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Getting Used To Having A Foley




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#1 Simon01

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Posted 11 August 2012 - 09:01 PM

I've posted previously about trying having a foley short term at various times in the past since I've been disabled, but now I've had one for the past several months that was initially also meant to be short term, but I wanted to see if I could really handle it because I was starting to have retention problems that couldn't be ignored.

So, over the past several months, I've actually done very well with the foley, feeling comfortable, not stressed about emptying, and actually feeling a little more independent since I can go out and not worry about restroom stalls being too small to change in (I was exclusively using adult diapers to mange incontience) since even in the limited space, I can still empty a bag.

I even found a company that makes these neat covers for the large bags normally used as night bags, that cover both the bag and the tubing, so it discreetly hangs on the side of my power chair, looking like a small tote bag that's part of the chair :-) I go a lot since I keep my fluid intake high, and even a leg bag wasn't holding enough and is a bit difficult for me to empty compared to simply lifting the large bag from the side of my chair and just parking next to a toilet to empty it :-)

So I'm doing overall just fine with it. However, I'm still having some adjustment issues and I was wondering if anyone had any advice on how to deal with those. I know I need it long term, and I'm ok with that. But I'm still getting used to the idea of it being permanent, and it still feels strange having to be connected to a bag all the time. And I find it ironic that I'm managing problems with control by being cathed and really having no control ;-) Logically it makes sense due to the retention problems, but it still feels strange going so much and seeing my bag full and not feeling like I needed to go, with the foley keeping me going constantly into the bag. I still feel some instinct to try to hold it, which I know is impossible with the foley in place, but perhaps it's because it's such a passive thing and I feel like I should be doing something, so I attempt to hold it despite knowing how being cathed is supposed to work ;-)

So is this something that will pass later on? I'm not depressed or having second thoughts, I just really want to feel more "ok" about it, but it just feels strange just letting myself go in the bag without actually having to do antything ;-) At this point, I hardly even feel the catheter, so it's really an odd feeling seeing my bag full without ever feeling like I had to go ;-) A friend of mine was telling me that's the point- not needing to control it and lettting the foley do the work is one less thing to worry about ;-) She makes it sound so easy :-) I admit to having a habit of over-thinking things ;-)

So is this a matter of giving it more time and getting more used to it? ;-)

#2 edlee

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Posted 11 August 2012 - 09:28 PM

Yes
ed

#3 NancyE

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Posted 11 August 2012 - 09:41 PM

Yes, I am going on my 7th year having one, I only have to pay attention transferring ant making sure the tube doesn't get kinked due to positioning.

Yes, I am going on my 7th year having one, I only have to pay attention transferring ant making sure the tube doesn't get kinked due to positioning.
Reality continues to ruin my life. - Calvin and Hobbes

#4 Tetracyclone

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Posted 11 August 2012 - 09:42 PM

Just apply a little Thought-Be-Gone to that area of your brain and in 2 years you won't even remember it.

#5 funkisfunkis

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Posted 12 August 2012 - 01:20 AM

Just apply a little Thought-Be-Gone to that area of your brain and in 2 years you won't even remember it.


pfft mine suprapubic cath slipped out of the bladder yday. Only had it for rougly 3 months.

Edited by funkisfunkis, 12 August 2012 - 01:22 AM.

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#6 Tetracyclone

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Posted 12 August 2012 - 02:22 AM


Just apply a little Thought-Be-Gone to that area of your brain and in 2 years you won't even remember it.


pfft mine suprapubic cath slipped out of the bladder yday. Only had it for rougly 3 months.

You will get yourself straightened out. It will be solved. Meanwhile intermittent cath.

Stuff happens.

You will be OK.
  • brockit79 likes this

#7 Simon01

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Posted 13 August 2012 - 06:09 AM

Thanks everyone for the advice! I've been trying to get myself to relax and sort of ignore that I'm cathed, and that's been helping a little. But I still keep getting a sensation of having to go- not uncomfortable, but like my bladder is starting to feel full, but the feeling goes away. Most of the time, I seem to not really feel like I'm cathed even though I have sensation. If I can get out of the habit of thinking I need to try to control it, that's going to make things easier :-)

thanks again :-)

#8 brockit79

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Posted 13 August 2012 - 08:10 AM

I wore a Foley for a weekend of camping at a music festival. I found it really uncomfortable. I am complete (no motor or sensory function) but I do get altered sensation. I used the flip flow valve instead of wearing a bag which I released every between 2 and 4 hours and longer over night, as I normally ISC.

JEEZ I wrote you a massive reply and the bloody thing disappeared arrrgh.

OK, have you tried intermittent self cathing (ISC)? If not I recommend you try it. It could be that the Foley is irritating you; or as you say a case of mind over matter. If Foley is the only option for you then ensure that you have silicone, as long as you're not allergic of course, ones which are less prone to causing infection.

Men that I know who ISC some also use a condom cath to buffer them when out; as these devices are a male thing as they are designed to go over the penile appendage, and thus do not exist for women, I cannot advise you on these things having never worn one.

I wish you all the best, relax you will get there; I tell myself this all the time and I believe it to be true.

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#9 Simon01

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Posted 13 August 2012 - 02:34 PM

I tried ISC briefly a long time ago, but it was too difficult with carpal tunnel flare-ups and the pain of actually cathing. Granted it was years ago- I've been disabled 19 years, and much of my attitude about what works and what doesn't was formed during that first few years. More recently, I was straight-cathed during a clinic visit and that was just as uncomfortable as my attempts at ISC all those years ago. For the most part, people seem to get it that ISC just isn't for some people, but I admit some of my resistance to ISC, and to an extent, having a foley, was my resentment of the never-ending badgering and social pressure from some people in the medical field, people in disability support roles I encountered, and some disabled persons who really seemed personally offended that I wasn't cathing or using a foley. Since for a long time most of my problem was incontinence, I just used adult diapers, and *that* seemed to really anger some people who figured out that I wasn't using a foley or doing ISC. Seriously, I had the bad luck of meeting disabled persons or people involved with working with disabled persons who sometimes seemed obsessed with how one managed bladder problems, and acted like it was cheating when someone in a wheelchair wasn't connected to bag or doing ISC. I get the medical reasons why diapers might be a problem, but most of the "you're doing it wrong" message I got was more of a social thing. When I was attending classes at a local college, I actually had an angry confrontation with a woman who I think was a quadriplegic about why I didn't have a foley- apparently she caught a glimpse of the extra diapers in my bookbag because I didn't close it fast enough, and also apparently had stared long enough to notice the lack of a leg bag and connection tube. I mean she was really angry, and the college's disability support staff talked with me later about it and gave me sort of a "well, can you blame her?" lecture. Not that it was an ongoing problem, but it was reallty upsetting having a few people act like I wasn't "really disabled" merely because I used diapers and avoided anything to do with catheters. It just seemed like any discussion about disabilities, either in person or online,
revolved around bladder and bowel management, to the point of some people getting *very* irate if the discussion drifted into other areas ;-) Seriously, I think I was chased off of one forum many years ago because I mentioned diapers and didn't have a cool story about how many hours per day I spent doing ISC ;-) And they seemed dismissive of external catheters leaking and not staying in place. It seemed like they felt it was better to have accidents and leak and just "deal with" the hassle of getting cleaned up and the embarrassment than to use a diaper. ;-) anyway-

That said, later I was had better luck finding urologists who seemd to "get it" about people not wanting their bladder issues to dominate their daily routines, plus better info online, although some info is still confusing at times. My current urologist understands why ISC doesn't work for me, although I actually might ask her clinic staff to try to show me, in case perhaps it might be better this time compared with a long time ago. She has told me that if ISC is as difficult as it for me, having a foley is the next best thing in light of my more recent retention problems- not severe, but there's residual urine in my bladder even after what seems like a good voiding, and she's really supportive of patients going with what really works balanced with what's medically appropriate for their situation.

It doesn't seem like what I'm feeling is irritation- I have sensation enough to feel pain and discomfort from a straight cath or a foley being inserted without numbing gell being used, but sensations are also mixed up at times, so I can feel empty when there's residual urine or feeeling full when I actually am empty. The times I feel like I need to go with the foley in place aren't uncomfortable, and don't last long, just feels a little strange. Most of the time, I'm very comfortable with the foley in place, and I seem to be doing well overall with it, I just wished I could *really* adjust and let it just be a part of my condition. Logically, I know it's not a bad thing, just my condition changing and me doing what I need to do to manage things differently. :-) But I still feel a little strange needing a foley now after years of avoiding it- perhaps having more understanding people involved has made it a little easier to accept, and having to accept that it's going to be long term. The positives so far totally outweigh the negatives- but I sometimes get these "episodes" where it still feels *really* odd being connected to the bag, and having no control over going seems counter-intuitive to managing problems with control ;-) I'm trying to get out of the habit of trying to "hold it" and just ignore being cathed and let it do what it's supposed to do, and enjoy those positives I was talking about ;-) So I've mostly accepted it, I'm just trying to accept needing it long term and getting over the *not* seeing it as odd to fill my bag without feeling like I had to go ;-)

I will say that this time with the foley has been easier compared with the other times I tried one because even with the need for it, I've still had some choice in whether I have it or not, an understanding doctor and clinic staff making monthly cath changes as easy as possible, and finding out that I can use the larger bag with the neat cover I bought instead of a leg bag- for me, that's easier to connect and empty than a leg bag.

I hope I haven't sounded too negative- I really am doing fine, I just wish I could go further with feeling fine and not feel so "odd" about needing a foley now after 19 years of thinking I didn't ;-)

thanks again :-)

Simon

#10 Tetracyclone

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Posted 13 August 2012 - 04:49 PM

Simon- I am glad you took the time for that post. It is an interesting read. Consider turning those experiences into a comedy routine. It is a hilarious commentary on how foolish and blaming groups of people can be. Humans!

One thought for you-
times I wear a foley for travel I have had that experience of feeling full. I tried standing or boosting myself from the chair thinking maybe a pocket of urine in the bladder was not getting out. I would sometimes roll myself up from bed to sit. It seemed to work for me.

I do think it is best to assume our sensations are really telling us something , but if you cannot make sense of it or a lont time... nothing to do but ignore it.

#11 Simon01

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Posted 15 February 2013 - 09:02 PM

(sorry about the delay in responding :-) )

 

Indeed I've thought about writing something about the whole "disabled persons hating other disabled persons" problem I've encountered ;-)   It seems like though it's not as bad as it used to be, at least what I've encountered in the recent past.    Online forums with more real stories from real people, and less of the "but you *have* to do (fill in the blank time consuming/painful/plain embarrassing thing) because everyone else does!"  discussions ;-)    

 

I've been doing very well with the foley, and indeed I've suspected that some of that "full" feeling might be residual urine not getting out because my tubing was kinked, and that might have been the cause sometimes because I do get a full sensation, shift a little in my wheelchair or move a little in bed and the feeling goes away, and my bag is filling like it's supposed to.  However, I still keep getting a weird "pressure" feeling when everything is working like it's supposed to- feeling like I'm going to burst but my bag is filling properly, but the feeling goes away, and in general feeling the catheter more than I'm used to.   One of the nurses at the clinic I go to told me it's not that unusual, sometimes you can be cathed for a while and suddenly it feels like it's "new" when a new foley is placed- I was feeling like that over the past week after my newest cath was placed last week.  Sometimes one's bladder decides to act up a little and treat a new cath like it's the first time you've been cathed ;-)    But overall, I'm comfortable, feeling more independent, and slowly adjusting to the idea that this is permanment, although that still makes me stop and wonder just what have I gotten myself into- connected to a bag permanently?   But that's outweighed by the positives :-)

 

Still feels counter-intuitive to be totally incontinent to manage incontinence, and it's taken me a while to understand that going in my bag isn't the same as having an accident despite the lack of control over it, but having one less thing to worry about makes it worth it so far. 

 

One thing though- if later on it feels like I don't need it (retention issues cleared up) but I'm too used to it, would it be better to remain cathed just to feel more secure?

 

Simon




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