Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 I've explained my mitrofanoff (which I still can't spell!) before, but I can answer questions again if anybody wants. The gist of it is that I can cath through my belly button, though I still have the option of going the " regular " way. It has some downsides, but overall I'm glad I did it. And for the other girly problem, depo provera is a godsend! Pills don't work for me, and the shots only work if I do it every 8 weeks. (the absolute soonest the doctor will allow) They're a pain, but they work and are worth it! ~e In a message dated 8/17/2003 2:38:03 PM Pacific Standard Time, hollyrp@... writes: > I think we've talked about this before, but I wanted to know what you all > think on an updated basis. Would any of you consider using a catheter to > urinate so you could drink more fluids during the day more often since going > to the bathroom is such a huge ordeal for most of us? Have any of you > already chosen that route? Are there ANY alternatives to spending from > 30-45 minutes using a Hoyer to go from chair to bed to get undressed, then > to commode, then back to bed to get dressed to chair, and then positioned??? > I'm nearing desperate status! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 It takes me half the time since I got a power tilt/recline/footrest chair. Do all dressing/undressing in the chair. You do not wind up as comfortable, but it is quicker, and you are freed of the need for the bed. jeff Holly Payne wrote: > I think we've talked about this before, but I wanted to know what you all > think on an updated basis. Would any of you consider using a catheter to > urinate so you could drink more fluids during the day more often since going > to the bathroom is such a huge ordeal for most of us? Have any of you > already chosen that route? Are there ANY alternatives to spending from > 30-45 minutes using a Hoyer to go from chair to bed to get undressed, then > to commode, then back to bed to get dressed to chair, and then positioned??? > I'm nearing desperate status! > > Blessings, > Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 Toileting has become one of my biggest obstacles recently. I have been feeling less confident in my own strength and beginning to fall or lose balance more often. I am toileting myself and transfering myself - only when I'm in my own apartment using my electric wheelchair. The difficulty comes in when I'm in another bathroom, even if the toilet is higher with grip bars around it. Typically I'm using the portable wheelchair which I cannot transfer in and out of on my own because it is not as steardy and is not the same floor-seat height that I have become used to for transfer. While I'm out, I rely on others to help me use the bathrooms which is a huge inconvenience for me to interrupt them and embarassing at times (depending on the person, typically I'm comfortable with my mother all the time and a couple of my close friends, but other friends it's uncomfortable with or other people that I haven't used the bathroom with before and I have to tell them how to help me while we're doing it. It's also uncomfortable if it's one of those times of the month, which I suppose you'll never get around - catheter or not!) I've been talking to my mom about alternative toileting methods. The problem is that I have the independence when I'm alone and in my apartment with my wheelchair and I don't want to compromise that ability for convenience while I'm out of the apartment on those few occassions. For now we're just dealing with the inconvenience and slight embarassment of public restrooms and fumbling with arms and legs and jeans and footrests in the way. I'm not really sure what else is available. I think that's a huge problem for most of the community. What IS out there for us to choose from? I need to know. This semester I'll be pulling 10 hour days at univ. There's no way I'll not be drinking and peeing 4 days/week for most of the day! > I think we've talked about this before, but I wanted to know what you all > think on an updated basis. Would any of you consider using a catheter to > urinate so you could drink more fluids during the day more often since going > to the bathroom is such a huge ordeal for most of us? Have any of you > already chosen that route? Are there ANY alternatives to spending from > 30-45 minutes using a Hoyer to go from chair to bed to get undressed, then > to commode, then back to bed to get dressed to chair, and then positioned??? > I'm nearing desperate status! > > Blessings, > Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 Holly, I just got a supra pubic catheter put in and my life has changed. I eat more, I have easier bowel movements, my circulation is a little better, my skin's not so dry, I have slightly increased strength and stamina, and for the first time in 25 years I am not distracted most of the day by an urge to pee. It's incredible to not be dehydrated. The difficulties have been the slow healing process. The cath seems to be touching a nerve and it hurts every other day. I also have bladder spasms on those days. They feel like strong involuntary pushes to pee, but subside quickly. It's only been a month and both discomforts seem to continue to get better. It's also hard to learn how to drink all day. The original tubing will be changed after 3 months when the site's healed. Then I'll change it every 3-4 weeks. I use a night drainage bag on the side of my chair hidden inside a fashionable black bag. No one can tell, and the 2000 cc capacity allows me to go all day w/o draining it. More independence! I don't use a leg bag cuz it's too small and would get heavy and drag on my skinny leg. I switch to another bag at night. I'm getting used to the new equipment and change in routine. No regrets. I could become a supra pubic poster child! Ha! I chose the supra pubic cath over a regular indwelling one cuz, frankly, I don't want people sticking things up in my privates on a regular basis. It hurts. And it's too near the anus and exposure to bacteria. It also interferes with sex more than I'm willing to deal with. I like my sex life the way it is. The supra pubic cath does require a general anesthesia if a spinal wont work. My bones were too decalcified for a spinal, along with other complications. But despite my low vital capacity and partial ventilator dependence, the general anesthesia went very well. They used gas on me. I used adult diapers for a while, but they don't hold enough and they're uncomfortable...gave me a rash. Some women I know wear skirts w/o underwear and have their attendants scoot them to the edge of the wheelchair to pee in a female urinal. It's faster than a full transfer. Too precarious for me, though. Feel free to e-mail me if you wanna chat more. Also, my AIM handle is althegrrl if you'd like to IM. Alana >to the bathroom is such a huge ordeal for most of us? Have any of you >already chosen that route? Are there ANY alternatives to spending from >30-45 minutes using a Hoyer to go from chair to bed to get undressed, then >to commode, then back to bed to get dressed to chair, and then positioned??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 With a mitrofanoff, you just put the cath in when you need to. The doctors will say that you should use it at least once a day, but even when I go a little while without using it, I don't have any problem. And if I decided for whatever reason I didn't want it anymore, I'd just let it go until it eventually sealed up. They were able to put the hole in my belly button, so you can't even see it. Sometimes they'll put it to one side or the other. For a few weeks after surgery, I had two caths in 24/7 (one through the mitrofanoff, one in the urethra) while everything healed, and HATED it. The bladder spasms were nearly constant, and kept getting worse. And all the tubing down my leg made most of my clothing pretty impossible. The supra pubics work for some people, but I don't think it would ever be for me... ~e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 I have had problems with leaking, though I don't think that's very common. (I tend to be a bit of an anomaly It hasn't been a consistent problem. I'll go weeks, even months, with little to no leakage. Then I'll have a week that's just awful. I often keep a maxi pad tucked into the front of my pants, which sounds pretty weird, but it helps on the bad days. I started taking a medication recently that the doctor thinks might help, but it's too soon to tell. If that doesn't work, she has one more idea of a minor procedure she can do that might help. Anyways, like I said, I don't think these are normal problems - I'm just special. I do still pee through the urethra regularly. When my attendents are helping me in and out of bed and to change clothes morning and night, they help me transfer. And when I'm home and my mom's around, she helps me. I really do prefer " the old fashioned way. " It's faster and easier for me. The caths make me a little sick to my stomach (another thing unique to me I think... and not a huge deal, it goes away in a couple minutes), and they don't just slip right in, I have to push mine in kind of slowly. And of course you have to be really good about keeping everything clean, because it's easy to get an infection. So I don't really enjoy using them, but I love knowing that I can use them. No worries about long outings or whatnot. A lot of doctors, even urologists, haven't heard of this. I had mine done at the local University hospital, which I believe is the only one around here that does them. They've been around for a long time though, so I don't know why it's not more common. ~e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 >There's no way I'll not be drinking and peeing 4 days/week for most of the day! I do it 5 days a week since I started working 13 years ago. It's not easy but it's practical. I used to have a paid helper who would come to my work at noon but when she quit I realized that I was having more " emergencies " because I would drink more thinking I could time it right. Since that wasn't working, I didn't hire anyone else. Now when I have a rare need to go at work, my husband comes to help. As for considering some kind of catheters, no thanks. I don't want " one more thing " (I already have the trach button, suction machine when I'm sick, motorized w/c, etc.). That's just me tho. Lori Re: Catheters Toileting has become one of my biggest obstacles recently. I have been feeling less confident in my own strength and beginning to fall or lose balance more often. I am toileting myself and transfering myself - only when I'm in my own apartment using my electric wheelchair. The difficulty comes in when I'm in another bathroom, even if the toilet is higher with grip bars around it. Typically I'm using the portable wheelchair which I cannot transfer in and out of on my own because it is not as steardy and is not the same floor-seat height that I have become used to for transfer. While I'm out, I rely on others to help me use the bathrooms which is a huge inconvenience for me to interrupt them and embarassing at times (depending on the person, typically I'm comfortable with my mother all the time and a couple of my close friends, but other friends it's uncomfortable with or other people that I haven't used the bathroom with before and I have to tell them how to help me while we're doing it. It's also uncomfortable if it's one of those times of the month, which I suppose you'll never get around - catheter or not!) I've been talking to my mom about alternative toileting methods. The problem is that I have the independence when I'm alone and in my apartment with my wheelchair and I don't want to compromise that ability for convenience while I'm out of the apartment on those few occassions. For now we're just dealing with the inconvenience and slight embarassment of public restrooms and fumbling with arms and legs and jeans and footrests in the way. I'm not really sure what else is available. I think that's a huge problem for most of the community. What IS out there for us to choose from? I need to know. This semester I'll be pulling 10 hour days at univ. There's no way I'll not be drinking and peeing 4 days/week for most of the day! > I think we've talked about this before, but I wanted to know what you all > think on an updated basis. Would any of you consider using a catheter to > urinate so you could drink more fluids during the day more often since going > to the bathroom is such a huge ordeal for most of us? Have any of you > already chosen that route? Are there ANY alternatives to spending from > 30-45 minutes using a Hoyer to go from chair to bed to get undressed, then > to commode, then back to bed to get dressed to chair, and then positioned??? > I'm nearing desperate status! > > Blessings, > Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 As I understand it, the Mitrofanoff (correct spelling) allows one to cath intermittently and it's right at the belly button. It requires a few days in the hospital and involves using tissue (the appendix or small intestine) to form the opening to the bladder. You can still pee through the urethra. The supra-pubic cath is always in there and is connected to a bag. It's a hole locate just above the pubic bone that heals into a stable opening after 3 months with the original tubing. After that, it will close up after 20-30 minutes if another cath is not in place. It's an out-patient procedure (15-60 mins) barring any complications related to being put under local anesthesia. You no longer pee through the urethra, though, may leak when spasming. At 05:17 PM 8/17/03 -0700, you wrote: >What is the differeence between the supra pubic, and the mitropronif (sp) >caths? can the cath be useed only when you need to pee so you dont havee >to use a bag---or dosee it neeed to be 'Flowing " all day? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2003 Report Share Posted August 18, 2003 Thanks so much! This seems like a perfect option for me at the moment and I'm going to look into this more. Could you just clarify for me the cleaning process? What do you do with the cup/tubing afterwards? Do you discard it? Save it? How do you clean it? ~Kendra > The little portable urinal I have is called the > Freshette, and you can see the manufacturer's webpage > here: > > http://www.freshette.com/usage.html > > It works OK...if i could change one thing, it would be > to make the little urinal cup itself just a little bit > bigger, but it does the job. I can't totally use it > by myself, because I still need help scooting forward > in my chair, but after my husband has helped me do the > scooting, I can hold it and do my business by myself. > > I have also figured out that pants are just too much a > pain in the butt for me to bother...so years ago I > switched to dresses and skirts, with no panties. I > know that's not for everyone, but it works for me. > > I didn't know if the Freshette would work for you or > not, but I did want to mention it as an alternative. > > Take care, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 Just got back from hols so sorry for late posting on this but holly have you tried the Freshette device?? I use it sometimes and can pee from my chair and wear no knickers most of the time (just hope a gust of wind dont blow me skirt up). xx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Donna,My understand is that everyone has a catheter during surgery for obvious reasons as one would not have any control over one's sphincter muscles LOL.For whatever reason, I have read that leaving the catheter in for women is standard procedure but not so for men -- perhaps it's because men don't have to sit to urinate.I don't know how this all impacts me since theoretically I don't need an elevated toilet seat with anterior approach -- but someone did say that it was very helpful and comfortable any way. Almost everything I have read either relates to the more standard posterior approach -- or has people almost dancing out of the recovery room with the anterior approach -- which I very much doubt -- major surgery is major surgery after all.I will put cranberry juice on my grocery list -- I wonder if pomegranate juice has the same benefits -- I do love a good pomegranate martini LOL.HelenOn Feb 27, 2007, at 4:42 PM, Donna Hart wrote:Helen, After surgery, I said absolutely no catheters. I got up and used the beside toilet from the first day. I did try the bed pan once when I was having trouble getting up, but it doesn't allow you to drain your bladder completely. You will be getting liquid through the IV, and have to go often. The nurses were very encouraging about me getting up every time. First, you're draining your bladder completely 2) You're up and moving, lessening the risk of blood clots. I did have UTI symptoms after surgery and again a month later. Though no infection showed up, I was still put on antibiotics both times. A cystoscope showed e! verything as okay. I still wonder if they used a catheter on me during surgery and caused some irritation. I forgot to ask my surgeon at my last visit. I read that it is not uncommon for UTIs to show up after joint replacement, although it didn't say why. Next time, I'll say no catheters during of after surgery. However, that approach may not work for everyone. My brother was in pain and had trouble going. They used the catheter on him once, and he was good to go -- so to speak ;-) -- after that. It wasn't fun for him, but necessary. Warn regards,Donna:I assume you got the URI from the catheter -- another experience which I am NOT looking forward to -- I am just trying to dwell on the "other side" when the constant pain is gone.. Need Mail bonding?Go to the Q & A for great tips from Answers users. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Helen, After the pain I suffered with my UTI or whatever the heck it was, I would rather just wet the sheets during surgery than have a catheter. They can put a diaper on me for all I care. I didn't wake up with a catheter, so I really don't know if I had one during surgery. This really has me thinking. I think I'll call my surgeon and check. I don't know if the pomegranate juice will help your kidneys, Helen, but a pomegranate martini will certainly help your attitude. Also, I have a great recipe that calls for cranberry juice, vodka, champagne and fresh mint and lime. I think it sounds very healthy with all those fresh ingredients. Excellent for pain management.:-) I had BTKR and don't know how I would have got along without my raised toilet seat. I had a friend who thought it would be a good idea for me to get out of the house and stay with her overnight at about three weeks post-op. It was the most painful night having to use a regular commode. When in doubt, I say get the raised toilet seat. Although I can't really advise you hippies yet. Someday, I'll be able to share that experience, but my new knees seem to have helped my hips tremendously. Warm regards, Donna jujulabee@... wrote: Donna, My understand is that everyone has a catheter during surgery for obvious reasons as one would not have any control over one's sphincter muscles LOL. For whatever reason, I have read that leaving the catheter in for women is standard procedure but not so for men -- perhaps it's because men don't have to sit to urinate. I don't know how this all impacts me since theoretically I don't need an elevated toilet seat with anterior approach -- but someone did say that it was very helpful and comfortable any way. Almost everything I have read either relates to the more standard posterior approach -- or has people almost dancing out of the recovery room with the anterior approach -- which I very much doubt -- major surgery is major surgery after all. I will put cranberry juice on my grocery list -- I wonder if pomegranate juice has the same benefits -- I do love a good pomegranate martini LOL. Helen On Feb 27, 2007, at 4:42 PM, Donna Hart wrote: Helen, After surgery, I said absolutely no catheters. I got up and used the beside toilet from the first day. I did try the bed pan once when I was having trouble getting up, but it doesn't allow you to drain your bladder completely. You will be getting liquid through the IV, and have to go often. The nurses were very encouraging about me getting up every time. First, you're draining your bladder completely 2) You're up and moving, lessening the risk of blood clots. I did have UTI symptoms after surgery and again a month later. Though no infection showed up, I was still put on antibiotics both times. A cystoscope showed e! verything as okay. I still wonder if they used a catheter on me during surgery and caused some irritation. I forgot to ask my surgeon at my last visit. I read that it is not uncommon for UTIs to show up after joint replacement, although it didn't say why. Next time, I'll say no catheters during of after surgery. However, that approach may not work for everyone. My brother was in pain and had trouble going. They used the catheter on him once, and he was good to go -- so to speak ;-) -- after that. It wasn't fun for him, but necessary. Warn regards,Donna: I assume you got the URI from the catheter -- another experience which I am NOT looking forward to -- I am just trying to dwell on the "other side" when the constant pain is gone. . Need Mail bonding?Go to the Q & A for great tips from Answers users. No need to miss a message. Get email on-the-go with for Mobile. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Hi all new and old! Welcome back to all the recent surgeries and good luck to all the upcoming ones. I did not have a catheter for any of my total joints. Both hips and shoulders and one hip revision. If I had one in the OR I did not know about it! I had the replacements starting in 1997. So I have the long scars from the middle of my butt and down the thigh. For the revision in 2004, I had a slightly shorter scar and was in overnight. So I guess you could say I was dancing out of recovery! Sue > > > >> > >> Helen, > >> > >> After surgery, I said absolutely no catheters. I got up and used > >> the beside toilet from the first day. I did try the bed pan once > >> when I was having trouble getting up, but it doesn't allow you to > >> drain your bladder completely. You will be getting liquid through > >> the IV, and have to go often. The nurses were very encouraging > >> about me getting up every time. First, you're draining your > >> bladder completely 2) You're up and moving, lessening the risk of > >> blood clots. > >> > >> I did have UTI symptoms after surgery and again a month later. > >> Though no infection showed up, I was still put on antibiotics both > >> times. A cystoscope showed e! verything as okay. I still wonder if > >> they used a catheter on me during surgery and caused some > >> irritation. I forgot to ask my surgeon at my last visit. I read > >> that it is not uncommon for UTIs to show up after joint > >> replacement, although it didn't say why. > >> > >> Next time, I'll say no catheters during of after surgery. > >> > >> However, that approach may not work for everyone. My brother was > >> in pain and had trouble going. They used the catheter on him once, > >> and he was good to go -- so to speak ;-) -- after that. It wasn't > >> fun for him, but necessary. > >> > >> Warn regards, > >> Donna > >> > >> : > >> I assume you got the URI from the catheter -- another experience > >> which I am NOT looking forward to -- I am just trying to dwell on > >> the " other side " when the constant pain is gone. > >> > >> . > >> > >> > >> > >> Need Mail bonding? > >> Go to the Q & A for great tips from Answers users. > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 > > > >> > >> Helen, > >> > >> After surgery, I said absolutely no catheters. I got up and used > >> the beside toilet from the first day. I did try the bed pan once > >> when I was having trouble getting up, but it doesn't allow you to > >> drain your bladder completely. You will be getting liquid through > >> the IV, and have to go often. The nurses were very encouraging > >> about me getting up every time. First, you're draining your > >> bladder completely 2) You're up and moving, lessening the risk of > >> blood clots. > >> > >> I did have UTI symptoms after surgery and again a month later. > >> Though no infection showed up, I was still put on antibiotics both > >> times. A cystoscope showed e! verything as okay. I still wonder if > >> they used a catheter on me during surgery and caused some > >> irritation. I forgot to ask my surgeon at my last visit. I read > >> that it is not uncommon for UTIs to show up after joint > >> replacement, although it didn't say why. > >> > >> Next time, I'll say no catheters during of after surgery. > >> > >> However, that approach may not work for everyone. My brother was > >> in pain and had trouble going. They used the catheter on him once, > >> and he was good to go -- so to speak ;-) -- after that. It wasn't > >> fun for him, but necessary. > >> > >> Warn regards, > >> Donna > >> > >> : > >> I assume you got the URI from the catheter -- another experience > >> which I am NOT looking forward to -- I am just trying to dwell on > >> the " other side " when the constant pain is gone. I had a catheter fitted but I specifically asked for this as the hospital I had my LTRK in in the UK doesnt have commodes/bedside toilets, so its a bedpan or catherter for the early days until you can get out of bed on your own to get to the regular toilet. I asked for the catheter to be fitted as I have an ongoing left wrist problem due to my left knee giving way last June and my falling a fracturing the left wrist and there was no way I was going to be able to balance on a bedpan with everything on my left side being basically out of commision!!! I also have ureter reflux, so need to empty my bladder fully every time I go to the toilet, I had the catheter in for 4 days and suffered no UTI or irritation at all. Marilyn > >> > >> . > >> > >> > >> > >> Need Mail bonding? > >> Go to the Q & A for great tips from Answers users. > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2011 Report Share Posted August 7, 2011 Well... I just spent six weeks trying to adjust to a catheter. Had a potential kidney infection and cooperated the best I could to doctor recommendations. But now I am trying to adjust back to life without the catheter because I hated it that much. At this point, two weeks after removing it, I am undecided as to which is worse -- with or without. Lifestyle choice, with a catheter definitely better, much more freedom. But it hurt a LOT. I will be happy to discuss more through e-mail. Just send me a note. Carla > > Hello All, > > All my life, I've been going to the bathroom " on demand " . I've reached a > point where it is simply becoming too onerous for me to be transferred on > and off a commode chair due to difficult- to- access attendant care. > > I'd like to hear from some of our female group members as to their > experiences with catheterization; in particular, the pros and cons of the > process. I'm interested in knowing things like is it difficult to bathe, is > pain ever an issue, and what other issues have you come across? I don't know > anyone who uses a catheter and I am keen to learn from some first-hand > users. > > Any suggestions/advice/recommendations you might have for someone > considering embarking on such a journey would be greatly appreciated. I'm > hoping this change will improve my quality of life even by allowing me to > drink more fluids which is always a good thing. > > Thanks in advance. > > Karyna > > > Quote Link to comment Share on other sites More sharing options...
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