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.