July 16, 2017 at 11:36 pm #1392
been reading here as I wait for my surgery. Lots of good information and a great thanks to Ken for doing this and those that have posted their experiences. It has been a wealth of information for me. Knowledge is power.
I have a 3CM stricture that was treated with a urethrotomy and self cathing aprox 17 years ago. It came back maybe 5 years or so ago and being a middle aged male with an active schedule found it very easy to pretend there was not a problem. I also stopped following up with my local Urologist 1 or 2 years in. I stopped drinking fluids after 6-7 in the evenings, used and abused NSAID’s and just gritted through it. Early May was working away from home (I do corporate training) I taught class on monday, remember feeling bad after lunch and told I was acting a little weird late in the afternoon. I assumed I had eaten something bad and went to the hotel to sleep it off. I apparently canceled my class for the next day and told my wife I was sleeping the day was at the hotel. That was tuesday morning. Next recollection I have is being woken from a medically induced coma on friday morning with my family all there (200 miles from home). As a result of the stricture I had been slowly retaining urine and my ammonia levels were out the roof. I am told 45 or so is high. Mine was 600+. I also had a lactic acid level of 9.9 and someone told me 10 can be lethal. I had a supra pubic catheter and told I would need to see a surgeon to correct the issue.
Since then, I have been slowly healing, letting my enlarged bladder rest and arranged to have a surgery at the Cleveland Clinic with a Urethrotomy and BMG.
I have also endured two cath changes that resulted UTI/Kidney infections and several quick med or ER visits. I had my cath changed last thursday and started feeling bad friday morning. My urologist gave me some Cipro to use in case. I kept getting worse, was unable to get out of bed yesterday (back pain, fever and nausea) and kept hoping I would turn the corner. Today I just could not take it anymore and went the ER. A bag of IV antibiotic, another script for Cipro and I am home. I feel a little better. Fever is down a little and pain is better.
Well I just wanted to say hello, keep reading here and will certainly ask some questions!
gregJuly 21, 2017 at 4:07 am #1418
I’ve had a few catheter changes myself, along with a cystoscopy and urethrogram. After almost all of them I’ve ended up with an infection. Now I just routinely take Cipro or Bactrim for a couple of days afterward. So far it seems to do the trick. My surgeon said she would give me antibiotics after the surgery for as long as I have a catheter in, which is supposed to be three weeks.
What were your changes like? My first one was three days after the surgery because the catheter was completely clogged with blood clots. That was horrible, especially since the hole was fresh and they increased the catheter size by two. The next one was also painful, the one after that was painless, and the last one was somewhat painful. I’m not sure if it’s the doctor or nurse doing it, or what might make a difference.July 21, 2017 at 3:14 pm #1419
They upsized me the first time too and it was pretty rough. My bladder had spasms for a day and it felt like I was going to urinate normally (not possible with my stricture) at any given moment. Very disconcerting. Second time around it was little less painful but still got a UTI. Like you, anytime they fool with something I get sick. The Urethrogram put me in the ER 4 days later.
I have had the same nurse do it both times. She is good, but I don’t think there is anything she can do different. I think it is something you have to deal with. The antibiotics make me tired and a little nauseous at times. I will look forward to getting off of them.
I have a friend who is paraplegic and he went from a normal cath to SP and says it is much better. He tells me he had issues with infections early on but it has gotten better. Luckily I will lose mine in a month or so, if all goes well with the Urethroplasty.
Good luck with your issues and thanks for letting me know I am not alone in this new world I have entered. There are days it still seems like a bad dream I can’t wake up from.July 22, 2017 at 2:45 am #1421
My surgeon is removing the suprapubic during the surgery, so I’ll be left with only the urethral for three weeks until my urethrogram. I guess it will be nice to be able to wear pants like a normal person again. Right now the tube is directly on the belt line.
I know what you mean about everything seeming like a bad dream. I lost my sister last year to cancer, and was then diagnosed with a different cancer myself a few months later. Two surgeries and 25 radiation treatments later, and I’m going in for this. At least I’m used to incisions and swelled genitals by now. Because my surgery was so incredibly long, and because of the trauma of the stricture, they badly injured everything down there. My scrotum was the size of an orange, my penis was horribly enlarged, and the head of my penis was completely obscured by a massive blister that ruptured. Fortunately that’s not a side-effect for this surgery. The good news is that after several months of healing, everything has returned to normal, except for the stricture obviously. It’s amazing how our bodies can recover.July 22, 2017 at 12:48 pm #1422
Wow it seems like you have been through a lot. I am sure it will get better.
I get the loss of a family member. My mom was buried the weekend before all this happened to me. I never really got the chance to grieve for her, before this was all thrust on me. My poor family is dealing with both.
I am hoping for a speedy recovery for both of us.
I agree it will be nice to get back to normal. I miss sleeping in whatever position I want. Luckily with shorts, the leg bad is manageable, but when working I have to wear long pants and that is more of a problem. I travel a lot for work and have to stop every couple hours to empty my bag. I used to drive for 4 hours straight.
The icing on the cake for me is an attack of gout that has lasted for 4 weeks. I have suffered on and off with it over the years. I’ve finally had to go on meds for that since it won’t clear up. My last bout with the blockage did some damage to my left kidney and so I can’t take NSAID’s anymore. They gave me steroids which made me sick and I passed out once at work. I’m on nothing but the gout meds now and just gritting through it. My Dad tried to tell me that getting old was not for sissies!
gregJuly 23, 2017 at 3:29 am #1423
It sounds like both of us have gone through hell lately.
Do you live near the Cleveland Clinic? I’m pretty fortunate to live near a top urethroplasty hospital, but I’ve read about people travelling long distances to get help.
ClaytonJuly 23, 2017 at 12:44 pm #1424
I live in West Virginia about 2.5 hours south of Cleveland clinic so it is not too bad of a trip. I go up next Monday for my pre-op interview, tests etc. We are getting a room there and my wife is staying though my surgery. They have a shuttle to take her back and forth to the hospital.
The town I live in is just too small to even consider having it done here. The local urologist has done some procedures and has been trained, but he told me that if it were his issue he would go to Cleveland or Mayo. The Mayo clinic is where my work is based out of, so I have some support there, but I would have to fly there. Plan is to have the surgery on Wednesday and tentatively drive home Friday morning if all goes well.
I feel a little odd this weekend. I know that I have to wind down my work, get some home issues squared away and also get my self setup for coming home after the surgery. I know it is my nerves. I work from home when I am not traveling so this week I have purposely scheduled mostly to be home. I have one day trip to a customer and otherwise I will be here.
thanks for asking and keeping this conversation going. My family is great but they don’t understand what is going through my mind right now. I am pretty sure you get it. I hope all goes well for you, and this week before is uneventful for you.
July 23, 2017 at 11:57 pm #1426
- This reply was modified 6 years, 2 months ago by wentzel.
I’m single, so my mom is staying at the hospital with me. They have a spare bed in the hospital rooms just for family. The doctor said I should be there less than 24 hours, so I should be home early the next day. It’s about a 2 hour drive to Seattle from my house.
The pre-surgery nerves are the worst. You never know whether to trust the information people post, because some people are trying to be encouraging by leaving out the bad stuff, or they make a huge deal out of nothing because they’ve never had to deal with serious medical issues before. It’s all about perspective. The people on this site seem to be pretty honest about things.
Before my last surgery it felt like I was preparing for a long prison sentence. In all honesty, it wasn’t far from the truth. Because of the amount of tissue removed, I was completely bedridden for over a week, and at about two months I had to learn how to walk again. I was glad to hear that they want me up and walking soon after this surgery. I do construction for a living, so I’m looking forward to earning a paycheck once again after I heal.
I hope all goes well for you this week. Try not to get too stressed out.
ClaytonJuly 25, 2017 at 12:00 am #1427
thanks! I have to finish work this week so that will keep me distracted.
I agree this site seems pretty good about calling it like it is instead of sugar coating it.
I am supposed to stay at the hospital two nights. It sounds like they want me up and moving as soon as I can. I am sure I won’t agree at the time, but it is for the best. I am hopeful that I can be fairly functional quickly.
likewise hope all goes well for you.
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