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Thread: Perhaps not a very bright future for me atm. :-(

  1. #1

    Default Perhaps not a very bright future for me atm. :-(

    I went for my appointment at the joint continence clinic on Tuesday last week. (Both faecal and urinary consultants working together and running the clinic together)

    His interpretation of the results of the testing that they performed before Christmas were actually incorrect, due to excessive nerve damage/deadness.

    During the actual test, when she put the balloon thingy in my back passage, she inflated it to 280 (don't know what it is measured in) before I had any sensation of something in my back passage, the consultant, on Tuesday, said that a normal person would feel a strong urge to empty their bowels at around 60. (something) Even that much over the norm, I only had a mild sensation that I needed to go, it actually felt more like a little fart was coming out. (Based on comparing with the level of sensation prior to being poorly, I have NO idea when I am going to fart any more so that in itself can be embarrassing!)

    So the results of this test made my consultant think I had a rather large distended (? Is that the right word, I can't remember what he said, and I'm stuck for which word I need, basically he thought it was very large and round like a football (but no so big as a football!)) rectum. After examination on Tuesday, (bleugh, just bleugh!) he realised that my insides were normal and that the nerves were at fault.

    He is sending me for more testing, he said something about doing xrays of my back passage, so I presume that will entail them pumping something in, from which end I have no idea. *insert scared face*

    He said that based on what we have found out so far, the only solution they could think of would be a colostomy bag and he asked me how I felt about that, I said I was willing to do ANYTHING to not crap myself any more, and to be able to go out, without worrying about WHEN my bowels are going to cause an embarrassing accident. At present I leave the house once in a GREEN moon, (probably no such thing, I'm just trying to show a scale of rarity) and then only for medical appointments. He said that they would do their best to find a better solution than that, but I would *HAVE* to have one fitted in the perhaps not so distant future anyway.

    On the urinary side, my consultant has prescribed me vesicare again in an attempt to calm my bladder down and stop it from pushing the catheters out so often. (Longest I have kept one in so far is 3 weeks) He also prescribed Buscapen (sp?) to try and stop the bladder spasms. He also requested that I increase the size of catheter to hopefully prevent the bypassing so much. They want me to try 14ch instead of 12ch, and even go up to 16ch if 14ch makes no difference.

    He also suggested I consider a suprapubic catheter instead, I said "unless they could stitch me up so I don't leak from my urethra" that it was not an option, I was half joking when I said it and he replied that it was actually an option, should I wish to change to suprapubic… (?really?!)

    Just got to wait for the xray testing in Stoke Hospital now, then they will decide how to go from there.

    On the side of not soiling ever again, the future is acceptable should I opt for a colostomy… but the thought of *having* to have one in the future scares me somewhat.

    What do you guys think of colostomy bags? :/

  2. #2

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    I tried to do some research on this stuff just so I could try to be of some sort of help here but to be honest I'm still confused so please forgive me if I come across as ignorant. I don't want you to think of your future as not very bright, and I really wish you all the best. Maybe I don't really have a place to say, and I probably didn't do as much research as I could.. but I don't think there is anything undignified at all about a colostomy bag at all. The concept of any surgery scares me so in that way I can understand the fear of a colostomy, though it does sound like there are some different emotions that I'm not picking up on as to why you are afraid. I'm guessing the necessity of it, feeling like it's your only option?

    I really do wish I could be of more help here, and I really wanted to wish you luck with this and know that even if I don't understand fully your situation.. that I'm rooting for you. I hope my post isn't bothersome in anyway.

  3. #3

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    Quote Originally Posted by gigglemuffinz View Post
    I tried to do some research on this stuff just so I could try to be of some sort of help here but to be honest I'm still confused so please forgive me if I come across as ignorant. I don't want you to think of your future as not very bright, and I really wish you all the best. Maybe I don't really have a place to say, and I probably didn't do as much research as I could.. but I don't think there is anything undignified at all about a colostomy bag at all. The concept of any surgery scares me so in that way I can understand the fear of a colostomy, though it does sound like there are some different emotions that I'm not picking up on as to why you are afraid. I'm guessing the necessity of it, feeling like it's your only option?

    I really do wish I could be of more help here, and I really wanted to wish you luck with this and know that even if I don't understand fully your situation.. that I'm rooting for you. I hope my post isn't bothersome in anyway.
    Hi Sweetie,

    Thank you very much for your reply, your post is not bothersome in the slightest *hugs*

    I am not afraid as such, just I feel a bit like a lost cause. They said that I would need one eventually anyway, it is just the stone cold reality that my nerves are probably not going to get any better, but most probably worse over time. so yes, feeling as if there is no other option (other than to poop myself, which for me is NOT an option) it is rather daunting.

    However, I have to retain my upbeat and positive attitude…

    On the bright side, I can always mail the used bags to people who upset me lol

  4. #4

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    Quote Originally Posted by CaptainVimes View Post
    Hi Sweetie,

    Thank you very much for your reply, your post is not bothersome in the slightest *hugs*

    I am not afraid as such, just I feel a bit like a lost cause. They said that I would need one eventually anyway, it is just the stone cold reality that my nerves are probably not going to get any better, but most probably worse over time. so yes, feeling as if there is no other option (other than to poop myself, which for me is NOT an option) it is rather daunting.

    However, I have to retain my upbeat and positive attitude…

    On the bright side, I can always mail the used bags to people who upset me lol
    Well, from what I can tell you are an amazing person, and nothing is going to change that. I can totally understand why that situation would be daunting, but I think it's so strong of you to remain upbeat and positive about and even throw in a funny joke.

    Keep on being amazing! Thanks for being really nice to me. I was sort of nervous about posting but I'm glad I did.

  5. #5

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    First, let me say that I'm so sorry all of this has come down upon you. I have a friend who has a colostomy bag because of colon cancer. She learned to live with it quickly, as she at least survived cancer. She did have times when the bag overfilled, making a mess, so you have to be careful to empty it before that happens. It's still probably a better alternative to messing one's diapers and not being able to go out in public.

    Eight years ago, my wife, who is diabetic, had the bones in her foot collapse and then get infected with MRSA. For six years, I did wound care on her. During that period, she had many operations, before the foot finally healed. For most of that time, she got around riding on her electric cart. In other situations, I pushed her in a wheel chair. We both had to make big adjustments. Over night we went from a normal couple, able to go wherever and whenever we wanted, to that couple with the wife in a wheel chair. I've written about it in my novel. It was a very difficult adjustment.

    We were forced into a situation where we had to reassess life, and make the best of our situation. Getting out was better than her staying home in bed or sitting in a chair. Restaurants learned who we were. She rode her cart through department stores. We even went out on the bike/walking trail, she riding and me walking along side her.

    Life goes on, and if you can resume an almost normal life, where you can go to the store, a restaurant, a baseball game and not have to worry about running to some place to change, I think it's a plus. Life has to go on, so don't give in to the stumbling blocks that get thrown in our way. When you get your bag, pump your fist into the air and say you have won.

  6. #6

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    As far as I know if ur not gonna consider diapers then colostomy is the only other way, but i think there are a couple ways they can do colostomy so there maybe something to consider there. I have a cousin with a colostomy as a result of complications at birth, the only thing i can really say about colostomy is it stinks...BAD(worse than regular IMO), but really only during changes and when u release the pressure(i.e. gas). Idk what i would rather deal with though honestly. The one upside to colostomy is if u ever want to clear a room, vengeance is only a valve away and always within arms reach.

  7. #7

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    Quote Originally Posted by askmelater47 View Post
    As far as I know if ur not gonna consider diapers then colostomy is the only other way, but i think there are a couple ways they can do colostomy so there maybe something to consider there. I have a cousin with a colostomy as a result of complications at birth, the only thing i can really say about colostomy is it stinks...BAD(worse than regular IMO), but really only during changes and when u release the pressure(i.e. gas). Idk what i would rather deal with though honestly. The one upside to colostomy is if u ever want to clear a room, vengeance is only a valve away and always within arms reach.
    Pmsl! I am up for revenge!

  8. #8

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    CaptainVimes,

    Hi, I'm JD and I suffer from moderate bowel incontinence due to an old accident that left me with severely damaged nerves in my anus and rectum. I lost most of my ability to sense an approaching bowel movement, as well as much of my sphincter control. I also have a defecation order and cannot pass a large, firm stool (or balloon). You and I seem to be sharing somewhat similar problems.

    I have been through all of the usual diagnostic tests at a specialty incontinence clinic at a major research hospital, plus follow-up physical therapy to strengthen my pelvic floor.

    That being said, I have things under reasonable control (not perfect, but reasonable). My gastroenterologist said that he never has seen anyone succeed so well at controlling fecal incontinence. My solution was not surgery.

    With the approval of my doctors, I self-administer preventive enemas each morning to prevent a bowel accident later in the day. Don't laugh - they work. These are traditional saline and soap bag enemas, not chemical Fleets.

    After the enemas, I can go about my normal life during a 12 - 14 hour safe zone. I am able to achieve 96-97% accident-free days, which is an excellent outcome. I even go on extensive international travel, taking my enema kit with me, of course. I recently came back from a very long cruise from Istanbul back to the States. I had no accidents during a 35-day period!

    I do wear a diaper 24/7. However, on most days I will not have messed in it.

    Do NOT rush to have surgery! Consider my option and discuss it with your doctor. A colostomy bag is not a pleasant long-term outcome and should be avoided if possible. Please note that, if you try the preventive enemas and they do not work well for you, you can still have the surgery later.

    I have written a serious paper on the use of preventive enemas to control fecal incontinence. My gastroenterologist's Physician's Apprentice has reviewed it and was very complimentary. A doctor of internal medicine is reviewing it now. It is both very informative and will serve to stimulate a dialog with your physician on the topic. One of my doctors has recommended that I publish it. If you have an interest in reading the paper, send me a private message with your email address and I can either email it to you or provide a link to a copy on DropBox.

    Best wishes,
    --JD

  9. #9

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    Quote Originally Posted by dogboy View Post
    First, let me say that I'm so sorry all of this has come down upon you. I have a friend who has a colostomy bag because of colon cancer. She learned to live with it quickly, as she at least survived cancer. She did have times when the bag overfilled, making a mess, so you have to be careful to empty it before that happens. It's still probably a better alternative to messing one's diapers and not being able to go out in public.

    Eight years ago, my wife, who is diabetic, had the bones in her foot collapse and then get infected with MRSA. For six years, I did wound care on her. During that period, she had many operations, before the foot finally healed. For most of that time, she got around riding on her electric cart. In other situations, I pushed her in a wheel chair. We both had to make big adjustments. Over night we went from a normal couple, able to go wherever and whenever we wanted, to that couple with the wife in a wheel chair. I've written about it in my novel. It was a very difficult adjustment.

    We were forced into a situation where we had to reassess life, and make the best of our situation. Getting out was better than her staying home in bed or sitting in a chair. Restaurants learned who we were. She rode her cart through department stores. We even went out on the bike/walking trail, she riding and me walking along side her.

    Life goes on, and if you can resume an almost normal life, where you can go to the store, a restaurant, a baseball game and not have to worry about running to some place to change, I think it's a plus. Life has to go on, so don't give in to the stumbling blocks that get thrown in our way. When you get your bag, pump your fist into the air and say you have won.
    Hey,

    Thank you so much for your comforting and supportive reply, with us having to empty my leg bag frequently, I could always work on a process of us doing them both at the same time I guess.

    We also went through pretty much the same scenario with myself, on the day things hit the fan, we had just completed the kids' christmas shopping, a week before Christmas 2006, my bad leg (at the time I just had a very bad knee from an accident at work in the Aug of '05) gave way quite a bit even in my metal brace when we were walking back to the car, I suddenly felt very tired when we got home so I went for a nap, when I awoke I literally couldn't walk or talk, it was as if I had a stroke, completely slurring all my words, in my head it felt as if everything was going in slow motion, apparently I was talkingand moving like that too. Things just got gradually worse from that day onwards, until I am at my current state now.

    My whole life as I knew it, destroyed in one innocent couple of hour nap in an afternoon.

    I have a wheelchair out of the house, but I cannot self propel so Simon has to push me everywhere. We tried a mobility scooter and I was a danger to everyone within 10m of me, and to myself, i nearly wiped out 3 aisles in a supermarket, it is just something I cannot do.

    If I had known back when it was "just a dodgy knee" that I would have to write off my entire independence etc within a few months, I would have insisted we had gone to the beach more often, I would have enjoyed our walks along the disused railway line and canal (whilst the children were at school) even more. I would have spent more time chasing my children around the garden and sitting down to play with them more often… I would have made the most of being able to "hobble" around and actually do things for myself…

    However, I do not look back in regret, nor look forward in remorse, (is that the right word?) I am happy that I did get to do everything I did do, and that I still have my family, my beautiful children, my amazing life to remember, to think about when struggling through my darkest days.

    At least I am not dying faster than old age is creeping in, right? Yes! right! *imagines herself throwing both fists in the air chanting "I WILL beat this!"*

    Thank you again Dogboy. *hugs*

  10. #10

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    Quote Originally Posted by askmelater47 View Post
    As far as I know if ur not gonna consider diapers then colostomy is the only other way, but i think there are a couple ways they can do colostomy so there maybe something to consider there. I have a cousin with a colostomy as a result of complications at birth, the only thing i can really say about colostomy is it stinks...BAD(worse than regular IMO), but really only during changes and when u release the pressure(i.e. gas). Idk what i would rather deal with though honestly. The one upside to colostomy is if u ever want to clear a room, vengeance is only a valve away and always within arms reach.
    So, I would get to do some horrendous eye watering and nasal hair singing farts on demand, quite literally on tap?! THAT will be useful in stuffy waiting rooms hahah

    Incidentally, how often is gas release required? sorry, I will try to sound more serious when genuinely enquiring, instead of sounding vindictive and playful.

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