It’s tight and can feel it pull when standing up and during a BM. Still continuing to use neosporan type cream on it.
I have never felt any pain from the urinary tract. Honestly, for me, the worst part has been the mental battle I am having with the foley cath for 3 weeks. At times I feel trapped. My family and I went for a drive yesterday and it helped a lot. I was able to ride in the car with a special prostate pillow without any problems.
I have a desk job. To keep me sane, I think I may go into the office for a few hours this week. It will have been 10 days since the procedure. My doc said after the first week, I could start working, no lifting. I am finally feeling clear headed enough to function at work.
I will keep writing. Sorry to steel Ken’s blog, but it really helped me prior to the procedure to read other peoples stories.
You sound like you have everything under control. This is the hardest part…the waiting, the starting recovery.
I got through 23 days of a cath by watching the tour de France on the couch. hahahahah
It will be done soon. You will be tube free soon. I know you are counting down the days.
All the best to you. I agree about this site. It has been an incredible resource for me.
Thank you Ken.
All the best,
cThanks for the encouraging words.
To be exact, 16 days down, 7 to go.
I have now been back to work for the past two days. Dr. Chen said I could go back as soon as 1 week after if I wanted. I waited 2 weeks. I am an engineer and sit at a desk all day. I could not handle another week at home. Honestly, the mental aspect of healing has been the hardest. I don’t have any pain to speak of any more. Mouth is fully healed as well as the perineum incision. I am walking and being active. At times, the cath makes me go crazy. I want to take it out. In all honesty, other than the hot bag of pee taped to my leg, I often don’t realize I have one.
I use a prostate pillow for support. Its just a foam cushion with the center cut out. Sometimes I will lean forward and you can definitely feel the graft site. Also, I got in the car one day without my pillow and definitely felt the graft site. I am assuming that is normal and may take 6 to 8 months to fully heal that area. Hopefully that will not do any damage.
Dr. Chen assured me that the stitches used to put the urethra back together are strong and will not pull out. I still get nervous when you fell that little tingling in the urethra when you sit in a funny position.
One important note: If you are going to do this procedure, make sure you buy a few catheter secure devices. They are worth their weight in gold. I was sent home with the Bard Statlock. They swivel and hold the cath very well. I change them once a week. They do a great job supporting the cath and have allowed me to not worry as much about pulling out the cath. You can buy them from amazon or medical supply websites.
I am still tired and get very tired easily. I am trying to walk more and start rebuilding my strength. Some of this may also be from the fact that I have a very hard time sleeping with the cath. It should all be over in a week though. Can’t wait!
Oh yeah, big thanks to Ken. This site has helped me greatly.
My surgeon has his own urethroplasty website that he recommends his patients check out prior to the procedure.
https://reconstructiveurology.wordpress.com/author/manglamchen/
I told him about Ken’s site and Dr. Chen now has a link to Living with a Catheter on his.
You seems to be doing quite well and it will continue to keep getting better each day. It’s been one year since I’ve had the same procedure. My mouth healed very quickly, but I had many issues with the incision site. That area of my perineum wouldn’t completely close and my surgeon had no immediate answers and just kept reassuring me it would heal. I seriously thought I would have to put up with an open wound forever. I even went through other tests to make sure something like diabetes wasn’t slowing the healing process. The good news is that it has now completely closed and I don’t have much tenderness or pain in the area. I’ll occasionally feel some discomfort in that area, but it’s extremely moderate. My urine flow has weakened a bit over the past couple of months, but it’s still the difference between night and day prior to the urethoplasty. I’ve had follow ups every 3 months and the tests have looked looked great. My surgeon feels it will continue to be a success and this is a huge relief. It will take up to a year for you to completely recover, but the worst part will be over once the catheter is removed and you can finally urinate without any straining on a PERMANENT basis!
It has now been 3 weeks since the procedure. God and VCUG willing, the cath will come out tomorrow. I have been back to work now for 1 week. I have no mouth or perineum pain to speak of unless I sit in an awkward position. Also, keeping the cath lubed at the tip of penis is a must to keep the cath from irritating you. I have used so much tape over the past 3 weeks that my right thigh is red and sore from tearing tape, but its not that bad. A good battle wound if you will.
For those that are interested, it is not hard to hide the cath and leg bag under jeans or slacks. No one at work knows that I have one other than I walk slower than usual. Once I found a good pillow, (I suggest searching prostate pillow on Amazon) and a comfortable way to drive, I have had no problem coming back to work at a desk job. I doubt you could do a labor type job though. I still am very tired once the day is over but that should start to go away once I can start exercising.
Thanks for the encouragement and good luck to anyone reading this who is about to go through the procedure. Things get better.
The catheter is gone, the catheter is gone, the catheter is gone!
Went for VCUG today. The PA put 2 bottles of contrast into my bladder. I felt the urge to pee so she pulled the cath out. Shy bladder then kicked in. She said that it was fine for me to use the restroom in private and then immediately get scanned. I definitely got the smile when I did first go. No burning or blood or anything. Strong stream. She(attractive PA) x-rayed things and all was good. Water tight urethra.
Dr. Chen had a special X-ray machine that allowed you to stand and hold a urinal in front of you while watching multiple monitors. It was very neat.
I am released to return to normal life. No sex for another 3 weeks. Return visit in 3 months. I honestly have no pain or swelling at all now. Still tired, but exercising will help that.
I have had the same stream strength each time I had a DIVU. My skeptical side is having a hard time not thinking about how long until things tighten up again. I guess only time will show me that things are permanent.
What a crazy but worthwhile experience!
Yay! Great to hear that you are tube-free.
All the best for your recovery. You will start to feel better faster now.
I remember this part.
Take care.
cCongratulations on making it to tube-free! I totally understand your worry about recurrence. After living with symptoms for a decade and having one failed DVIU and one dilation over the past 8 years before my urethroplasty in February, I keep subconsciously waiting for the pain or blood or low-flow to come back — only to be delighted in how well everything works now, every single time. I hope you experience the same night-and-day change.
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