Christmas Day – a good time to put things in perspective

Christmas Day – a good time to put things in perspective

            I occasionally mention to friends that I was in medicine during the Golden Years: after penicillin and before HMOs. Medical advances continue to explode and HMOs no longer seem to have the dictatorial power that they had for a time. Things were good for physicians during the Golden Years, less so for patients. I am truly grateful for the advances that have made it possible for those of us who have endured bladder cancer to survive and to continue with life as usual for most hours of the day.

            The Indiana Pouch and similar procedures, including the neobladder, have only been around for a little more than one generation. Before that, bladder cancer victims had to deal with surgical procedures that increased the risk of infection and left them with limited social mobility. 

            Anesthesia was much different when I began my medical career more than 50 years ago. I recall dripping ether onto a face mask, and had none of the instantaneous readouts of a patient’s vital signs that have made intraoperative complications rare now. . Post-op nausea was common back then; hospital stays lasted many days.

            Today, radical cystectomy and construction of an Indiana Pouch take several hours but the anesthesiologist has an array of drugs and equipment that make an 8-hour procedure safer than ever, with post-op nausea only an occasional problem.

            This Christmas season, let all of us IP-ers rejoice. We were born at the right time!

When it’s hard to insert the catheter

When it’s hard to insert the catheter

            Most of the time the catheter slips into the stoma easily, especially when you use a little lubricant. At other times – thankfully few – it gets a little ornery. There are a couple of reasons.

            It doesn’t take long for most of us to figure out what direction to aim in when we insert the tip of the catheter and it’s pretty consistent. Although the colon-turned-bladder doesn’t really float within the abdomen, it’s not anchored in place, either. The segment of small intestine (ileum) that leads from the pouch to the exterior may shift a little, especially if a person has been constipated for a few days and there is a sizeable accumulation of stool to push it this way or that. It doesn’t take much to change the orientation of the ileal segment.

            Another cause is simply spasm of the ileal segment.  When stimulated by touching, the bowel tends to react by contracting, thus clamping down on the catheter. Just whistle a few bars and the spasm will subside.

            It’s important not to push too hard or too fast on the catheter. The lining of the intestine is fragile and you might cause some bleeding. Frank perforation is unlikely.

            Don’t try to withdraw the catheter too quickly. That will also cause the ileal segment to contract and clamp down on the tubing. Another reason to withdraw the catheter slowly is to drain all the urine. The colonic pouch that serves as a bladder is more irregular than the original urinary bladder and it doesn’t have the elasticity that the old bladder did. It sometimes takes a little manipulation to completely empty it.

           

Let’s count our IP blessings.

Let’s count our IP blessings.

            A recent post on another blog site consisted of a lamentation about the misery of bladder cancer, of having to wear a bag, etc., etc. It’s likely that all cancer victims, even long-term survivors who are safely out of the woods, have experienced anger, sadness, guilt, frustration and even depression at various stages of the illness.

            I am not a Pollyanna. On the other hand, when I consider that for most IP-ers, life is pretty normal except for a cumulative one hour a day (about 6 cathing episodes, each requiring roughly ten minutes). Having to haul around the items that we need, even when going out to a restaurant or a movie, the occasional leak – that usually occurs when we don’t expect it – and even the loss of sexual function are a good deal less important than being around for a few more years to enjoy a grandchild’s giggle, an evening with friends, a walk along the beach, the opportunity to write a memoir or the zillion things that call forth an attitude of gratitude.

            I also recognize that some of us have to contend with radiation, chemotherapy, big-time leaks, stones in the pouch, infection and stoma issues. A century ago, bladder cancer patients would have gladly endured each of these, or all of them, to hear a few more of those kiddie giggles.

Do you have a support group?

Do you have a support group?

            If you have an Indiana Pouch it’s a good bet that you don’t know of many others with one. Even though bladder cancer is among the 10 most common forms of cancer it appears that other forms of diversion are much more common than the Indiana pouch. For example, in my local ostomy support group of about 60 members I am the only one with an IP. In spite of that, I find that associating with that group provides support and encouragement.

            Every metropolitan area has such a group. Your first source of information should be your surgeon or your ostomy care nurse. The local medical center can probably direct you to one, and it’s likely to meet in that facility.

            The United Ostomy Association of America, Inc. (UOAA) can direct you to a group in your area. That organization (www.ostomy.org) provides a large base of information about both colostomy and urostomy, a newsletter, a magazine with helpful information and a discussion board (www.ostomy.org/forum). It also provides a free magazine for new ostomy patients.

            The Bladder Cancer Advocacy Network (www.bcan.org) is another organization with a very active participant group. The direct link to their subscription page is inspire.com/invite/?ref=as&asat=13022384. On any given day you will find several discussion topics and loads of input from subscribers.

            Interacting with persons with similar problems will often lead you to answers for which you didn’t even have a question.

Are abdominal exercises OK for persons with an Indiana pouch?

Are abdominal exercises OK for persons with an Indiana pouch?

            Getting back to an exercise routine as soon as your surgeon gives you clearance is important. Regular physical activity will improve your mood, give you more energy and boost your immune system. Everyone should exercise almost every day and it should include both aerobic (walking, jogging, swimming, cycling) and resistance type (weights, machines) exercise, preferably on alternate days.

            Almost any ordinary exercise routine will contribute to strengthening your abdominal muscles and sit-ups aren’t necessary. Even walking will help to strengthen your “core” muscles, including your back and abdomen.

            Anyone starting an exercise routine after a long layoff needs to have a physician’s clearance. Bladder cancer patients are usually older than 50, the age at which silent problems such as hypertension and type 2 diabetes become more common.

            Unless you are well-versed in exercise physiology it is prudent to have a session or two with a fitness center trainer or a physical therapist in order to know how to exercise safely. Age is certainly not a barrier to exercise but as we get older our range of motion is sometimes limited, joints are not as well cushioned and tendons are more fragile. It’s important to start slowly. There’s no need to hurry.

            Specifically, abdominal exercises are not harmful once you have been exercising regularly for a couple of months. Strengthening your abdominal muscles will not harm the stoma.

            Occasionally persons develop an incisional hernia – a defect in the abdominal wall at the surgical incision. In overweight persons with a weak abdominal wall that is a genuine risk.

How do you clean/sanitize/sterilize your equipment?

How do you clean/sanitize/sterilize your equipment?

            As I noted recently, it isn’t necessary for the things that you use when you catheterize your Indiana pouch to be sterile. In my opinion, however, the catheter should be the sterile, single-use type. For those who must re-use catheters, anything but meticulous cleanliness is an invitation to infection.

            Your irrigation syringe and fluid/saline container should be kept as clean as possible. My choice, based on my surgeon’s advice, is to rinse them several times immediately after use with plain water and then to rinse them with a 50/50 solution of white vinegar (acetic acid). When possible I let the vinegar solution remain in them for an hour or so.

            I have seen blog posts that recommend a turkey baster instead of a syringe. The inside of the bulb is hard to clean and there’s no way to see inside it.

            Bleach is not a preferred disinfectant for a couple of reasons. First, it needs to be in contact with the surface in question for at least 10 or 15 minutes. Second is the stain problem that every housewife knows when a few drops land on the wrong item of clothing.

            Alcohol has an undeserved reputation as a disinfectant. After all, wine “turns” as a result of the growth of microorganisms, which actually thrive in the alcohol environment. Alcohol works sometimes – but don’t rely on it.

            Germs hide in protein-containing material, hence the need to clean catheters carefully. Mucus can form a bacteria-protecting film on the inner (invisible) wall of the tubing.

            The bottom line: there is no perfect disinfectant. Cleanliness is paramount.

Flying and train travel with an Indiana pouch

Flying and train travel with an Indiana pouch

            Travel with an Indiana pouch really isn’t much of a problem. In July 2011 we described the various kits that we put together for trips of varying duration. The toilet facilities on trains and planes are small and a little cramped but they have enough counter space to lay out your supplies. The very best situation is the facility with a diaper changing station, common in hotels and rest stops but not on the typical commercial airliner. (Will the new Boeing Dreamliner be the exception?) Even men’s restrooms often have diaper changing stations. That should be a legal mandate.

            I have found that the biggest challenge is an area flat enough to open the catheter package. In the worst case you can tuck it into one of those paper seat cover dispensers. Guys can tuck the paper sleeve into their trousers and so can women who wear slacks. Another option is the waste dispenser, which usually has a metal flap that closes with a spring and will hold the sleeve in place.

            The easiest solution might be to use the facility in the airport waiting area, which almost always has restrooms with a diaper changing area. Most domestic flights are shorter than four hours and making an extra pit stop might be the best option.

Are hand sanitizers worth using?

Are hand sanitizers worth using?

            It isn’t necessary to use sterile surgical technique when catheterizing an Indiana pouch but we encounter numerous sources of bacteria in ordinary living and it makes sense to minimize the chances of transferring bad bugs to the pouch where they might cause infection.

The best way to prevent disease transmission is thorough handwashing with ordinary soap. The procedure should take at least 20 seconds, about the time it takes to hum two verses of “Happy birthday to you.”  Use water as warm as you can tolerate and air-dry or use paper towels.  If you use a cloth towel it should be one that no one uses but you.

A waterless hand sanitizer is a good back-up and sometimes it’s the only thing available. It’s an indispensable part of our travel kit.

Be wary of the alcohol-type sanitizers. Alcohol really isn’t a very good antiseptic. In fact, microbiologists sometimes use growth media that contain alcohol in order to cultivate certain types of bacteria. A cursory swipe like the one that lab techs use before they draw blood from you is more to get off surface dirt than to kill germs.

There are only a few published studies on hand sanitizers but the most effective ones so far are those that contain benzalkonium chloride. That substance has been used as a clinical antiseptic for decades. Although there are a few exceptions, bacteria are not likely to become resistant to it.

Some persons might develop irritation from using a hand sanitizer that contains benzalkonium chloride but the addition of allantoin tends to reduce it.

Will the ER folks know about your Indiana Pouch without an ID bracelet?

Will the ER folks know about your Indiana Pouch without an ID bracelet?

            Even before I underwent my radical cystectomy/Indiana pouch I had read about the value of wearing a medical identification bracelet. If you happen to be brought to the emergency room alone and unconscious after an accident it’s possible that the medical staff will try to catheterize your bladder in order to a) verify that you don’t have a kidney or bladder injury and b) monitor your urine output. If your stoma is a cosmetic masterpiece, integrated into your bellybutton, no one may be aware of it.

            A catheter inserted into your urethra won’t go very far and it obviously won’t yield any urine. Besides wasting precious time it could lead to an erroneous diagnosis. The stoma may leak eventually but that may take some time depending on the circumstances of your injury and your state of hydration

            Medical ID bracelets are commonplace. Medical responders know to look for them.

            They vary from plain stainless steel ($24.95) to 18-k gold ($2600). Yes, that is twenty-six hundred dollars! Some of the pricey ones look more like ordinary jewelry and the relatively inconspicuous medical symbol might be easy to overlook in the complicated and busy atmosphere of an emergency room setting.

            My rather plain ($44.95, no tax or shipping) stainless bracelet is engraved with my name and phone number on one side and the medical information (radical cystectomy Indiana pouch) on the other.

            Persons with a more complicated problem may want to use a vendor that includes access to the patient’s medical history for an additional fee.

Will an Indiana pouch mess up your body chemistry?

Will an Indiana pouch mess up your body chemistry?

            The segment of colon that replaces the bladder works well as a reservoir but it allows chemicals such as hydrogen ion and chloride to get back into the bloodstream. The resultant excess in the blood of hydrogen and chloride ions produces hyperchloremic acidosis in some Indiana pouch recipients. Luckily, most patients will escape this problem but there are factors such as poor kidney function that make it more likely to occur.

            The tendency toward acidity can lead to loss of calcium from the bones, increasing the risk of osteoporosis. It’s not that simple, however, since there are several other factors that contribute to osteoporosis. Bladder cancer is a disease of the older generation, in whom osteoporosis has become increasingly common. The main cause of this condition is lack of exercise, not calcium deficiency. Studies have confirmed that simply adding calcium to the diet will not prevent fractures.

            Some patients with an Indiana pouch develop vitamin B₁₂ deficiency but that is also not necessarily due to the revised anatomy. Vitamin B₁₂ is absorbed from the last portion of the small intestine but only a scant few inches are used to form the Indiana pouch. About 10 percent of seniors develop vitamin B₁₂ deficiency for other reasons.

            A simple blood test can identify hyperchloremic acidosis and treatment consists of taking sodium bicarbonate. This should only be done under the supervision of a physician. Self-medication could cause other problems.

            A special type of x-ray examination can indicate osteoporosis or the stage that precedes it, called osteopenia.

            The blood test for identifying vitamin B₁₂ deficiency is not entirely reliable but all seniors ought to be on a daily multivitamin anyway and should be checked periodically for anemia due to other causes.

Tape causing irritation around the stoma?

Tape causing irritation around the stoma?

            Some persons are sensitive to the adhesive material on paper tape or bandages. Applying a thin coating of over-the-counter 1% hydrocortisone cream is usually all that it takes to reduce the redness and irritation. Stronger steroid creams might work a little better and faster but they are more likely to cause thinning of the skin over time.  

            Hydrocortisone cream relieves a myriad of skin problems but it shouldn’t be overused. Like any medication, use only as much as is necessary to fix the problem.

            Yeast infections near the stoma are more likely in persons with diabetes. Using hydrocortisone cream might relieve the redness a little but it is not likely to clear it completely. Sometimes a yeast infection will be characterized by “satellite” lesions about a millimeter in diameter at the margins of the affected area.

            If any readers have some other thoughts on this topic, please respond. We welcome your input.

Should you stockpile urostomy-related supplies?

Should you stockpile urostomy-related supplies?

            The relatively brief but widespread power outage that hit the Southwest in September should make us think about being prepared to get along without our usual source of urostomy care supplies like catheters, dressings, pads, tape, lubricant, etc. in the event of a much more prolonged situation.

            The emergency kits that we described in July are designed to get us through a week or two. The folks in tornado-ravaged Joplin, those flooded into isolation in Vermont and refugees from the fires in Texas had to survive without their usual suppliers for a much longer period.

            The kinds of items that we need might not be readily available from FEMA or the Red Cross if we are subjected to an event like those. A weeks-long power outage would make it impossible for your local pharmacy’s cash registers to work. A catastrophic interruption in fuel supplies would prevent restocking from warehouses hundreds of miles away. You could probably re-use catheters – but only if you had a safe water supply.

            The American Red Cross and other agencies provide lists of emergency supplies that every family should have on hand. For those of us who need more than the ordinary first aid supplies, a little extra planning can spare real discomfort, or worse.

Why you shouldn't restrict fluid intake

Why you shouldn’t restrict fluid intake

            Indiana pouch patients quickly become aware that restricting fluid intake lets them go an hour or two longer between catheterizations, a useful device to avoid interrupting travel or a social event. That’s OK for special times but it shouldn’t become a habit.

            Inadequate intake of fluids is an invitation to dehydration, especially among older persons, the group that is more likely to have had bladder replacement surgery. Don’t rely on thirst to let you know when you need fluid. The thirst mechanism is quite unreliable in persons over the age of 60. Dehydration causes fuzzy thinking, poor concentration and it increases the risk of falls. In IP patients it causes mucus to become thicker.

            In normal persons as well as in those with an IP, inadequate fluid intake over time increases the risk of stones within the pouch or the kidneys. If you have a personal or a family history of kidney stones you should take extra care to avoid dehydration.

            Whether from an Indian pouch or a normal bladder, urine should always be light yellow and there should be only a mild odor. There are so many factors that affect urine volume (food and fluid intake, ambient temperature, humidity, physical activity, altitude) that the oft-quoted “8 glasses  day” doesn’t make sense. If you’re lounging outside on a cool day it’s too much; if you’re doing yard work on a hot, humid day it’s too little.

Catheterization and cleanliness

Catheterization and cleanliness

            In multiple studies over several decades, thorough handwashing has been found to be an effective way of preventing transmission of harmful germs from one person to another. Potentially dangerous bacteria surround us and coat every object that we touch. That includes things that we don’t seem to think about, like computer keyboards. Yet, even in places that we should worry about, like public toilets, many users breeze right past the bank of sinks on the way out the door.  

            Catheterizing an Indiana pouch doesn’t have to be an absolutely sterile procedure but it should be as clean as is practical. Ordinary soap and warm water work fine; antibacterial soaps are not necessary and some authorities feel that they select out resistant germs over the long run. That probably matters in the hospital but not in your home, so use an antibacterial soap if it makes you feel more secure. 

            How long should handwashing take? Use the same routine that some infectious disease specialists recommend: lather as long as it takes to sing two choruses of Happy Birthday.

            As a little extra insurance I use an antibacterial foam just before picking up the catheter. That’s probably a little overkill but the extra peace of mind costs only pennies.

Bleeding from the stoma

Bleeding from the stoma

            An occasional spot of blood might appear on the dressing that covers the urostomy. That’s no big deal, since the mucosa, the lining of the small intestine that forms the opening, is somewhat fragile.

            Frank blood in the urine is another matter. There are several reasons, including trauma to the pouch somewhere between the stoma and the new bladder during insertion of the catheter. Other causes include infection and stone.

Cancer within the pouch is a remote possibility and it sometimes causes bleeding.  But be reassured: after more than 20 years’ experience only about a half-dozen cases have been reported. If you have had a personal or family history of multiple polyps of the colon, consider discussing pouchoscopy with your urologist. It makes sense to look at the colon-become-bladder at least as often as your gastroenterologist recommends colonoscopy.

            Obvious blood in the urine is always an indication to see your physician without delay.

Supplies: saving out-of-pocket expenses

Supplies: saving out-of-pocket expenses

            Most persons with an Indiana pouch are old enough to be on Medicare, which covers the cost of catheters and some other supplies. There are items that are our own responsibility and I’d like to share my experience in regard to a couple of them.

            I had quite a shock when I paid $4.40 for a single roll of paper tape at a local chain pharmacy. Motivated to go online, I found the identical item for 72 cents.

            My favorite irrigation syringe comes with a tray, fluid container and towel and is made by Bard. It costs $2.78 online. It is not the least expensive set and it’s meant to be single-use. However, with proper cleaning and a 50-50 vinegar/water rinse it lasts for at least a week before getting too stiff to work easily. Less expensive syringes become unusable after a few irrigations.

            If you prefer sterile 2 x 2 gauze pads instead of (unsterile) cotton rounds, the cost at the pharmacy is considerable. They are available online at a fraction of the local retail cost. Cotton rounds are usually available at the Dollar Store for half price.

            My online vendor is Quality Medical Supplies. I have no financial interest in any company and you might find others that are even less expensive. Please do share that information with me and readers of this blog.

Is there any reason to measure pouch output?

Is there any reason to measure pouch output?

            Once you get to know what the character and the volume of your pouch are like you can probably simply attend to the business of emptying it. However, for the first few weeks or months mucus production will vary and the capacity of the pouch will gradually increase.

            If you drain the catheter directly into the toilet bowl it’s hard to appreciate the amount and the character of the urine, i.e., if it’s concentrated and you’re behind on fluids, if it’s cloudy and possibly infected or if there is a small amount of blood present. If there’s lots of mucus the flow might be very slow, making it hard to tell if the pouch is really empty.

            Eighteen months after surgery I’m still emptying the pouch into a measuring cup placed in the bathroom sink. An inexpensive plastic one with a capacity of one quart works fine. You’re not likely to ever put out more than 1,000 ml at a time and it’s easy to pour it into the commode.

            Volume, of course, will vary with fluid intake, ambient temperature, physical activity and other factors. I aim for an output of about 100 ml per hour.

            I use the measuring cup when I irrigate to be sure that I’m getting out as much irrigation fluid (sterile saline) as I put in.

Protect the stoma

Protect the stoma

            The visible opening of the Indiana pouch is actually the lining of the small intestine. Nature never intended for it to be exposed to the environment for years but it does hold up pretty well in spite of that. There are a couple of reasons to keep it covered. 

            The cells that make up the lining of the intestine produce mucus constantly. It may not be much and it can easily be absorbed by a cotton round or 2 x 2 gauze pad. The former is a little more gentle on the exposed mucosa and the surrounding skin. Some Indiana pouches leak more than others; the cotton round or gauze are at least a little protective.

            Having never been without the cotton round or gauze I don’t know how susceptible the stoma is to the chafing of clothing but I’d rather not cause any irritation there.

            Some IP-ers add a little more protective absorbency with nursing pads or sections of feminine napkins. The former are more expensive but they work out well for those who only have to replace them every couple of days.

            If any readers can suggest alternatives to these ideas, feel free to reply to this blog.

Does cranberry juice prevent pouch infections?

Does cranberry juice prevent pouch infections?

            For decades, some physicians have recommended that persons prone to bladder infections drink up to a quart of cranberry juice every day. The success rate, as shown in several studies, is about 35%. Chemicals within cranberry juice prevent some strains of the E. coli bacterium from adhering to the bladder wall.

            There are no studies yet on cranberry juice and Indiana Pouch infections and there probably won’t be any in the near future, if ever.

            First, a pharmaceutical company can’t patent cranberry juice, so why spend the money on research? Considering the small number of patients with an IP, Ocean Spray, which markets about 70% of the juice in the U.S., probably won’t do any studies, either.

            Second, pouch infections aren’t common, although some unfortunate patients get them repeatedly. The lining of the IP is much different from the lining of the original urinary bladder and the presence of colonic mucus might have either a positive or negative effect on potential infecting organisms. After all, the human colon tolerates most strains of E. coli very well.

            Finally, drinking up to a quart of cranberry juice every day is a challenge. It’s one of the reasons that research studies get scratched – too few participants can drink that much juice every day for the year or more that it takes to gather meaningful statistics.

How often to irrigate an Indiana Pouch

How often do you need to irrigate?

            After reading numerous blogs and medical journal articles on this subject I’ve come to the personal conclusion that one irrigation per day (about 200 ml. or five 40-50- ml syringefuls) is worth doing. Here’s why.

            Stone formation within the pouch appears to be more common in persons who irrigate infrequently or not at all. Components of mucus might provide the nucleus for a stone. It takes a year or more, in most people, for the colon to slow down its mucus production. Although I produce less mucus after more than a year than I did in the first couple of months, I’m still surprised occasionally by the large amount that is present. (The next time I go to a Chinese restaurant I’ll avoid the egg-drop soup!)

            Sometimes the largest amount shows up in the third or fourth syringeful. It also helps to vary the position (depth) of the catheter. Unlike your bladder that left the hospital before you did, the new one does not have a smooth interior but has some nooks and crannies – not very scientific terms but descriptive.

            If you make it a practice to irrigate at about the same time every day it will become a habit but not a burdensome one. 

            Guaifenesin might help to reduce mucus. We'll cover it in a later blog.

Check with your surgeon to be sure that he or she agrees with this opinion.

Emergency IP kits for the compulsive

Emergency kits for the compulsive IP-er

            If you’re a worry-wart like me or a survivalist you might consider these extra kits.

            For the emergency automobile trunk backpack: in addition to the fire extinguisher, first aid kit, flashlight, emergency blanket, a few bottles of water and food bars and whatever else you’ll think you’ll need when stranded in an hours-long traffic jam, or worse, we IP-ers have some special needs. I keep the equivalent of the Day-Tripper (see last week’s blog) in the trunk backpack.

            Bug-Out-Bag: Survivalists know all about this. Our Southern California family has had to evacuate in minutes because of wildfires and we each have a backpack with water, food bars, first aid kit, cash, extra clothing, etc. Now I have IP supplies as well. My IP B.O.B. contains enough supplies for four days, about half the contents of the One-Weeker.

            I rotate all my perishable supplies and my catheters, gel and saline every six months – January and July. That way, nothing gets wasted but we’ll be ready the next time a fire roars up the canyon behind our home. Your catastrophe could be a flood, hurricane or tornado. Not being able to pee might also be a catastrophe.

           

IP Travel Kits

Travel kits for IP-ers.

            The One-Shot. This is small enough to fit in my jacket pocket, and ladies have even more options. It’s for brief outings like the theatre, restaurants, etc, and an emergency in case of an unexpected leak. I haven’t had to use it yet.

            Contents are in a zip-lock bag with one each: catheter, packet of lube, 2x2 gauze pad, 1/3 sanitary pad, folded paper towel, hand sanitizer, paper tape, large spring-type paper clip to hold my shirt out of the way.

            The Day-Tripper. This is the one that is always with me in my vehicle. A small camera bag is ideal; a small fanny-pack works fine.

            Contents: 4 each of catheter, lube, gauze, pad. One hand sanitizer, clip, a couple of small zip-lock bags for disposal if needed. Two folded paper towels.

            The One-Weeker. A soft computer case with 50 catheters (packed at the last minute – few of us have that many extra) and matching numbers of lube packets, a sleeve of cotton rounds, a full roll of paper tape, a liter of sterile saline or your favorite irrigation fluid, syringe and fluid container, paper towels, about 10 absorbent pads, a few zip-lock bags, hand sanitizer and shirt-holding paper clip. I pack a large (24” x 30”) disposable pad in case of a night-time leak at a hotel or someone else’s home.

            Next week’s blog: emergency kits for the compulsive.

Have Indiana Pouch, will travel.

            Plan ahead. For a car trip we aim for a 4-hour pit stop at a nice facility such as a Hilton Garden, Marriott, etc. Their restrooms almost always have a diapering station, even for dads – perfect for laying out the items we need, or at least a handicapped stall with plenty of room.

            I’m prepared to cath early at 3 hours if traffic up ahead is likely to be heavy. One extra catheterization per day is no big deal if it will avoid being stuck with no place to go.

            You probably won’t have to irrigate during a day trip unless you have a young IP and still have lots of mucus.

Airplane lavatories are cramped but still have enough counter space. If you do have to have saline for irrigation in your carry-on, a letter from your doctor should take care of that problem to get through security.

Be sure to make a practice run at home to be sure that you will have everything you need in your travel kit.

I have five (!) different kits for travel – will cover them in later blogs.

Irrigation solutions

Irrigation solutions

What is the best/safest/least expensive/practical irrigation solution for an Indiana pouch?

            My surgeon recommends sterile normal saline, which costs more than $10 per liter. One liter lasts about a week, a fair piece of change in a year -- a problem if you don’t have insurance coverage. It is sterile, with a long shelf life and it is probably the safest irrigation solution available.

            Is sterility critical? No, since the IP usually has a few benign bacteria in it, as noted in an earlier post. However, be sure to maintain every element of your irrigation – hands, catheter, irrigation solution, solution container, syringe, etc. -- scrupulously clean. You don’t want to replace the good bacteria with the bad ones.

            Does it have to be a “physiologic salt solution” like normal saline?  Normal saline is neither too concentrated nor too dilute so that it can be given intravenously. The normal urinary bladder and the bowel-become-bladder can tolerate both a concentrated (“salty”) or a very dilute urine, so tap or distilled water are both OK for irrigation. Again, the emphasis must be on near-sterility, so boil your water.

Avoiding infection

Almost all IPs contain some bacteria. Studies show that they are the same types that occur in the large bowel but apparently the pouch and bacteria have reached a truce and they don’t usually cause infection. That truce does get broken occasionally and most IP-ers can expect to have a UTI eventually. Here are some thoughts on minimizing infection. We'll cover cranberry and other products another time.

            Use disposable catheters whenever possible. Medicare patients are eligible to receive up to 200 catheters per month. (Tips on care of reusables in a future blog.)

            Drain the pouch as completely as possible every time.

            Follow your doctor’s orders regarding irrigation. Most recommend it daily.

Maintain extreme cleanliness of the irrigation syringe. Although I have seen recommendations for using a turkey baster, the bulb is difficult to clean and can’t be visually inspected. I re-use “disposable” syringes for about a week, rinsing them first in tap water and then in a 50-50 vinegar solution after each use.

Gloves are not necessary but thorough handwashing is a must. A hand sanitizer adds to protection but handle the catheter and syringe carefully anyway.

Thoughts about stoma care

    These comments are in response to remarks that I have seen on this blog and others, and result from my own observations
.
    I cover the stoma with a "cotton round" (suggested by my wife, who uses them to apply skin care products) after having gone a few months using 2 x 2 gauze pads. The cotton rounds are more absorbent and less irritating than the gauze. They are held in place by paper tape. The tape is slightly irritating (the subject of a future post) but that hasn't changed in nearly 1 1/2 years.
    Leaks are inevitable and unpredictable so I cover the cotton round with 1/3 of a sanitary pad -- only the end third since the absorbent granules tend to drift from the cut ends -- also held in place with paper tape. The smaller (not "maxi") pads are less bulky but still hold a lot of fluid. A built-in benefit is that they mask odor very well.
    I haven't noticed any change in trouser waist size, a concern of one blogger.

A future post will deal with the mucus issue. I invite your questions and comments as I do the research.

Stone formation is fairly common in persons with and Indiana pouch. Infrequent irrigation appears to be one cause. Check with your urologist to determine how often you need to irrigate.

            There are other factors that increase the risk of stone formation in those with normal plumbing as well as persons with an IP. Be sure that your urine doesn’t become too concentrated. It should always be light yellow with only a mild odor.Your fluids needs vary greatly according to your size, activity, the weather, humidity, etc. Don't put too much stock in "8 glasses a day" or similar suggestions.

            A generation ago physicians advised persons with a tendency toward kidney stones to be on a low-calcium diet but we now know that the opposite is correct. Too little dietary calcium allows oxalate, which is especially high in plant foods such as spinach and rhubarb, to be absorbed.

Sharing ideas

This blog originated on June 10, 2011 for the purpose of sharing ideas among persons who have an Indiana Pouch.

I am a pediatrician and underwent total cystectomy (urinary bladder removal) because of cancer in March, 2010.
During the past year I have learned from various sources as well as trial and error how to return to a relatively normal life, how to avoid leaks and infection, and how to make emptying the pouch a simple routine, even for travel.

I plan to post a new message every Sunday, to include one tip per week.
This Sunday's tip: Arrange for your physician to prescribe one-time-use catheters. Medicare will provide 180 per month as well as 180 packets of lubricating gel. Re-using catheters will almost guarantee eventual infection of the pouch.