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Dilemma, or perhaps not. [Mar. 5th, 2011|12:37 am]
No Pity: A Community for People with Disabilities
Hello! I haven't posted here in a while, but there have been some major changes with my situation.

I've found myself in a bit of a dilemma- or maybe not ;-) And apologies if it's too much information.

As of this month, I've been disabled for 18 years, wheelchair user due to degeneration in my lower spine caused by scoliosis and the effects of previous surgeries. I've had bladder issues most of that time but I've always managed simply with adult diapers for the incontinence and just taking extra time in the bathroom to make sure I was voiding completely.

I was always against self-cathing or having a foley, because I've run into way too many people who seem obsessed with making everyone in a wheelchair have their lives revolve totally around cathing or worrying about a foley. It seemed to be much more of a social agenda than a medical one. I've had people act really disgusted when they see my wheelchair and find out I'm not cathed. So I always thought I was smarter than the people telling me I needed to be cathed, when I knew I didn't need it. Self cathing was never really an option because I have enough sensation that it would always hurt, plus I have carpal tunnel syndrome that would really make it difficult. I never saw the logic of having to deal with all of that just so a few people would accept me as "really disabled", compared to already being in a wheelchair ;-)

Now I did try a foley short term a long time ago, three different "trial runs" and the experience was so painful, uncomfortable, and just plain embarrassing that I promised I'd never have one. The reasons I tried it were more about trying to shut up doctors or rehab people who kept badgering about it than any real medical need I had.

I also have problems with ADHD, depression, and bipolar disorder, which never really got treated properly because of limited resources and access to real help. But I have started seeing a great therapist so I'm finally close to real treatment.

More recently, I was having more retention problems, and over the past year had 3 different botox treatments for that, which worked but didn't last as long as they were expected, and I was noticing the retention more because I now could really tell the difference before and after.

So I was stressing about the retention coming back between treatments, and would have bladder scans that always showed varying results- sometimes no retention, sometimes some, and I'd opt for a foley just for short term relief, then have a bipolar episode where I'd sudden want it removed, then later still not be sure if I needed it or not.

The last botox treatment was in November, and yet again, it's wearing off, and I started stressing about retention- actually feeling like it. Last week I went to the urology clinic for a scan, feeling very full despite having voided some in my diaper en route to the clinic. The original plan was that I have a foley only if the numbers were too high. But the numbers were low- even though I really did feel like I was about to burst. I started having a panic attack, kept trying to void more but couldn't, and the nurse offered to put in a foley if I really felt that I needed it (the doctor had already ok'd it). I agreed, and really did feel a lot better after being cathed. I was still figuring on this foley being short term as well.

Yesterday I went in for what was initially planned to be a test to see if I really needed it, figuring that it was going to be removed unless I really needed to have it left in. But my doctor had decided that it would be better to leave it in, because it wasn't good to keep repeating having a foley off and on, because of my bipolar making it so difficult to be certain about what I wanted to do. But it was ultimately up to me whether or not to either have it removed or to stay cathed- but they were really concerned that I'd have it removed then have another panic attack, all over again feeling like I was in distress and having the foley put back in. The nurse and I talked about what happened last week, and she did tell me that I wasn't in retention, but that being cathed did make me feel better after the panic attack. So I asked, in light of my situation, and despite not actually being in retention, did it look like I needed to remain cathed, and she said yes- emotional need for it is just as real as if I really had been in retention.

So I thought about it and opted to try the foley long term, thinking of not wanting to have another panic attack, and not having to worry about retention- real or feeling like it and stressing about it. I admitted that over the past week, I really have felt better, and actually comfortable as I'm getting used to it. This clinic really does a good job and the past short term foley placements went better than what I had to endure in the past, and no social pressure, just honest encouragement to give it a try. That was what happened yesterday- once I said (still a little reluctantly) that I'd try it out longer, the nurse took the time to explain things and made sure I knew how to switch between the leg bag and the night bag, and explained that the discomfort I'm still feeling would gradually go away. Basically reassuring me that perhaps I did need it, and that I'd do just fine long term. The placement last week went well despite the panic attack.

So I'm opting to try it long term, and I've been referred back to the urologist I initially saw when I first started going to the clinic, so she can monitor me with the foley. Last time I saw her before she referred me to the doctor doing the botox treatments she did tell me that the botox might not work for me like I hoped, and that I *might* need to have a foley at some point.

Looks like that time is now. But is it hypocritical for me to have insisted that I was never going to need one, only to now change my mind so much about it? And is it common to opt for one more for emotional reasons than purely a physical need? I do feel better physically, including not having to change the diapers nearly as often, since all I have to do Is empty the leg bag instead of the moving around and transferring changing requires. But I also feel so much less stress from not having to worry about the next time I feel like I'm going to burst and wondering if it's real or not. I'll just need to go to the clinic each month to have a new foley put in, but that seems relatively easy.

Suddenly it doesn't seem so bad- even though I always said I wasn't going to need one . My therapist told me that it's really possible that as I get the bipolar and other problems under control, I might feel even better about being cathed so I won't have those episodes where I think I don't need it when I still actually might. Would it be too much to have my doctor put a note in my file that I do need to be cathed so the nurse knows to place a new one during those times I'm at the clinic and having a bipolar episode and start insisting that I don't need it?

It does feel like I'm doing something good for myself, and I'm realizing that being cathed isn't failure, just something I have to have.

So am I doing the right thing? just want to be sure ;-) I've been researching and I can't find anything about feelings of rentention caused by stress, nor can I find anything about being cathed to deal with stress-related retention (or one feeling like it regardless of what's actually going on).

From: lilsinger_95
2011-03-05 04:16 am (UTC)
I'll be honest, I'm visually impaired, so this post actually taught me a lot as I don't know much about the topic of bladder problems in general. However, I am an msw student working in the mental health field. I don't feel like you're being hypocritical. Things do change: some problems get worse or better, you learn to manage symptoms better, and sometimes better technology replaces the need for something previously less desirable/cumbersome I'd imagine in the physical realm. Even people who don't have bipolar or any other kind of mental illness can go back and forth on an issue. I know what you're talking about is different and obviously distressing to you, so I of course don't mean to minimize. But I feel like it's probably normal. As for putting a note in your file, if this is something you're sure about, it might be worth having. It would be something akin to mental health or medical advance directives, only something inbetween the two maybe? I don't know the legality of that, nor do I know what country you live in. Anyways, the only ting I would caution is that you think about how you would feel if you felt "ok" but were having problems caused by the bipolar and then being forced in to a medical procedure (or talked out of one) that you've already described as painful. If you have some stress reaction surrounding the situation already, it may not be wise or in your mental health's best interest to do something like that.

Would putting a note to the effect of saying that you have to wait a period of time before they'll take it out be something they would consider? As in, the length of a typical bipolar episode for you... or maybe until you've met with your therapist to discuss it? Something so that you would still ultimately have control but that would insure you have proper support through the decision-making process?

Again, this is only my 2 cents. I know almost nothing about the medical or legal issues involved, but from a mental health standpoint (of a student), those are my thoughts. I'm glad that therapy is helping, and I'm also glad you seem to have found a clinic where they are interested in what is best for you in all ways, not just socially etc.

Take care,
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From: simon1
2011-03-07 03:02 am (UTC)
Not minimizing at all- really appreciating the response :-)

You hit it right on the head about still having control but needing help in the decision making process. That's what's happened to me during some episodes, like I can't process what's going on and freeze up. My idea was basically already deciding that yes, I need to be cathed and I'm ok with it, sort of my default mode on it, so that way if I do look distressed or start seeming iffy, or insisting that I can go without it, that they know to take a few minutes and remind me that I need it.

I like the idea about having a note saying I need to wait a period of time before having it removed. I seem to have two types of episodes- some that last a few hours, and some that last for a few days.

What's always been frustrating about it is that I function fine overall, but the bipolar disorder and other problems are just enough to really make functioning difficult but not so bad to justify not going out and doing things, and in the past most of the bad episodes have occured when I've been alone, or in a situation where I could work my way through it without anyone really noticing or someone just thinking I was in a bad mood that day. Nowadays though I'm out doing much more than I used to and *that's* when things get bad- combined with social anxiety, and it gets so difficult to "process" what's going on sometimes. That's why I was thinking having the clinic staff know about my situation and the difficulty I might have sometimes. What's embarassing is that I can't easily deal with stress because the only thing that works for me is, let's just say a bit childish and not something I can do in front of people. The other embarrassing part of it is that when I'm having difficulty processing things, the only thing that gets through is having to be talked to like I'm a child- that's what the nurse had to do when she explained that she was going to cath me. I mean, of course I know what things mean, but for that few minutes, it's like logic shut down.

But I really will see what the clinic staff and my doctor thinks about my idea. Like I said, it's my decision, but it would really help knowing that they can step in and go with what I need rather than let me make a wrong choice at that moment because I was in short-term distress. I'll also see what my therapist says about it.

thanks! :-)
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[User Picture]From: anjak_j
2011-03-05 06:41 am (UTC)
But is it hypocritical for me to have insisted that I was never going to need one, only to now change my mind so much about it?

No, it isn't. Not at all. None of us can foresee how our needs will change, disabled or not. You made an initial decision based on how you felt about things at the time - things are different now and you've decided that your original decision was incorrect and perhaps a little short-sighted. But all humans are all kinda myopic when it comes to what lies ahead, and expressing their opinions about it.
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[User Picture]From: kittenmommy
2011-03-05 06:30 pm (UTC)

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From: simon1
2011-03-07 03:50 am (UTC)
what's this?
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[User Picture]From: kittenmommy
2011-03-07 07:24 am (UTC)

Agreement with your comment! :D
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From: (Anonymous)
2011-03-07 08:43 am (UTC)
thanks! :-) Still trying to process needing a cath to prevent panic attacks ;-)
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[User Picture]From: kittenmommy
2011-03-07 10:07 pm (UTC)

Yeah, that would be a big one.
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From: simon1
2011-03-08 12:30 pm (UTC)
Just never expected to need one because I was stressing too much. The November treatment will have worn off in the next month or so, meaning the retention would have been coming back. So I guess I'm cathed already so I won't have to worry about that ;-)

Although I've been able in the past to force myself to void completely prior to a clinic appointment so the scan shows an empty bladder and I get out of being cathed. Can't do that anymore ;-)
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[User Picture]From: kittenmommy
2011-03-08 01:58 pm (UTC)

Well, then I guess it's time to bite the bullet and keep the cath. It will definitely make your life easier, because it's one less thing to cause you stress!
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From: simon1
2011-03-09 04:15 am (UTC)
Indeed it does look like I'm committed to the cath- despite a couple of bipolar episodes where I was feeling tempted to call the clinic for an appointment to have it removed. I'm feeling alot better about it and I hope I do get used to it. While there's still some discomfort, I've also gone for hours hardly noticing I even have it.

I'm thinking the best way to get used to it is to stay cathed for a while ;-)

Also looks like I can increase my fluid intake. Still feels odd filling whichever bag I'm connected to and not even feeling it.
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[User Picture]From: kittenmommy
2011-03-09 07:45 am (UTC)

Also looks like I can increase my fluid intake.

Drink it up, bb! ;)

Still feels odd filling whichever bag I'm connected to and not even feeling it.

I bet! That would be... really odd. But at least you can drink lots of fluids now and not worry!
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From: simon1
2011-03-09 09:47 am (UTC)
thanks for the encouragement :-)

Ironic I'm more incontinent while cathed compared with having some control just in a diaper. And it feels a little strange needing a diaper even with the foley in place, but I do need the backup, as well as in case some "other" problem arises.

I still wish I wasn't having bipolar episodes that make me want to suddenly want to have it removed- *that's* more challenging that adjusting to having the foley. I think that note in my file is going to be necessary.

Also feeling a little strange knowing that this time I'm more or less going to be permanently cathed.
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[User Picture]From: kittenmommy
2011-03-09 04:04 pm (UTC)

Well, you've gotta do what you've gotta do, KWIM? It's probably for the best, in the long run.
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From: simon1
2011-03-10 07:52 pm (UTC)
My therapist was telling me that today- she said I looked more relaxed and it sounded like I was doing the right thing, instead of endless cycles of the botox treatments, having them wear off too soon, stressing about retention, and the panic attacks and indecision on the whole cath/no cath decision. She reminded me also that as the bipolar is treated, I really will feel a lot better about it- not letting stress over short-term problems that might arise making me want to have it removed, and I might not need to have any special instructions for the clinic staff if I'm used to it enough.

More positive encouragement :-) Going to miss having bladder control ;-)
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[User Picture]From: kittenmommy
2011-03-10 08:02 pm (UTC)

Well, at least you don't have to stress out about how much liquid you're drinking. There are pros and cons, and you have to decide which one outweighs the other!
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From: simon1
2011-03-10 08:20 pm (UTC)
Very true! I do feel a lot better not having to monitor fluid intake so much, and I think I can solve the full bag problem by getting a bigger bag.

It sounds like the pros outweigh the cons. It's just a lot to get used to, and the idea of being like this permanently is going to be an interesting experience- I hated having foleys in the past, so it's confusing feeling better about it now. But I am trying to make it work :-)
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[User Picture]From: kittenmommy
2011-03-10 08:24 pm (UTC)

And it's not written in stone. If you later decide - for sensible reasons, not because you're in the throes of bipolar! - that you want to take it out, you can. So there's that too!
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From: simon1
2011-03-07 03:49 am (UTC)
Said it better than I could have ;-) I do think I would have felt differently about it a long time ago if I had access to better info and support about it. I was never against it merely to be defiant or thinking I was better than anyone, but because for me, anything is automatically suspect if the only reason for it is "everyone else has to" or "them's the rules". I've never understood the obsession some people in the disability and healthcare community seem to have with either intermitent cathing or having a foley, and then I've wondered if that's the norm or if it was just my bad luck of running into narrow-minded people when I needed more objective points of view. I honestly think I might have done things differently if I had been able to have a frank look at all options a long time ago. Even in the disability literature or info I've found online over the years, there sometimes seems to be an inordinate amount of attention spent on trying to convince people that catheters are the only acceptable way to manage bladder problems. I swear I thumbed through one disability magazine and couldn't help but notice the large number of ads for companies selling catheter supplies. I'd be just as irked if I read a photography magazine or website and only saw ads for Nikon cameras and gear. Nothing wrong with Nikon of course, but I have a Canon and get great photos with it ;-)

I think one huge difference nowadays is having found a urology clinic with good doctors and staff working there. I've really appreciated how they presented having a foley this time as something worth trying, and not being judgemental about my past reasons agaisnt it- and I get "I told you so" from any of them when I let them know that I'm actually doing ok with it ;-)

I'm wondering too if things overall in the world of disabilities and related healthcare has changed- I admit a lot of my negative attitudes were the result of very negative experiences a long time ago, so when I come along now and give something a second look, things really are so much different.
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[User Picture]From: 3kitties
2011-03-05 08:15 am (UTC)


It seems to me that you were putting a fair amount of pressure on yourself not to need a cath in the first place, to stay "less disabled." You are probably the only one who really cares that much about whether you "really need it."

It would probably be a wise thing to have them put some kind of notation in your file in case you try to make changes during a bipolar episode.

Btw, anxiety can make you hypersensitive to sensations in your body.
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From: simon1
2011-03-07 04:12 am (UTC)

Re: thoughts

Indeed I was putting a lot of pressure on myself ;-) But it seems that I was getting a lot of "social pressure" about it in the past.

I admit it- a little under two weeks with it, and perhaps I do need it ;-) I've been so much more comfortable, and even sleeping better. It just feels so *odd* having zero bladder control with it, and having to be connected to a bag all the time.

What I don't get is why it's more comfortable now compared to the times in the past that I tried it out and hated it.

I'll be talking with my therapist and later on the people at the clinic about having that notation in my file- I really do want this to work for me and I *don't* want change anything because I might be temporarily distressed over a minor problem that might arise with it. Odd I know asking that the decision that I need it might have to be made for me sometimes but I'd rather not find myself going through another round of off and on foley placement.
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[User Picture]From: teal_cuttlefish
2011-03-07 08:45 pm (UTC)

Re: thoughts

But you are more comfortable with it, and that is a huge factor right there. No one but you is going to hold your previous distaste for the catheter against you. It sounds like then it wasn't the best solution for you, but now it is. Things change, no matter how much we resist that change.
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From: simon1
2011-03-08 12:42 pm (UTC)

Re: thoughts

I'm learning that now ;-) Still not completely sure about it and I've had a couple of bipolar episodes where I started trying to find excuses to have it removed and really had to work through them.

I hope it doesn't take too long to get used to it. It's really a strange feeling waking up in the morning not feeling full but seeing the large night bag full, and not even felt like I was going, and sometimes not even feeling like I've even cathed until I notice I need to empty whichever bag I'm connected to. Strange feeling having no bladder control when I'm cathed, and at times I do get an odd feeling like I have to go really bad, a lot of discomfort, then suddenly it goes away. And I'm a bit paranoid about the catheter somehow slipping out. Plus I still need to be in diapers as backup (catheter leakage being one reason) But I don't think those are pressing enough reasons to have it removed ;-)

Any ideas on how I can better get used to it?
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