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8 weeks and gush-gush. Why can't he be dry?

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Posted 4/21/2008 3:09 PM (GMT -8)
 We are getting so discouraged. Hubby is eight weeks post surgery and no progress with incontinence. How can this be? He is dry sitting, sleeping and standing but one step gush,gush. We went to a University hospital in our area and chose the top surgeon at the facility. Husband did need blood transfusion. Also, was the unlucky one to have a sepsis infection after biopsy. In the ICU for 5 days. So why can't he get a break?  This is a previous very active man. Golf, softball, hiking, outdoorsman etc. His life has stoped now. He suffers from pressure, burning and very bad rash if he moves at all.  Where is the quality of life? Sorry for the ramble, but we are so discouraged.  Alternative treatment for "us" drippers does not seem very successful and more surgery-ugh!  Going to urologist for a "scope" on Wednesday. Don't imagine much help there but will post the results. Any encouragement out there? Thanks, Nancy 
Posted 4/21/2008 3:29 PM (GMT -8)

Nancy,

How many pads a day now?  How many did he start with?  You said he is dry standing, sitting and sleeping, so that sounds like a good start to me.

Within four weeks of my surgery, I had an inguinal hernia and an infected testicle....things happen...we just need to deal with them as best we can when they do.

I am still incontinent 5 months post surgery.  Was at 12 pads a day initially, down to 5 or 6 within 3 or 4 weeks, then 3 to 4 a few weeks later, now 1 pad the past 2 months (actually just a few drips a day now).

I read an article that stated the average time to continence is 12 weeks for those doing Kegel exercises and 16 weeks for those not doing them.  Some recover much quicker, others much slower, some not at all.

Where is the burning and the rash when he walks?  I have not heard of those symptoms related to walking, although some have burning during urination when there is an infection present.  You might want to report those symptoms to his urologist if you have not done so already.

Hang in there and best of luck with your visit to the doc this week.

DanMan

Posted 4/21/2008 5:00 PM (GMT -8)
Thanks for your reply Danman Bob. The bladder pressure is constant and the burning/stinging present when he is sitting. When he walks,he is always dripping, or gushing, so the burning is not present. He thinks the stinging/burning is from urine sitting in the urinary track. If he tries drinking copious amounts of water to help ease the burning, then it is go, go ,go-gush, gush, gush. He is trying to do kegels and does them when urinating and even tried Stan's cup method. Stan's method did not help and he just ended up with a sore back and thighs. We are going to ask about biofeed back classes. There seems to be no control at all when walking. His rash is on his scrotum and comes from exposure to the least bit of urine. He has tied various ointments and creams and nothing seems to help. We checked for infection and that does not seem to be the cause. He is so sedintary that it is hard to judge how many pads he would use if at normal activity level but when walking goes through pads quickly.
Posted 4/21/2008 5:02 PM (GMT -8)
oops, didn't mean to send that yet. Thanks for the support Danman, it is so encouraging to get the support of the members on this board, especially when having a "down day".
Posted 4/21/2008 6:01 PM (GMT -8)

Unless he is in pain, I would suggest that he walk at least a mile...more if feasible....every day.....gush or no gush.  Sitting around, unless he really has to do so, is not going to help him get better.

I used Boudreaux's Butt Paste for scrotal irritation due to frequent urine contact.

Sometimes, even now, I can feel a drop or two of urine in the urethra and it feels uncomfortable...but not burning in my case.

Sorry that I cannot be of more assistance.

DanMan


Posted 4/21/2008 8:35 PM (GMT -8)
    Hey Nancy,  Your only 8 weeks.  Try not to panic.  Believe me....I know.....Check out "KW's Journey" a page or so back.  I do not ask you to read this to scare you.  Just know you are not alone.  I know it can be hard.  But he can still have an active life.  Just don't give up.

    Good Luck,  KW

Posted 4/22/2008 4:56 AM (GMT -8)
Nancy - do read KW's journey. He's remained upbeat in spite of everything. And you can, too. We go into this knowing about the gushing, but when it actually happens afterward, it becomes a whole new ballgame. Many of us completely understand what you're going through.

It's way too soon to become frustrated; while you read about some becoming dry within days, there are simply going to be others who have to endure a little longer. For us it was months and, then, one day we went from 6 pads to 2, then just one. For us, that's good enough to avoid any surgery and we hope to go completely dry still.

You might check with your doc about doing kegels during urination at this point. I've read that can lead to irritation post-surgery. You might try doing them at specific times during the day other than while urinating.
Posted 4/23/2008 5:37 AM (GMT -8)
Nancy,
Everybody heals at a different rate, and two months is way too early to be discouraged. Especially with the complications he experienced. As far as the rash goes, what kind of pad is he using? How many a day is he going through. I found the Male Guards very hot to wear, so I tried one of my wife's ultra thin pads, and it was much more comfortable. I was sure I would leak through it at first, but was amazed at how much they can actually hold! I found that out when an unused one went through the washing machine in my back pocket. Just an FYI, to me it felt as if I was leaking much more than I actually was. Sometimes the feeling of a gush is little more than a drip. Have him keep doing his kegels, and I'm sure you'll see some results in no time. When the improvement does come, take note of it no matter how small. And please keep us posted!
Best,
Mike
Posted 4/23/2008 9:12 AM (GMT -8)
Nancy, and all -- We are on the exact same time frame.  My husband is equally making no progress, but doesn't have the irritation issue.  Someone a while back recommended "Calmoseptine" ointment, which is according to the sample a friend gave me is a "moisture barrier ointment, protects, sooths and helps healing of skin irritation from urine,diaper rash", etc.  They have a web site.  I got this for a case of shingles/infection in a very bad spot, but saved it.  Now the reason I suggest this product is that the person who used this got it for rectal cancer and pronounced it a miracle aid for comfort after trying various others.  I know, not the same thing, but irritation is irritation.  I'd not heard of it, but then I saw it mentioned on this forum.

Thanks to all for the encouragement on the incontinence front.  My spouse too has been more sedentary.  He's ok once asleep until mid morning, a condition that hasn't really changed at all.  Then it pretty constant it seems. I suggested he try to urinate on an hourly basis, rather than wait.  Not sure that has helped. He's vague about the Kegels, so I really don't know.  I guess I was hoping for some gradual change.  Other than a coke in the afternoon, I think he's just having de-caf tea.  Any advice on effects of certain liquids?  I'm sensing discouragment, frustration, and anger over the lack of control-- all quite understandable.  I imagine everyone goes through this unless they are among the lucky ones.  Val's spouse

 

Posted 4/23/2008 9:36 AM (GMT -8)

I found that walking helped me quite a bit.  It was difficult at first, because when I walked I leaked more heavily than when I was around the house, but after a while, I leaked less and I believe the walking helped accomplish this.  I still try to walk at least a mile a day.

Still a little bit incontinent, but now just a few drops a day....unless my allergies are around, in which case I cough all day and leak more....

Posted 4/23/2008 2:43 PM (GMT -8)

I agree with DanmanBob and the other walking advocates.

I did serious walks -- about 1hr:15min to 1hr:30min each day for two years prior to surgery and am back to that time again post-surgery. These walks involve lots of steps and climbs both up and down, so even though I may be a bit slack on the Kegels, I'm guessing my pelvic floor still gets a good workout.  I attribute my lack of leaks in large part to this.

On the subject of Kegels, the urology nurse who showed me how to do them, said that done correctly, they are as good as Viagra.  Added incentive to keep doing them....  There, I've just taken another Viagra, and it hasn't cost me a thing :-) 

Posted 4/25/2008 8:12 AM (GMT -8)
Thak you all so much for the wonderful support.  Needless to say, this is a difficult journey. We still see no improvemnet but wil continue with those kegels and walking. My DH does walk on the treadmill everyday but still gushes away. We will continue to hope. I can not imagine how he feels with the continual burning of the urine all day and just wish at least that would go away. I guess we just have to deal with the reality of the situation and move on with hope. You have all been such an insiration to us, especially those who continue with their struggles and have such a positive attitude. Thank you again for the continued support and upbeat out look. Nancy

Posted 4/25/2008 7:41 PM (GMT -8)

    Hey Nancy,  Yes it is very tough!  Mostly the mental and emotional part of it.  I guess I am lucky in the fact that I do not have any rash or pain.  But I am still leaking at the rate of 6+ pads per 24 hour period.  And Yes, today has been one of those bad days.  But I know this feeling won't last long and I will be back to myself soon.  All I can suggest is to support him and when needed....give him space.

    Holler at us anytime you want,

    KW

Posted 5/16/2008 3:02 PM (GMT -8)

Hello HW Friends: Thought I would post an update on our journey. Thanks for thinking about me DanMan and TC. My hubby has been working out of town for the past few weeks and I was able to join him for awhile. It was good to get away, although not without challenges. Hubby and I went to our University hospital so he could have a cysto fo the bladder due to irritation and burning, plus the continual incontinence. His doctor was out of town so the exam was done by another uro doc-very nice man. Anyway, all looked fine, with some healing still going on apparently. This was at the 6 week point. The good news is that the burning has resolved and we are not sure if it is due to time or the cranberry juice and pills he is taking.  When we were at the hospital, they checked the ph of his urine and found it to be on the very high alakine side. High alakine results in high amounts of ammonia, hence the burning. I went to the grocery store that night and bought both cranberry pills and juice and since then no burning! Very excited and happy to have resolved at least one problem. Unfortunately, the incontinence is still as bad. No signs of improvement at the 12 week point thisTuesday. I was interested in the post by Chaso36 on 11/20/07 about stem cell injections for incontinence. I have not been able to find much information but it does look to be promising. It works better in women but still working on using it in men. The reason it does not work in men is due to scarring from the surgery. I wonder then if the treatment is done sooner if there are better results? Most of the research seems to be done in Austria. I would be interested in any other information any one may have on this procedure.  Our trip to the hospital was a nightmare but at least ended up safe. We have to take a major interstate highway to the hospital which has posted speeds of 75 miles per hour. Of course that means cars and trucks both go at least 80! I was driving and saw the car in front of me swerve, I soon spotted why, a very large piece of irregular metal in the road right in front of me. Cars were swerving all over the place. I was unable to avoid the item and bang, you guessed it hit it at an angle. Blew the right front tire, the headlights pulled out and the bumper was smashed. Called 911 for assistance becasue we had to pull over to the center median as I was in the center lane and could not get over due to the speed of the other vehicles. Patrolman never came and my hubby ended up changing that tire less than a half foot away from that speeding traffic. Never mind the fact that he leaked all over and had to change most everything. He did not have a change of pants along, wo we tried to "air out" his pants on the rest of the drive. Lucky it was a sunny day and very dry here. Poor guy,he is definitely my hero in so many ways. We made it to his appointment on time but a bit frazzled! Thank God he was not injured in any way when changing that tire. I didn't know whether to cry or throw up! Never saw a patrolman and weren't about to wait for one and miss the doctor appointment.

This week we drove all the way back to the hospital for what we thought was going to be a biofeedback session. Nope,just a consult for  biofeedback training. This is something we had to ask for and is not really encouraged at our facility. They have a huge uro department and no one who does biofeedback. So now we are waiting for the referral. At this point we are willing to try anything and just want to make sure my man is doing the kegels correctly. If he clamps down hard he can walk a short  distance without leaking, but must be consciously holding it the entire time. I try to stay positive for him but do get down. He was such an active man and now does do his treadmill walks but canot participate in his usual athletic pursuits and hobbies. Very discouraging. I am looking to the future for possible treatments, he is focused on making the kegeling work. I try to support him and pray that will work. His skin is so super sensitive that he can only wear the cup drip collectors, which do not hold much and are very costly. He has had a fungus infection with really bad skin breakdown and does not want to experience that again so is hesitant to go back to the pads. Wtih summer approaching I know it will only be worse with the heat. We keep hoping to see improvement.

Thanks to all of you who have supported and encouraged me during this time. It is so difficult for the spouse as well, but I try to remember it his my hubby who really carries the burden of this disease and if I fall apart I am not helping him. You all are helping me at this time and I can't thank you enough for that support. I do go to counseling, if for nothing else to vent. However, I am finding the friendship and support I receive on this forum to be the best therapy. Wishing you all good health and blessings, Nancy

Posted 5/16/2008 3:11 PM (GMT -8)
Nancy, your journey so far has been a series of ups and downs, huh? Hopefully the kegels or biofeedback or natures healing will come to his assistance shortly..
Posted 5/16/2008 6:48 PM (GMT -8)
I just had surgery and am fine sitting or lying but can't hold a drop standing. My daughter is an RN and had some problem in the past but cured herself through exercise with a video and a ball I think. she gave me the web address and I ordered the kit a little while ago. I am going to try everything before going through any more surgery I guess I can post the web site http://www.phoenixpub.com/
Posted 5/16/2008 8:06 PM (GMT -8)

    Nancy,  I know it can be tough.  I have gotten where I have a spare pair of pants and plenty of pads in the car at all times just incase.  I would just keep with the walking, kegeals and bio-feeddback at this point.  Give his body time to try to adjust.  There are options like the colligen injections or the AdVance sling that may help.  I just had another colligen injection and this time it seems to be working.  Two days and almost completely dry.  Will see what happens in a week or so!  As another "leaker" that can really understand what your man is going through all I can say is to try to stay positive.  Believe me....  I know he will have bad days.  With a little planning and work he can still be active. 

    Good Luck,  KW

Posted 5/18/2008 4:04 PM (GMT -8)
Nancy,  Sounds like our husbands are making the same lack of progress at 12 weeks.  God bless him for putting his shoulder to the wheel, literally and figuratively, irrespective of the downside.  I suspect you both know the statistical times of recovery, so patience, encouragement, and kegels what is needed.  Kegels I can't do for my guy.  Glad to hear of your success in getting the burning eliminated.  This problem seems like something straight up that the urologist would identify.  But bringing it up here may well help someone else avoid the misery.  Keep us all posted on his progress down the road.  I am encouraged by the accounts of others who have struggled with incontinence for months and then had the problem resolved.  But I should say that I think my husband is making some small progress in that he seems to be a bit drier, longer in the morning.  Afternoons and nights, well, not so much.  Hope your guy is keeping his spirits up.   
Posted 5/18/2008 9:24 PM (GMT -8)
Nancy
I found that Balmex worked real good for the diaper rash. Its not just for babies. I slathered it on day and night. I used the 16oz size tub. Many. Its not greasy and is easy to use. A little Neosporin on the end of the penis helps with the pain. Twelve weeks is not a long time for a lot of us to go through this. The nightmare will not last forever, even if it seems that way now. No one can guess how long it will last but usually one day, out of the blue, it slows drastically or stops. Just keep the skin protected as much as possible in the meantime. Balmex worked for me. Good luck to both of you in dealing with this.
Posted 5/19/2008 3:38 AM (GMT -8)
Nancy - I so well remember feeling so "hopeless" in the first weeks after Bob's surgery. I didn't find this wonderful forum until about 2 weeks post surgery and felt so much more connected and knowledgeable from that point on.

The leaking will become a "distant memory" once it's under control. It is amazing how quickly we forget something once it is "DONE" . . . . at a recent check up with his urologist . . upon being asked about leaking . . the look on Bob's face was one of . . . leaking?? did I leak?? . . . . and then it was like . . oh yeah . . .all is well there. . . .I'm sure that's the reaction that makes the doctor KNOW that all is truly fine in that department.

Your hubby needs to keep active to keep those muscles in good working order to do what they will eventually learn to do again. Hang in there; stay with us for strength, support and information . . .stay well.

;o) Linda & Bob
Posted 5/24/2008 9:31 AM (GMT -8)
Thanks to all of you again for the wonderful support. I think patience is not a strong point with myself or my husband. Perhaps a lesson to be learned here. I am happy to report that, exactly to the day of his twelve week point, he has seen some slight improvement. For that we are extremely grateful and hopeful. He went to his first biofeedback and was encouraged by that. Found out he was not doing the kegels exactly correct and is working on that now. Valentine08, I would encourage your husband to go if he would. It really gave my husband more hope and they were very encouraging. He is now mainly dry in the morning but still very wet when he is active such as working in the yard, bending,  afternoons,etc. Somewhat drier when he does his treadmill walks, so we are encouraged. It seems our husbands are at the exact same point and I wish you both well, and hope for continued improvement. It is a difficult road, but with the support, sharing and caring, I know we will get through these difficult times. The physical therapist did say to be careful of things that irritate the bladder. Unfortunately, cranberry juice was one of them. Citrus juice and fruits, caffine, tomato products, anything acidic. So, we continue to work on the recovery, switch to cranberry pills (pt said ok with that)and try to have patience. Thank you all for the encouragement and enjoy your Memorial Day. Please remember our servicemen and women on this weekend. The sacrifice is great for them and their families.  Anxiouswife

Posted 5/24/2008 10:24 AM (GMT -8)

anxiouswife Nancy,

Very encouraging news.  I am still suffering from very slight incontinence, but at the 12 week mark I was still using many pads a day, so it is good to hear that your husband seems to be showing signs of improvement.

Typically, men become dry at night, then mornings, then afternoons, then evenings.  I still have a very slight problem most days, although as I posted here recently I went an entire day earlier this week with no pads.....although it was not a real, real active day.

God bless you both in this journey...and you are right on when you say that patience is a must.  Easier said than done, I realize, but it is something we all need to remind ourselves of.

Have a great weekend.

DanMan

Posted 5/24/2008 1:46 PM (GMT -8)
Nancy,

I was having the same problem several weeks back and found out I was doing too many kegels and it was causing muscle fatigue. Maybe your husband needs to start over again. What I was instructed to do was cut back to doing 10 sets twice daily and do that for about 4-5 days then go up to 3 sets a day for day for another 4-5 days and then go to 3-4 sets per day. It worked for me and now I am 2 1/2 months post surgery and down to 1 pad per day and almost dry.

Make sure to stay off coffee, tea and soda for a while. Hope this helps

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