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Old 09-25-2008, 06:46 AM   #1
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fredofluo HB User
Red face bladder from hell

HELLO EVERYONE WHO CAN HELP !

I'm new on this forum so I give it a go as my counselor told me. I survided a terrible accident in 2005 that smashed my pelvis in bits. Great surgeons put me back together and been in so far 8 operations. I can walk nearly with no crouch now but remain with bowel and bladder incontinent, so far I m careful wi what I eat or drink. But I completely can't make up with happy living as I feel rubish all time as I got to catheterise that bladder and hope not getting new infections (doesn't empty completely anymore) So I don't know how to feel happy about living with this. The urology team is still watching this closely but never the less I lost patience.
I can't stand wearing the pads anymore and everyday that goes by, the whole procedure of emptying that bladder is a recall of the accident.
How can I put a brave face and go out again?
thank for you time getting back to me

 
Old 09-25-2008, 10:07 AM   #2
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cleansweap HB Usercleansweap HB Usercleansweap HB Usercleansweap HB User
Re: bladder from hell

Be encouraged. This can't be an easy thing to endure, but you're a good man, and you can't keep a good man down! I'll keep you in my prayers for full recovery. I just heard a story on the news where two teens, I think mountain climbing fell into a whole of some sort. They were missing for a week. Both their backs were broken. Some type of steel rods were put in to whole their spine together. Long story short, they are both recovering! They should have died, but know one leaves this world until it's their time to go..Never loose hope.

 
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Old 09-25-2008, 11:56 AM   #3
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Momof2sons HB User
Re: bladder from hell

fredofluo,

First let me say I'm sorry to hear all you have been through, it's not easy when things change or happen in our lives that are out of our control. But the fact you survived this traggic accident says alot about you and just how strong you actually are! You CAN do this!

I'm 44 now, but when I was 33 I had a hysterectomy and a bladder sling procedure. My bladder never regained function. The nerve was damaged during this procedure and can not be repaired. I have been "self cathing" for 10+ years now. At this point it has become second nature to me, but I sure can remember just how daunting the thought of self cathing was way back then. My urethra is at a 90% angle so that keeps me from having "free flow" of urine, but my bladder is very prolapsed (falling and stretched out) and I will need surgery again someday. One urologist I seen told me that I will need surgery again but to put it off as long as possible as I will be at great risk of having to wear a bag the rest of my life. That was about 7 years ago when I was told that. Since then there have been many new technics that have come out for dealing with bladder dysfunction.

I have not had any infections since Ive been self cathing 10+ years which is rare in it self from what I understand. I cath 5-6 times a day to keep things under control and that has worked well for me. My insurance pays for my catheters so its a new sterile catheter everytime I cath. I also don't use any lubricant when I cath. "I" believe that plays a huge part in why I DON'T have problems with infection, this is my own personal opinion of course. I found it not to be painful for me and just went with it and its worked out well for me.

Have you sat down with your urologists and talked to them about alturnative options with dealing with your bladder issues. Are they saying they feel this is a temporary thing and feel it will improve with time or do they feel this is a perminent thing going on? I know there are different procedures for re-routing the bladder. My urologists have told me about a procedure that consists of closing off the bladder outlet (urethra) and creating a stoma (hole) in the abdomon to the bladder that I could catherize throu that instead of the urethra.(I would think something like that would eliminate any leakage issues if they close off the urethra?) IF I get to the point where catherizing is a problem for me I would go for the stoma I believe if that continues to be an option for me. There also is something called the "supra pubic catheter" which is a tube through your abdomon directly into the bladder that can have a valve on the end of it that you can close and open to drain your bladder as well. But this is something that stays in abdomon which some people opt to go with if they have a "foley catheter" in the urethra and are dealing with infections. I had one of these on a temporary basis after one of my bladder surgeries for a couple weeks.
I guess my best advice would be to have you sit down and really have a talk with the urologists and discuss every option you may have with the extent of the injuries you sustained and go from there. At least you would then know all your options.

I admit it took me a long time to come to terms with no bladder function and having to self cath for the rest of my life being so young at the time, but it can be done. As I said at this point it is second nature to me and is just one part of my life, but it dosen't define who we are. I have in the last year have had some major medical issues having had brain surgery, part of my lung removed and have been diagnosed with a muscle disease that is progressive and no cure. This too is something I am "working on" to learn to deal with and as I had said before its not easy to deal with something new that affects our lives that is out of our control, but WE can do this too. I'm still learning the "coping skills" myself as well and find looking at ONE DAY at a time is best for me. These things that have creaped up on me don't define who I am. I don't look too far in the future and live one day, and look forward to tomorrow and to focus on what I still CAN DO and thats Do-able for me. YOU can get through this TOO!

I wish you the best and please let us know how you make out.
Your not alone for sure, and YOU CAN DO THIS!
Take care, and GOd bless.
Annette

 
Old 09-26-2008, 04:25 AM   #4
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fredofluo HB User
Re: bladder from hell

Thank you very much Annette about your time answering me
I get you too at the same age had to deal with the same situation, let me tell you that is so not funny to carry away those tubes. plus the incontinancy pad on the top. I feel very sad about the whole medical past you went through and trust me I ve been stock in hosp bed for 4mounth seeing people coming and going ... so had time to hear stuff of falling of 4floor storey bulding to crash landed motobyke throught the odd car ones! But I m from the category of the train ones and there is hardly anyone to tell so I should be greatfull about life but I m not!!!
I miss my body so much I would climb mountains to get sorted.
Nevertheless I compationnate wi ur pain can I ask you what sort of job you manage having the problem of cath 6times a day???
Take care and god bless you too...
Fred

 
Old 09-26-2008, 04:26 AM   #5
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fredofluo HB User
Re: bladder from hell

thank you very much cleansweap... for the preys and story.... poor kids.... life cud be so stupid sometimes. You know there are times when I think the train should have finished the job! I had a good life before even like everyone was anoyed by sill things not very relevant, but now having to cope with this crazy routine of mecanic work to do what before I took for granted really drives me nuts. The thing is I dont want to worry other about my down mood anymore cause that made me loose a few friends. People get sorry and short of words and when they boost my confidence and like over easter had to stay 4weeks after last operation (metal work underneath infection) they too get scared and get distant. Anyway always look on bright side of things but truly it s hard!
Take care
bye

 
Old 09-26-2008, 05:32 AM   #6
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Momof2sons HB User
Re: bladder from hell

Hi Fred,

I was able to work a very physical job right up until I had the brain surgery last year. I was a route sales person and delivered product to stores and merchandised the product. I was able to lift 50-60 pounds over my head to down stack product in the warehouse as well despite being of small stature at 5' 2". Other than having to self cath I had no other physical limitations, so I was able to work full time. Then last year the muscle weakness was increasing and I was having a more difficult time with the physical aspects of my job. Plus I was dealing with balance problems as well and thats when I went to a major medical facility who finally diagnosed the muscle disease as well as the balance problems which was the reason for the brain surgery. I was not able to return to work after that. So prior to all the weakness and balance problems I was able to work full time for many years dispite having to self cath. Are you able to cath standing up? I cath sitting on the toilet just like I would pee normally and just threw the catheters away when I was done.

That was extreemly hard to deal with as I was a very independant single parent raising my boys and owned my own home. I have been on disability through work since June of last year and have since filed for social security. I have had to sell my house and had to move in with my parents. This certiantly wasn't in the "plan" for my life at this young age, but I can't change what has happened at this point, so I have to learn to be happy as I said with the things I can still do. I look at this as a temporary thing (meaning living with my parents) and believe I WILL be out on my own again soon. I know it's not easy Fred but you can do this. Is there a support group you can get involved with so you can talk about what your going through? I know for me it helped me work through all this to be able to share what I'm going through with others who can understand and have been through similar situations. Perhaps your counsler can recomend one near by you? And again If I were you I would speak to the urologists and see if there are any procedures may be able to help your situation. It's not easy Fred, but your a surviver for a reason, maybe someday YOU will be there to help someone deal with something similar to what your dealing with. You may find there are others out there that can use YOUR help and understanding, you just never know.
I do wish you all the best, and hope you find some comfort knowing your not alone, there are many of us out here that are in similar situations and its Do-able as I like to put it.
Take care Fred,
God bless, and stay strong.
Annette

 
Old 10-20-2008, 08:34 AM   #7
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fredofluo HB User
bladder from hell

Hey Annette!

I hope you are coping ok. Sorry about that I replyed so late to your last message and truly I felt overwhelmed. See lately, I havent been in touch wi e-mails as I had diffrent issues to deal with and I tryied to meditate my way through it!!!
You are really a carismatic person. so much strenght, I can only admire and respect you still have enough compation to read others people problems and answer with such a pure heart. Your boys must be very proud of you and your family admiring this!!! I will meditate and ask god to make your way though all this!!! Good people atrtact good things.... life is a constant challenge. Peace and Love to you.
Now to be quite honest I keep on having invection through the catherising crap buisness and wait 4another course of antibiotic. I m tired of cranberry juice and citrucy fruits and the drinking drinking.... but cant manage it standing or sitting; only lying that s the annoying bit.
I am well cared I supposed by the team and I have to see how I do for a while and No Way I got the suprapubic tube back.... thats how I caugh up MRSA and at the time had a fistula liking in my hip that eaten the bone.... but I m still walking!!! maybe they want to fix me later about that but when ur infected in the bone you kinda F.... excuse my French (anyway I can cause I am! lol) I know its me having the issues about beeing ok with all that but you gave me the will to give it a go until something else might turned up. I cant do this for ever so I will do all they say and leave the rest to god. You know what? a great book gave me strength ... maybe you heard about it... Its called the Secret By RHONDA BYRNE. If you havent give it a go its heartlifting. you deserve a huge hug from me! thank you Annette



God bless you and your family
Fred from London





I was able to work a very physical job right up until I had the brain surgery last year. I was a route sales person and delivered product to stores and merchandised the product. I was able to lift 50-60 pounds over my head to down stack product in the warehouse as well despite being of small stature at 5' 2". Other than having to self cath I had no other physical limitations, so I was able to work full time. Then last year the muscle weakness was increasing and I was having a more difficult time with the physical aspects of my job. Plus I was dealing with balance problems as well and thats when I went to a major medical facility who finally diagnosed the muscle disease as well as the balance problems which was the reason for the brain surgery. I was not able to return to work after that. So prior to all the weakness and balance problems I was able to work full time for many years dispite having to self cath. Are you able to cath standing up? I cath sitting on the toilet just like I would pee normally and just threw the catheters away when I was done.

That was extreemly hard to deal with as I was a very independant single parent raising my boys and owned my own home. I have been on disability through work since June of last year and have since filed for social security. I have had to sell my house and had to move in with my parents. This certiantly wasn't in the "plan" for my life at this young age, but I can't change what has happened at this point, so I have to learn to be happy as I said with the things I can still do. I look at this as a temporary thing (meaning living with my parents) and believe I WILL be out on my own again soon. I know it's not easy Fred but you can do this. Is there a support group you can get involved with so you can talk about what your going through? I know for me it helped me work through all this to be able to share what I'm going through with others who can understand and have been through similar situations. Perhaps your counsler can recomend one near by you? And again If I were you I would speak to the urologists and see if there are any procedures may be able to help your situation. It's not easy Fred, but your a surviver for a reason, maybe someday YOU will be there to help someone deal with something similar to what your dealing with. You may find there are others out there that can use YOUR help and understanding, you just never know.
I do wish you all the best, and hope you find some comfort knowing your not alone, there are many of us out here that are in similar situations and its Do-able as I like to put it.
Take care Fred,
God bless, and stay strong.
Annette[/QUOTE]

 
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