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Thread: I feel finished

  1. #1

    I feel finished

    Paralyzed since 1983 been fighting bowel problems last 2 years. These photos might seem a little graphic but an explosion happened this morning and now there are spots like this on the floor from the kitchen to the bathroom and I am horse from screaming. Now sure I have ever felt this way, I feel done. I just stopped cleaning and decided to write this post. I had a date planned this weekend we were going to do the biggest motorcycle run in Oregon called Rhodie Days but I am not going now because no matter how hard I clean I cant get rid of the dirty paralyzed guy smell.

    I had to retire early because of bowel problems.

    After taking a shower and cussing and screaming and hitting my legs my hand hurts and I hate my body. I grew up in a logging community where if something isn't working its because I haven't hit it hard enough. Don't worry I live alone the only DV here is between me and my legs. I have limited feeling and no control of my bowels infact I feel my bowels are not finished right now and doing their thing again! lol

    I sit here fantasizing that I have only 1 day to live and I fire up the wood chipper and starting with my feet doing to my body what it has been doing to me. 30 years of Hell has its paybacks, Name:  photo (19).JPG
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Size:  129.2 KBName:  photo (20).JPG
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Size:  165.6 KBsuckers....
    Last edited by backwoodsrider; 05-12-2015 at 02:45 PM.

  2. #2
    All I can say is that can relate and know the feeling. Movements like that are usually tied to what you ate. When I eat certain foods I'm on guard immediately afterward. Conversely, certain foods will block me up and I'll go days, or almost a week without going.

  3. #3
    Senior Member pfcs49's Avatar
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    I can totally relate! It sucks when our bodies sabotage us. I'm 20 yrs T12. I've had 3 major ulcers on my right foot. One was an open wound for ~14 years then healed 4 years ago. Then one opened on the other side and was nearly closed 3 weeks ago! Now, in 3 weeks, the old wound opened up to huge proportions as week as a nasty one one the back of my heel and the existing one is worse! I just about want to give up!
    This was a week ago-it's even worse now. I have an appointment with wound-care in 2 days.
    I don't know why the picture is so big-sorry-I guess this is the wall of horrors!
    Attached Images Attached Images  

  4. #4
    backwoodsrider,

    I would seriously consider having a colostomy. Many here have had it done and are very happy they did.

    here's some threads- http://sci.rutgers.edu/forum/search....archid=1318397

  5. #5
    Senior Member pfcs49's Avatar
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    But, what I wanted to suggest to you: 2 years ago I had my first and only pressure wound. Because of location, a colostomy was required.
    Permanent? Temporary? I said, WTF, make it permanent. I've spent enough time on the toilet and trying to clean up my messes!
    It has proven to be a good choice! I hardly ever had bowel accidents or diarrhea, but still, putting my stuff out front certainly made it easy to deal with! And that little TV in my bathroom never gets watched anymore! Just in time saved, it's worth it.......so I can tend to my wounds!

  6. #6
    Thanks yeah a colostomy is in my future too but I need to get about 20lbs of crap out of my intestine first doctor says and I have been trying since September. Dang that's a serious pressure PNC49, I have a small one on my foot too and have a bag over it because I had a mess in the shower today.... lol I feel better after posting going to get back at it, have a good day everyone

  7. #7
    Senior Member lynnifer's Avatar
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    You're not alone.

    What worked for years in bladder and bowel management changes after ?25yrs or so. Frustrating as hell! I'm 30yrs in and struggling with this.

    I had a fall in late February and have had diarrhea since.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  8. #8
    That's odd Lynnifer wonder why after your fall? Tomorrow I am looking in to getting a colostomy

  9. #9
    Senior Member lynnifer's Avatar
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    I really stretched my abdomen as I tried to hold on and not connect with the floor. lol My nurse thinks it's a coincidence because my chair's broke (manual) and I'm not moving around as much. We shall see. Chair should be fixed by the end of the week (I hope).

    If in one week with my chair it doesn't improve, I'll have to see about a scope or something. With Fampyra my bowels had become so easy ... what a shame!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  10. #10
    Backwoods Rider, I can relate.

    I think I've told you the story of my ileostomy. (A colostomy wasn't an option; the colon was a problem, due to other factors).

    Again, best thing I ever did. I have finally found the right system (was good for about 9 months, then lots of breaks, finally after getting tired of only getting 2 day weartime and that leaking I switched systems and have been good for 3+ years, this year will be year #5 from original surgery).

    I rarely have major leaks now (i.e. even the system breaking is rare, but changing / washing my clothes is even rarer) - but when I do, or I have a bladder wreck (more common...) I have a good cleanup system that may help your chair.

    I live out in the country and so I do this cleanup outside with a hose and truck brush (less work and energy expenditure that way). I also have a spare chair just for these purposes. If you don't have an outside hose turned on right now, you can consider the feasibility of doing this in your bathtub / bathroom (it would probably work really nicely if you have a roll in shower).

    I begin by cleaning myself up, at least well enough that I'm not going to contaminate my extra chair as badly. This often means I'm wearing my second set of clothes because usually the clothes and the chair got nailed (I have bladder wrecks moreso than bowel wrecks). If you are doing this in a wheeled shower chair as an extra chair in your own home, good enough...just close the drapes and ensure your washing machine is ready. If you are doing it outdoors, best to wear clothes

    You will need a couple of things:
    5-gallon bucket works well
    Truck brush works well (short truck brush is fine, just long enough to reach your chair...or use a regular scrub brush without a handle)
    Dish soap, or laundry detergent + color safe bleach. Unless you do a color test, I don't recommend regular bleach. I've had even just a mist discolor black things (thankfully, black socks...not my chair).

    For the laundry, I have had excellent results with any free & clear laundry detergent (family is allergic to everything that is not free and clear) -- except "All". I find "All" does not get my clothes as clean and leaves stains unless I wash it a couple of times. Then for color safe bleach I use Purex 2 or Clorox 2 (it will be specifically marked as color-safe bleach).

    Then I take my chair to the place I'm going to wash it. If you take it to your bathroom you may have to do this in pieces but it should be okay.

    All my upholstery comes off the chair. That can include a sling back or soft part of a hard shell back (and the foam). I set those in a place where I know they are dirty and will take them to the washer soon. I also take my cushion. If I've done the cushion well (peed through it), I will take out the foam part and the cover and put them in the washer separately. If it's just sweat smell, I might just open the zipper instead of separating the two.

    If these are very soiled, no problem. Either rinse them with water only, or the soap solution detailed below, then take them in the bucket to the washing machine and put them in.

    If you have any other stuff that can come off your chair and go in the washing machine, remove it. This includes foam. If you have a gel-pack cushion or back you may have to separate the soft cover (to washing machine) and then rinse the insert separately with the 5-gallon bucket solution and your brush and leave it to dry in a clean place, like your rinsed tub or outside in a clean part of grass.

    If the covers are heavily soiled, consider rinsing them with water (and your bucket solution if you like) - then transporting them in your bucket to the washing machine (so they don't drip everywhere). Remove and put in washer.

    Take all washable items to the washing machine. Use a good dose of free & clear laundry detergent + a good dose of color-safe bleach. I generally use the default settings on my washer ("warm water, spin speed high (instead of highest), soil level highest," and a couple of extra rinses (2-3)). I also have Sanitary settings (very hot water though, generally warm is better, shrinkage happens at very hot) - and "heavy duty" settings I can use if needed.

    Start the washer, then go back to your chair. It should be bare bones about now...seat sling, no back except hardware...that sort of thing.

    Fix up your 5-gallon bucket if you haven't already. I generally use water and dish soap, but can add color-safe bleach if I really nailed something.

    Take off the rear wheels. I like to do the least soiled surface first (if there is one), generally the frame and then the wheels. If you have a gel insert, you'll need to add that to your list. If you have removable sideguards and armrests, take those off, rinse (to get wet) and then scrub them, then rinse (to de-suds) again. Repeat with a gel insert or the plastic part of a hard back if you have it. As you get these decontaminated, put them in a clean place - either a part of your yard/bathroom that's uphill from the rest of the washing, or on a towel on the bathroom counter / sink. Then go to the frame of the chair. Start with a rinse to get the chair wet, and carefully rinse off any solids if they still remain. Then use your brush and bucket to scrub the chair. Make sure you get in all kinds of spaces, nooks, and folding mechanisms, including the camber bar and back hinges. I generally flush out things like my camber bar with a good dose of lots of water. Again, put this out of the tub on a towel if you can, then wash the wheels in the tub. Rinse, scrub with soap, and rinse again, tires too. Those go to the towel if you can still fit them on. Rinse down your tub, bleaching with water + regular bleach if you feel like it, then rinse the tub walls. If you want, you can put the chair back in the tub to drip dry (be sure to tilt it to the sides and upside down to get all the water out of the camber tube and other open tubes).

    If you have just a small space (i.e. bathroom tub, or small bathroom), you will have to adjust instructions to accommodate space.

    If you feel the need, you can dump the 5 gallon bucket since it is dirty now, and refresh the bucket with more soap/detergent and repeat the procedure. Be sure you thoroughly clean nooks like casters.

    Then allow your chair to dry. I generally don't towel off my chair unless I'm on a time crunch. The sun and the wind (outdoors), or even a bathroom heater (in winter) is generally fast enough (I have a spare chair). Just remember you will need to tilt the chair on its side to ensure effective camber tube draining.

    When the washer is finished (do not put them in the dryer!!), check the items for cleanliness and re-wash in the washer if necessary (usually not, in my experience). Then you will need to let the items air dry: either hang them outside in the wind (I put a cable up between two posts, or hang them on a lawn chair) - or somewhere in the house that has airflow (maybe bathroom with the heater or fan on). Remember if you go outside that you will need clothing or a robe to be socially acceptable .

    Then I reassemble the chair when everything is dry. If I used my extra chair (rather than a shower chair if you have it, shower chairs are easier to clean) - I will determine if I need to run a second load to wash it. If my extra chair is clean enough, I will take a shower and clean myself up while chair #1 is drying (and before I reassemble it). If I need to, I can wait until I've reassembled chair #1, then wash my clothes and chair #2, and take a shower for me, getting back in the reassembled chair #1 until chair #2 is ready to be put back together.

    I've cleaned up hardwood floors with vinegar water before (from animal wrecks). I have tile throughout in my home so I just use my trusty bleach spray bottle.

    And yes, an ostomy is far easier to care for than a bowel program and everything that comes along with it, in my opinion. The night that my ostomy gear broke and I still had to drive home (you can change on the road but it was less effort for me to drive home), I put towels around my front and around the seatbelt and was just fine. Yes had to wash my clothes and the towels but that's easy, that's why I have a HE front loading washer.

    Take care. You are doing the right thing by posting and reaching out for support. I know for me it makes me feel less alone.
    Mystery

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