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|Post Hospital Survival Guide|
or coming home with your new baby Indiana, kock, miami or mitrofanoff pouch
If you are reading this, you have either decided or agreed to have the radical cystectomy [RC]. You are probably wondering what life will be like and how to live with your new equipment. The Bladder Cancer Webcafe has much information about survival in the hospital, the surgery itself, the diversion options, and the other treatments. The information on this section is drawn from the experiences of several warriors who had the RC and chose the internal Indiana pouch continent diversion. There is much overlap with the surgical recovery for those who have chosen the neobladder and the ideal conduit [the external bag], so this page may be helpful to others as well.
Please read about the radical cystectomy surgery, the Hospital Survival Guide and Ask the Nurse sections on the Webcafe. We also recommend the excellent booklet published by the American Cancer Society, the “Continent Urostomy Guide,” by Fleischer and Wise. Your doctor or ET nurse may have this on hand for you. The United Ostomy Association [800-826-0826] is also an invaluable source of information and support for making this transition.
Most of the information you need will come from your surgeon, your surgeon’s nurse, the enterostomal [ET] nurse, and the floor nurses who will work with you in the hospital after your surgery. We are sharing our first hand experiences here, and hope it is helpful. As “pouch people,” we all went through that awful moment of coming home from the hospital, dragging our drainage bags behind us and wondering how we were going to get through the next few weeks, and whether this was going to be what life and survival looked and felt like forever. It does get better.
In the Hospital
This is some variation in how different surgeons work, so your post surgical equipment or plumbing arrangements may not exactly match what we are describing here. In those first few days, your surgical nasogastric tube and stents may be removed, if you had them. If you look down your belly when they change your dressings, you will see your incision stapled or stitched closed, and two or three large resident surgical catheters which continuously drain your future urinary reservoir, one entering through what will be your stoma, and the other[s] entering your abdomen through other incisions. These catheters are connected by tubes to drainage bags that hang from your bed frame, and you will carry them when you go for your daily walks in the halls along with your IV pole. You will probably go home with them as your pouch needs more time to heal.
The nurses will be monitoring your liquid intake and output. They will also show you how to change drainage bags and keep them clean, and also how to irrigate. This is an important healing function in terms of washing saline through the pouch and allowing it to drain. You will continue to perform this function on your own at home during your recovery, and this may be part of your regular pouch maintenance later on. Your doctor may remove the surgical staples or stitches on your incision before your discharge.
Some people go home with dressings and tape over the incision, and around each catheter insertion. Others go home with just steri-strips over the incision. There is a lot of variation. You may also be sent home with small fabric adhesive catheter holders, one stuck on each thigh, which keep the catheter tubes from pulling on the incisions.
You will need loose comfortable warm clothing and shoes with stable footing for the trip home. If you are being driven home, be sure to use your seat belt, perhaps with a small pillow or bubble pack around the belt to protect the incision.
And please, no low riders or little low sports cars for that trip home; you may be able to get in but you won’t be able to get out!
You will need to hang your drainage bags from the bed frame. The overnight bags have little hooks or ties for this purpose. The bags should be hung lower than your hips so gravity helps with the drainage. You can also put them on the floor near the bed, but be careful not to step on them or trip on the tubes when you get up.
Unless there is some sort of significant complication or concomitant illness or condition requiring additional assistance, there is usually no need to make your home into a hospital room, renting or purchasing all sorts of special medical equipment. This period of incapacitation of early surgical recovery lasts a relatively short time. Depending on the availability of help at home or if there is a post surgical complication, however, some people may decide to have a visiting nurse or home health aide for a few days. Don’t be afraid to ask for help from family and friends. You will need it in those first few days. Many people have trouble asking for help, or even talking about what assistance they need, but it is really almost unavoidable at this time. You can kiss their feet in gratitude later.
You will have to decide which is the safest, most comfortable and easiest system for you to use: showering with the night drainage bags or leg bags; removing the bags and capping the tubes [with the little plastic corks which come with the bags] for the few minutes of the shower; putting the drainage bags on the floor inside the shower/tub or outside the shower/tub, etc. Check with your nurse about which method they recommend for you. If your bags are on the floor, be careful about stepping on one and accidentally pulling on a drainage catheter. If you do leave them outside, you may find a large puddle on the floor.
If you are still feeling shaky, especially if your shower is in the bathtub, think about scheduling your shower for a time when someone is at home who is able to assist you. The process -- showering, drying your healing body, changing the drainage bags -- can be exhausting. Sit back when you’ve finished showering, relax and bask in the joy of feeling clean.
Washing yourself around the incision may look daunting. You may have had a lot of science fiction movie fantasies about what could happen and what it all looks like. The nurses in the hospital will show you how to remove the dressings if you have them. Your doctor or nurse will tell you whether they want you to keep the incision area dry or not. If you are allowed to wash the area, in the beginning it is best to lather the upper part of your body well [your heaving bosom or your mighty pectorals, depending on gender] and then step under the water and just allow the soapy water to rinse down your body over the incision area. With further healing you can gently use a soapy hand to clean the incision area. Then just pat the area with a clean towel and reapply your dressings. If you have to keep the incision area dry, your nurse will explain how to do this.
Long skirts or dresses are an option for women, but in cold weather, the management of pantyhose, surgical catheters and leg bag straps is a puzzle that might be too challenging to be worth the effort. Thigh high socks or stockings are a possible solution. Remember, if you are self-conscious about your leg bags showing in public, skirts require an extra degree of attention.
Wear stable, comfortable shoes; leave the spike heels for later. Put your underpants on over your leg bag straps, put your socks on under your leg bag straps. With experience, you’ll figure out what works best for you. You may have to resort to cotton briefs rather than boxers or bikini underwear for a while. Briefs will help hold any bandages in place, and the elastic won’t rest on the incision.
Later on, when you start to self-cath, plan your clothing for easy stoma access. Trousers with a front fly usually work best, and will stay up while allowing you to expose the stoma area. Later on, with practice, you will find that you can manage skirts, pantyhose and all other clothing complications. You may also want to make sure that your trousers have that little vertical strip of cloth behind the zipper; this will protect your incision.
Many warriors have reported that they felt colder than others around them in the weeks and months following the surgery. Just have a sweater handy and don’t let anyone look at you funny or give you a hard time if you feel cold in July.
Once home, many people experience pain mostly when changing positions. Most major body movements come from the belly, so that area will hurt when you go from sitting to standing or the reverse, or from lying to sitting to standing. You will have to experiment to find the best way to move. Sitting in a firm chair with arms is helpful. Stay off soft sofas for a while. You won’t be able to get up from it on your own. If you had a hysterectomy, you may notice some interesting pelvic floor sensations when you sit down or rise from a chair.
Care of your bags
Getting to know your pouch
How to cath
Imagine yourself taking a trip on the tip of a catheter from your skin to your reservoir. Whether your stoma is in your navel or on your abdomen, you have to get from the outside of your belly to deep inside your body. You will go from your skin, through the stoma, into a tube which passes through body fat, then your abdominal muscles, between various abdominal organs, through the continence mechanism valve, and finally, with a slight pop or bump sensation, into the reservoir. When first learning to cath, you will naturally bend forward to look down. This may compress your stoma and internal organs, making insertion more difficult. You may want to stand in front of a mirror, take a deep breath and look at the ceiling—this will raise your rib cage and minimize any resistance as you insert.
The stoma is the opening through the skin into your body. It is the end of a tube which has been constructed from a piece of your bowel, appendix or fallopian tube, and brought to the surface where it was stitched or stapled or crazy glued [just kidding] to the opening in the skin. As with any area of healing, this area may contract a bit, and cathing may be more difficult until the body gets used to having it. If it feels tight, some people find it helpful to place the tip of the catheter in the opening of the stoma, and press very gently and slowly, breathing deeply and gradually “breathing” the catheter in. Insert the rest slowly.
Most warriors use a drop of surgical lubricant on the tip of the catheter to ease insertion. The most common are Surgilube [which comes in 2 and 4 ounce tubes, and small 3 gram foil packets for ease of use and portability away from home], the ever popular K-Y Jelly, and various drug store house brands. This should be a water soluble lubricant and many brands are also antibacterial.
The direction the catheter takes once in your body may depend on the fullness of the pouch, the fullness of the bowel, your posture, etc. The direction you insert may also shift over time. As you learn to cath, you will get to know how far you need to insert in order to enter the reservoir and get the flow started. In addition, the first inch or so of insertion may be painful or irritated if you are inserting at the wrong angle. Once your catheter is inserted, gently feel your belly around the stoma. You may be able to feel your catheter under the skin for an inch or so before it starts its inward course. If, for example, you feel your catheter’s path at a vertical angle above the stoma, then you will know to insert your catheter in an upward direction. You can do this by pressing a finger just underneath the stoma and then inserting the catheter at a 45- degree upward angle for the first inch of insertion, it will then go in smoothly. Slowly withdrawing the last part of the catheter at the same angle will minimize irritation by the catheter eyes of that same tender area just inside the stoma. If that discomfort persists when removing the catheter, try rotating it just a tiny bit as you withdraw to ease passage.
Sometimes it seems to take a moment for the flow to start even though you are in the reservoir. Be patient; you can cough, whistle, think watery thoughts, rotate the catheter a tiny bit, move it in and out an inch or so, bend over a little, or think of England. The flow will start.
When withdrawing the catheter, make sure the bell of the catheter is lower than the eye end; if not, the remaining contents of the catheter will spill out of the eye end and leave a graceful trail down your pants leg or onto your suede shoes.
In the beginning, your doctor will probably want you to keep written records of your liquid intake and output. Later on, you might find it helpful to void into some container with measurements; this will help you get to know your pouch and your output cycles, and approximately how much you put out per hour under normal circumstances. It will help you to get to know your new normal. In addition, you will feel when you have to go, but sometimes not when you are finished going. If, for example, you put out far less than you expect first thing in the morning, a time when you would ordinarily put out a lot, you may want to sweep the pouch by moving the catheter in and out an inch or so [your ET nurse will explain this], or bend over, apply some gentle pressure to your belly with your fingers, cough, reinsert the catheter, or just come back to it a bit later, after your morning tea or coffee.
Cathing into a urinal or other container will also give you a chance to examine your urine. If it is persistently cloudy or smelly, it may be a sign of a urinary tract infection and you will need to check in with your doctor.
As shown in the American Cancer Society booklet, there are several positions for cathing into the toilet, one can sit [aiming the catheter between the thighs] or stand. Standing makes using public toilets and going on camping trips a lot easier
There are many different ways to wash catheters, but the main idea is clean out the urine and any mucus with hot soapy water, and to dry and store it in such a way that bacterial growth is discouraged. One method is to run a stream of hot water down into the catheter, then put a squirt of liquid soap into the bell, and then bring the tip into the bell, into the concentrated soap solution, like a snake eating its tail; stir it around, then rub soap along the outside along the length of the catheter, then rinse the outside and then the inside from both ends, into the bell first, then back from the eyes. Inspect it to make sure there is no trapped mucus. Dry the outside with a clean paper towel and then, firmly holding the catheter near the eyes, at arm’s length, spin it fast like a helicopter rotor to remove the water from the inside. If you are away from home, after drying the outside with clean paper towel and spinning it, coil it in a clean dry paper towel, and place in your pocket pouch or other catheter kit holder. If you are at home, you can just let it air dry in the medicine cabinet or some other clean private area. Unless they are fully dry, storage in sealed plastic bags may facilitate bacteria growth.
Your ET nurse will be able to give you an idea of how long you can safely re-use catheters.
Choosing your catheter
If you have an internal pouch, you will probably be using the 16” long male catheter, rather than the 6” female catheter; this is long enough to reach from the surface of your abdomen into your body to the reservoir. You will see that you probably need about half the length of the catheter to reach from your skin into the reservoir. Catheters vary in size [diameter] and material. Your doctor will let you know what catheter size and style [straight or coude] you will use. The material may be up to you. There are three types: latex/red rubber, silicone and PVC. The last two are clear [which may make cleaning easier as you can see through it]. They also vary in firmness, the shape of the point, the number of eyes, and sensitivity to temperature. The PVC, catheters, for example, are stiffer when they are cold. Try different types and see what feels comfortable.
Once you choose your catheter, you will have to get a prescription from your doctor in order to order supplies for your daily use. It is also a good idea to also reduce it on a copy machine and laminate it to carry it in your wallet. In case you run out, you won’t be able to just go to any medical supply store and get extra catheters without the prescription.
Once you have the Indiana pouch or another type of internal reservoir, you can never be without at least one or two catheters on your person. You could get kidnapped by space aliens while going to the corner for the paper, and they are unlikely to have any spare catheters on board. In addition, if you dropped a catheter at home, you would probably feel comfortable washing it out well and using it. If you dropped one on the floor into a puddle in the bus terminal bathroom, you would definitely want to have a spare!
It is wise to order sufficient supplies so that you have enough to be able to keep some for daily use, and some extra. Most people who work outside the home or travel keep extra catheters in the places where they spend time: at the office, in the car, in the gym bag, etc. You do not want to find yourself away from home without at least one catheter handy. If you are flying, have your supplies in your carry-on luggage, with a few extra in your checked luggage.
You might want to keep hand lotion available. You will be doing a lot more hand washing once you start to self-cath.
If you have no access to a participating provider medical supply house, you will need to set up something with a local medical supply store or pharmacy, make sure they have the necessary catalogues, and order your catheters through them.
You will also become skilled at maintaining your clean technique in public restrooms: washing, not touching toilet stall door locks after you have washed, handling your supplies, dealing with automatic faucets, etc. Once you get it all down, you can catheterize in trains and planes, in beach bathrooms and on camping trips. Urinary tract infections are a common complication of having an internal reservoir. Planning ahead and the maintenance of clean technique are essential to minimize the risk of recurrent infections. As the ACS booklet noted, do not wash catheters in water which is not meant for drinking. If faced with this situation, rinse it out, and then keep it separate from your other catheters and wash it thoroughly later. Many public bathrooms do not have paper towels, so it might be wise to carry a few extra paper towels along with your catheters for those situations.
If you are scheduled to have any other surgery, medical procedure or a test such as a colonoscopy, be sure to tell the doctor or other staff that you have a continent diversion and that your bowel is shorter.
For men, depending on whether nerve sparing surgery is possible, there may be changes in the ability to have an erection. As the prostate is usually removed as well, there will also be changes in the ability to ejaculate. There are mechanical or medical methods to assist with achieving an erection, so these should be discussed before the RC.
For women, part of the surgery usually involves a total hysterectomy, the removal of the uterus and ovaries. This has two consequences. The top portion of the vagina is usually removed as this tissue is in close contact with the bladder. Resumption of sexual activity will involve the gradual stretching of the vagina to return it to its former length. The removal of the ovaries results in abrupt surgical menopause. This may accelerate changes which were already being experienced naturally or as a result of chemo, or may be new for the younger woman after the RC. These changes will usually include vaginal dryness. The patient may have to include the regular use of a lubricant with the resumption of sexual activity.
For younger patients for whom continued fertility is a concern, banking of sperm and eggs may be a consideration before the treatments begin.
As with any recovery and return to life after cancer treatment, people typically have concerns about their appearance and attractiveness to a sexual partner. They have concerns about changes in sexual functioning, and sensation. The American Cancer Society [800-ACS-2345] has excellent booklets about sexuality after cancer treatment, one for each gender, called “Sexuality and Cancer.” Partners need to talk to each other about their concerns. For example, the healthy partner may worry about harming or causing pain to the patient, or the patient may have similar concerns about being damaged by resuming sexual activity. Partners need to find ways to talk about these issues with each other and with the surgeon, and to ask questions. There may need to be changes in technique or position. It helps for the partners to be able to play, experiment, and sometimes have a sense of humor.
Vitamin B-12 deficiency is a long term risk of the continent reservoir; that vitamin is usually absorbed in the portion of the intestines used for the pouch. Discuss monitoring this with your doctor. Deficiencies usually become evident two to three years after the RC.
You will discover that you had more courage and strength than you ever imagined. You are a survivor, a warrior, a coach and mentor to those who follow … be all that you can be… and you can be the best.
Contributed by Karen Greene, Margaret Joskow, Marti Torn, Kathy Knight & Kathy Leslie
|Last Updated ( Sunday, 16 November 2008 )|