Going back to the urologist

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I haven’t been to my urologist in over a year. The last time was when they were trying to get me to self cath. I ended up with infection after infection and gave up and just stopped going. I need a check up and just generally check in but I’m afraid they are going to push catheters on me again. I have a paralyzed neurogenic bladder. I’m used to diapers now and have settled into the fact that this and my amputated leg are my new normal.

 

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They will have to listen. It is up to you ! It is not them living with your bladder and leg. Good luck.

 

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I had the problem of infection from self cathing and switched to the Cure Hydrophilic Cath and can't remember having one since switching.

 

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I am so sorry you are going through this. During the day I am fine at night I flood the place diapers or not still no answers. This is so frustrating but I am grateful to have found the forum I have been so depressed and hate going to sleep at night because I have slept good in over a year and a half due to this issue at night. I hope you have a good check up and if you don’t agree with them tell them. I said no to Botox I’m done being prodded on.

 

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I meant haven’t slept good, sorry

 

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I know the feeling man. They are constantly on me to self catch or allow them to put either a indwelling cath or do a supra-pubic cath.

I will not do self or indwelling as it always results in a UTI every single time. And I would rather wear diapers than have a hole put in the side of my abdomen that I would have to put a cath thru every so often.

They have relented and they do botox injections every 9 months or so to force the sphincter muscle to stay open and allow drainage.

I have a neurogenic bladder due to nerve damage. Besides the fact that I have no feeling of needing to use the bathroom, the urodynamics test also showed that I have detruser sphincter dyssynergia so even when the detruser muscle is trying to squeeze and push urine out, the sphincter will not relax and allow output. Also the detruse doesnt fully contract it more or less just spasms instead of fully contracting.

So without the injections (or some form of cathing) my bladder will overfill and back up into the kidneys which is what they worry about. We found a happy medium with the botox so we are using that for as long as we can.

 

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@Draconic - yea my bladder fills up to capacity then just lets loose. They are also worried about kidney damage with me too. When they did my urodynamics test they filled my bladder with 600ccs of saline and I had no urge to go. They kept filling when finally the doctor said “ok you can stop now”. I watched my bladder on the screen and it just sat there and did nothing. I don’t know if I would do an indwelling catheter. I don’t have kidney problems yet but I would rather wear diapers then have a bag

 

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@justej same about the urodynamics. They filled up and the detruser would just spasm no real contraction. I dont care for indwelling mostly because we tried it and within two days I had this milky fluid coming out around it. Turns out it got really badly infected. Within two days. Not revisiting that option. Had blood clots coming out for days and most of them felt like what people have described as kidney stones. Not pleasent.

 

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@Draconic yikes! That’s good to know. So sorry you had to deal with that. I’m a high risk of infection (I can get sick or have skin infection at the drop of a hat). I’ve been dealing with this since I fell down an escalator 5 years ago this coming January 3rd and I’ve got no kidney issues yet. I’ve accepted diapers and have no plans to stick things in me anytime soon.

 

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They might be able to do a chemical Sphincterotomy aka Botox the external sphincter to let you release easier.

 

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Just do whatever you are comfortable with. I prefer diapers and plastic pants. No worries over UTI'S.

 

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I made an appointment with the urologist for Wednesday. Wish me luck!

 

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Hopefully all goes well. Be totally up front with your doctor. Don't hide anything,this way they can narrow down the issues at hand. Good luck, and keep us posted on the results.

 

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Good luck EJ!
Jim

 

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My urology team has me come in monthly to the clinic, when my spasms are bothering me or my straight catheter will not go up in me, they place a Foley in me and let my bladder have a rest. usually in a week to two weeks it is taken out and back too straight cathing. The best thing is they work with me, to make my life better.