A blog on sabbatical

A blog on sabbatical

            Since June 2011 we have posted more than 25 articles that have addressed major issues encountered by persons with an Indiana Pouch. In searching the medical literature and reviewing blog sites such as the Bladder Cancer Network, we have concluded that going into more detail on medical issues would not be productive.

            We will take a sabbatical while continuing to research topics of interest to IP-ers.

            Thank you for having visited this site, and for your comments. We will monitor it regularly in order to respond to your posts.

Timing is everything

            If you have had an Indiana Pouch for more than a few weeks you probably have figured out a schedule for catheterizations. Medicare provides 6 catheters a day for a month – 180 in all – so it’s likely that most of us can expect to drain the pouch about every 4 hours. Life should be so simple!

            An every-4-hour routine usually works out pretty well but there is an occasional surprise overflow at 2-3 hours and sometimes an 8-hour stretch can go by if we’re not paying attention, and there is no leak. This has been my experience and I’m curious to know if others agree.

            Our daily life and social activities hardly ever match the 4-hour routine. I find that an early cath is a good idea just to avoid being someplace where clean facilities are not available or you don’t want to have to leave a play or movie in the middle of a performance. If you notice that your recent fluid intake has been more than usual it might be a good idea to drain the pouch a little early in anticipation.

            There is some reason not to go for long periods between catheterizations on a regular basis. Urine can back up into the kidneys and lead to hydronephrosis – a ballooning of the kidney’s collecting system that can interfere with normal kidney function. The actual likelihood of this complication seems to be quite small, however. Even though the junction between the ureter and the new bladder is theoretically not able to prevent back-up of urine into the kidney, it doesn’t happen very often.

            Routinely holding back on fluid intake in order to extend the interval between catheterizations is also not a good idea. The more concentrated the urine, the more likely is the formation of stones within the kidney or bladder.

Note: Beginning this month the blog will be published only twice monthly. Feel free to offer suggestions for topics that will be of interest to the IP community.

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.