Okay, this isn't the fun part, or the sexy part, but it is important. I'm sure that I'll repel any woman who reads this, but I'm willing to share, in the hopes that this can improve someone's life.
Paras and quads know they have an almost ever-present issue of which to be aware. This site will not attempt to provide all of the education about bladder maintenance traditionally provided in rehabilitation. But there are some issues of which to be aware when making decisions early-on. Things I wish I would have heard when I was first injured. Discussion of bladder-related issues important to making long-term bladder maintenance decisions can be found in the Newly Injured section of this web site. The section you are presently viewing will attempt to provide some new insights for bladder maintenance that some may not have previously considered. For those who have indwelling Foley catheters, I can provide a few tricks and insights learned over 20-plus years. But, for those who are on an intermittent catheterization program, I'm afraid I won't be of much help. However, veterans of intermittent cathing (or Texas caths) should feel free to send me Feedback to share your experiences. I'll try to update this section with input. Probably the most important topic for bladder maintenance is the whole urinary tract infection (UTI) issue. For this very important issue, I urge you to read the section called Stop The Meds! The first subsection on antibiotics is of primary importance, and could save you a lot of agony. It may even save your life (that's not being maudlin or dramatic). The most confining aspect of the catheterized bladder is the limited size of the urine collection vessel (usually a leg-bag). For paras or high functioning quads who can empty their own bags, this is not as much of an 'issue' as it is an 'inconvenience.' For us folks who don't have use of our hands, the filling and emptying of a leg-bag, and the dysreflexia that can come from a full bladder, is an almost always constant thing about which to be cognizant. When I'm at home or in the office for extended periods of time, I hook a larger, night-bag to the leg-bag to increase capacity, so I'm not constantly needing someone to help empty. But I drink a lot of water throughout the day, so I still need to pay attention to the bag ... just not as often. I buy the largest (4000 ml) night drainage bag sold by Bard.® A quick Google® search for BA153509 (part number) produces a number of sellers through which to buy the "night-bags." I know I’ll be using the bags for a while, so I usually buy supplies by the case, and get the discount. When we want added drainage capacity, the person assisting me just slides the end of the long clear plastic tube from the night-bag into the end of the green rubber hose at the bottom of my “leg-bag” (BA4A4174), far enough in so that it's snug and will not fall out (easier to attach when a little moist). Then – and only then – he or she opens the clip to let it flow. The leg-bag then drains into the night-bag (hanging in a plastic waste-basket, tucked under my desk) and the leg-bag doesn't fill until the night-bag fills. We do the same thing at night when I get in bed, rather than disconnect the leg-bag tubing from the catheter and reattach the night-bag to the catheter (like we used to). This system is easier, cleaner, and works very well. Besides, there is less introduction of additional bacteria at the catheter because I just leave the leg-bag attached all the time, until it gets old and it's time for a new one. There is some chance of introducing bacteria when connecting the night-bag to the bottom of the leg bag, but it is further from the urinary tract, and the leg-bags I buy have anti-back-flow protection. I don't feel a need to use Betadine® or alcohol wipes because I’ve exercised my immune system, so I'm not worried about infections (see Stop The Meds!). One of the things I learned fairly early on was the choice of catheter makes a big difference. Some catheters clog up more easily than others. A clogged catheter can be quite a bad thing. Before I started using all-silicone catheters, my catheter would clog fairly easily (I had one really bad incident with a super-high blood-pressure as a result of dysreflexia). Since I switched to all silicone catheters, I've not had a single clog, in likely 20 years. The amount of water I drink probably helps in that regard too (see Water section). But there are times when I'm unable to drink anything for many hours, and still don't have any clogging problems. Because I don't have any clogging issues, I'm able to go for several months with the same catheter. I was originally told that the catheter should be changed every two to four weeks. But changing a catheter causes additional trauma to the body, and is yet another potential source for introduction of new bacteria into the urinary tract. So I change my catheter very infrequently. For some, my plan may not be a good one. Indwelling Foley catheters can be a catalyst, or at least a harbor to bacteria, or a harbinger to infection. So changing catheters may remove the growing foothod. But for me, because I don't have any bladder infection problems (again, see Stop The Meds!), I can keep the same catheter longer. Some people have bad reactions (some allergic) to silicone or latex. This should be noted when considering bladder maintenance.
If you have catheter clogging potential, one trick you can try is to keep a large irrigation syringe [pictured], a small bottle of saline, and a Betadine® wipe with you. If you're caught somewhere and you think your bladder isn't draining, you can try to flush your catheter with some sterile saline, and force the mucous or other residue out of your catheter. You simply place the tip of the syringe into this saline solution and withdraw the plunger, filling it perhaps half way (less if your bladder is very full). Then wipe the tip of the syringe off with alcohol or Betadine® to kill off bacteria. Next, disconnect the leg or night bag tubing from the catheter (it helps if you have a Chux® or underpad handy to catch spilled liquids). Insert the disinfected tip of the syringe snugly into a catheter. Hold the syringe in the catheter to keep a good seal and inject the saline solution through the catheter. You can also try moving the plunger back and forth to loosen and even withdraw stubborn clogs. You can also try sucking the clog out with the syringe (without saline). Later, when it's more convenient, you can then change the catheter because it is likely going to clog again.
I've had so few problems with my catheters that I no longer travel with irrigation supplies or spare catheters and insertion trays. When I was first injured, I always traveled with those supplies, just in case of a clog. I keep an emergency kit (plastic toolbox) with a catheter, an insertion tray, and a large irrigation syringe in my van, but I no longer take it with me when I fly. That also avoids hassles at security checkpoints since heightened security after 9/11 (see Travel section). One absolute must for me is cloth leg straps with velcro to fasten around my leg. I was surprised to learn that some people still use the rubber straps that come with disposable leg-bags (like those in the picture above). My current choice of leg-bags, though, may not be the best system. But I cannot seem to find good velcro cloth leg straps for the more durable and larger-capacity latex leg-bags. I haven't worked very hard to find a different system, because my system works pretty well. But I'm probably in the minority, because I use disposable bags over and over (after reinforcing them at the seams with Plastiseam® made by Performix® (click here).Perhaps someone with a better system will share their solutions through Feedback. Another bladder-related trick involves the inevitable spills. No matter how careful one is, when dealing with leg-bags and night-bags, there will be occasional drips or spills. When that happens on the carpeting or bed, for instance, it's helpful to have carpet cleaner enzymes made for "pet odors" or "urine eliminator" handy (click here and here). I buy squirt and spray bottles, and keep them on hand to pour onto the carpet, right on top of the spill (after we first soak up as much urine as we can with a towel). We just let the enzymes sit in the carpet. It reduces the odor greatly. I have not yet tried other odor removal products (other than Ozium for the air, discussed below). For an amusing video of a "skunk test" with a product called SCOE 10X, click here. If you have had good or bad experience with this or other products, send us some Feedback. We'll take a look.
As with bladder maintenance, this section does not address the personal and medical details associated with bowel management, likely learned in rehab. More on those issues can be found in the Newly Injured section. This section will discuss some things learned over time that can assist in bowel maintenance. For those who are not newly injured, you may want to check out the Newly Injured section, nevertheless. That section contains some bowel-related things I wish I would have known or thought of 15 to 20 years earlier. You may also want to add some of your own insights, or correct something I’ve said through the Feedback section.
As someone with paraplegia or quadriplegia, one of the first things we learn about our bowels is there are going to be "accidents." They are not fun. They are an interruption to getting on with LIFE, and they are a stark reminder of our lack of control. Bowel accidents used to get me down a lot more, but they are something we learn to handle. They are simply a part of LIFE in a wheelchair. No sense in letting bowel accidents get you down.
How we deal with bowel accidents will make them more tolerable. First, they are nothing to be ashamed of, or feared. If you experience one in public, at a meeting, or in someone's home, for example, address it directly. You can say something like, "I'll have to ask you to please excuse me, my bowels have moved and that’s something that occurs once or twice a year without warning." It's just the way it is. Be aware that bowel accidents can and will occur, and have a plan in place to get cleaned up and re-engaged in LIFE. The sooner the better.
Odor control is important. The pet odor enzyme carpet cleaner mentioned above can also be helpful for cleaning wheelchair upholstery or cushions. A product called Ozium® is the best air cleaner I have found. It does not just mask odors in the air, it kills them. Some sell it fairly expensively, but others are reasonable. it works amazingly well. I take some with me when I travel. It is also important to clean your skin well after a bowel accident, because stool can cause skin-breakdown. When cleaning up, it is generally best to do so in bed. You can use chux to protect your bedclothes. You may also wish to consider cutting your underwear (and even your pants) off, in order to better contain the "damage." This will, of course, depend on the cost of your clothes, versus the utility of avoiding a mess.
Diet can be very important in your bowel maintenance routine. Pay close attention to what you eat and how it affects your bowels and stool. You may even want to keep a journal for a while, tracking what foods you eat and beverages you drink, until you learn how your body responds. Obviously, some spicy foods may have adverse effects (oysters are dangerous). You'll also want to pay attention to how much or how little fiber you eat, and how that affects your stools. You may want to consider eating more fiber or taking a fiber supplement. I found that Quaker® Oat Bran is a tasty source of fiber (with or without milk). But be careful not to add too much fiber. It can have detrimental effects. Water is probably the best thing you can give yourself to stay regular, and healthy.
Peristalsis is the natural process of the intestinal tract squeezing and moving food through the body. People with spinal cord injuries generally have less normal peristalsis. Able-bodied people assist in expulsion of feces with their abdominal muscles. You might want to consider electrical stimulation of your abdominal muscles during a bowel program. You can purchase "e-stim" units and self-adhesive electrodes on the Internet. You have to be very careful not to run electrical current through your heart (or your head). But I've found e-stim to be beneficial. It may even help a little to maintain some abdominal muscle (but I still have a little "quad belly").
One thing that I've found to help stimulate peristalsis, at least for me, is rubbing or scratching my head. I don't know why, and I can't begin to explain it. But it works. Not completely on its own, but it certainly helps. Maybe there's some connection, through or around the spinal cord, between the scalp space and bowel nerves. Another weird connection I discovered (unrelated to bladder or bowel issues) is if someone pulls on your arms slowly and firmly to the side, perpendicular to your body, it has a tendency to release or loosen your sinuses. Weird, isn’t it? Again, I don't know how or why it works, it just does.
The trauma of a digital stimulation bowel program can be pretty intense, and "painful" to the body. Sometimes so much that I think my body goes into a bit of shock, even though I can't directly feel the pain. At times, I would be so wiped-out and ill-feeling, following a bowel program, that I could hardly function until I got in bed and slept. You might want to consider talking to your doctor about the possibility of pain medication as a prophylactic to this kind of response. I take hydrocodone twice a week, one before each program, and no longer have any problems. I am very careful not to take pain medication more often. That's because I don't ever want to become addicted, and I generally don't want to take medications I don’t have to. But going into shock, mild or not, can't be good for a body. And only two times a week doesn't seem to be posing any problems (though doctors warn it can constipate).
That brings up another topic: the frequency of a bowel routine. I understand some people do their program every other day. Some people do a program daily. I'm told that daily programs of digital stimulation may or may not require suppositories. But in either case, they take approximately 30 minutes (sometimes longer). That's 3.5 hours a week for the ‘daily’ folks. I also hear the incidence of bowel accidents might be increased for those who have daily programs. The routine I eventually settled on works well for me. It's not perfect, but it's better than it was. I was surprised to find that I can have my program scheduled for Monday and Thursday, without increased frequency of accident (once or twice a year). I chose these days to allow easier travel to accommodate long weekends. There may be some correlation between less frequent bowel routines and slower metabolism, but I did not discern any. And I am happy to save the time, trauma, and expense associated with more frequent programs. Everyone has to figure out their own routine. But it is helpful to understand options that work for other folks.
Another thing people may not think about is the possibility of doing their bowel program while laying down. Intuitively, one would think sitting up on a commode would allow gravity to assist in the process. But it doesn't work that way, and gravity can have some pretty harmful effects on the intestinal tissue, resulting in prolapse (hemorrhoids). "Self-simulators" may need to be in a commode, but there are options. The key to bowel programs in bed is appropriate body positioning. You must lay on your left side because the transverse colon goes from right to left. You also want to be mindful not to have your legs lay atop your catheter/leg-bag, or one another, in order to avoid pressure-sores. You should also consider "Magic Bullets" as opposed to Dulcolax®. They are simply faster. For the e-stim idea, the pain medication, and the bowel suggestions here, you should consult your healthcare professional before implementation.
More ideas and details can be found in the Newly Injured section. Not great cocktail party topics, but hopefully of some assistance.