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.