Loc: San Antonio
I haven't posted here in a long time but I'm back.
I've found myself in a bit of a dilemma- or maybe not ;-)
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 ;-) Seriouly, I've met a few people who if I didn't know any better, acted almost like those who don't use catheters to manage bladder problems are betraying those who do.
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 never had a problem understanding the actual medical need for one, and I totally understood that it is something that works fine for a lot of people, I merely resented the apparently social agenda driving some people to insist that I "had" to. I've had a couple of urologists during an initial clinic visit not even perform any tests, but simply start harping about intermitent cathing or having a foley about 5 minutes into the conversation, and one of them actually refusing to discuss anything further unless I agreed to either starting self cathing or foley placement.
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. Two weeks ago 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.
Last week 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 be 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, and I really appreciate their professional attitude about it- not jugdemental, and the doctor won't hit me with "I told you so" when I see her later on.
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, plus the botox treatment from November really will be wearing off over the next few weeks so that retention probably would be returning. I'm glad at least I had the opportunity to try the botox- again appreciating at least having real options on the table, so to speak, to see what might really be a good direction to go.
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. I'm even considering asking if a note can be in my file stating that I need to be cathed but might have bipolar episodes where I might be distressed or might insist I don't need to be (stress over a minor "glitch" with it for example) so the clinic staff knows to remind me that I need it, in case there's a problem when I go in for a catheter change.
So am I doing the right thing? just want to be sure ;-)
Edited by phoenyxx01 (03/07/11 11:34 AM)