My dad had a radical cystectomy on June 6th - he now has no bladder or urethra usage, only a stoma. Operation went well, and he has been home for nearly 2 weeks now.
He is quite depressed at the mutilation he has suffered, but what depresses him more is the repeated failure of the urostomy bags - they keep leaking from the circular adhesive that forms a ring around the stoma. The longest any bag has lasted is about 3 days, and sometimes only 1 day; this is without any sort of strenuous activity (or even showering).
The leakages USUALLY occur at night, an unpleasant way to wake up, making me wonder if he is sleeping the "right" way, whatever that may be. He has tried slleping in a lounge chair, but often goes to sleeping straight on the floor, finding this more comfortable. Leaks occur both ways.
We have tried to reinforce the edges of the bags with 1st aid tape, this MIGHT have had some limited success at forestalling the inevitable leakge.
My questions of anyone with the knowledge and kindness to answer:
1.Is leakage a comon early problem, possibly owing to swelling or stoma size? His stoma is just under 25 mm, ovoid, right side of abdomen.
2. Any recommendations on bag brands - I think adhesion is key to happiness with these bags. He has used bags from Hollister that the hospital provided, and recently tries one from Assura (with a "light convex" stoma cover). Both have leaked, though we have tried the Assura only once so far ( it looked sturdier and more thoughtfully designed, though).
3. Is sleep position important in this? He doesn't roll onto the bag, of course, but I wonder if an optimum position exists (side with bag? On back?, etc).
4. Finally, removal of bags sometimes seems to disturb the healing of the stoma area, precipitating some bleeding - will this stop after some time goes by?
5. Also, we usually clean off the skin prior to fresh application by washing lightly with Ivory soap (leaves no film), followed by further cleaning with Isopropanol. Is this OK?
Many thanks to anyone with any ideas - and if you know some other point(s) that are helpful.
Hi Santa Cruz,
Sorry to hear about your dad's pouching problems, but not surprised. It will take some effort on your part, but there is a solution. Can you contact and ET nurse (also known as ET or Ostomy/Wound nurse) who has a LOT of experience with urinary diversions? He/she can check the location of your dad's stoma and help find an appliance that will work for his stoma. Stomas are as individual as snowflakes - each requires a different type of appliance.
The following is an excerpt from my article in UOAA's "Phoenix" magazine that just came out. Hope it helps.
There are three main types of urinary diversions: incontinent, internal continent reservoirs with an abdominal stoma, and internal continent reservoirs that are reconnected to the urethra to provide normal urination. The incontinent urinary diversion, also known as the Bricker’s loop, ileal loop, or ileal conduit, was developed in the 1950s and rapidly became the gold standard for urinary diversion. It is still the most frequently performed urinary diversion, primarily because it is a relatively uncomplicated procedure, and it is also the only urinary diversion procedure most urologists have been trained to perform. Although the majority work reasonably well, the ileal conduit is far from the perfect solution because of the high incidence of ureter and stoma strictures and urinary reflux to the kidneys. These strictures frequently impair, or even block, urine flow, and may require surgical revision. Additionally, the incidence of ascending bacteria and urinary reflux remains substantial and results in repeat kidney infections and progressive kidney deterioration in up to 30% of the cases.
The ileal conduit is made from a 6 to 10 inch long segment of ileum (small intestine) which is separated from the small intestine with its blood and nerve supply, the web-like mysentery, carefully preserved. One end of the conduit is closed with stitches or staples, and the other end is brought to the surface of the abdomen to form a stoma (opening). The ureters are implanted into the closed end of the conduit which serves as a pipeline for a steady flow of urine from the ureters through the abdominal stoma and into an external appliance (bag) that is attached to the abdomen. Ideally, urine should flow continuously through the stoma at approximately twelve to fifteen drops per minute. A healthy stoma is pink to red in color and also excretes mucus and moisture, both normal excretions of the ileum. Fortunately, the long stringy mucus threads flow easily with urine.
Each urostomate requires an appliance that works with his/her stoma, a process that usually takes a bit of trial and error. It is not uncommon for people with ileal conduits to have leakage around the appliance faceplate and/or a variety of peristomal skin (skin around the stoma) problems. Urostomates need to be aware that stoma size and shape may change especially with weight gain or loss or an increase in physical activity, leaking may occur, and a different type of faceplate and appliance may be required. Although this is particularly common during the first few months after surgery, it can happen at any time.
Fortunately, a variety of urinary appliances is available, ranging from a one-piece disposable with a soft, flexible faceplate to a two piece reusable appliance with a semi-rigid or rigid plastic faceplate. Many of the appliances are easier to use with stomas that protrude from the abdomen. If the stoma is flush with the abdomen or located in a body fold, it may be necessary to use an appliance with a semi-rigid convex faceplate and a belt to help make the stoma protrude in order to prevent leakage. Care must be taken to routinely check the appliance fit and make any necessary adjustments. The faceplate opening should fit within 1/8 to 1/16 of an inch around the stoma. If none of the available faceplates are satisfactory, “special order faceplates” are available. It is always wise to check with an ET Nurse (also known as an Ostomy/Wound nurse) for help with appliances.
Common peristomal skin problems include yeast and fungus infections, pimples, ulcerations, warty looking, gray, raised encrustations and/or white crystal deposits on the peristomal skin and/or stoma. These conditions require prompt and appropriate treatment by an ET Nurse. Since all ETs do not have equal urostomy experience, however, it may be necessary to seek out another ET if problems persist. Prescription medications may be required for severe skin conditions. Preparations that contain cortisone must be used sparingly because they have the potential to cause skin to become thin and fragile with prolonged use. Urostomates should check with an ET or physician for specific directions before using any skin products. The UOAA Phoenix magazine, UOAA newsletters and UOAA members are also good sources for tips on dealing with appliance and skin problems.
The two most common causes of skin irritation are chemical and mechanical that are caused primarily by leaky urine and rough treatment of the skin. Chemical irritation results from the exposure of peristomal skin to urine, adhesives, solvents, cleansers, and soap. Since allergic skin reactions are always a possibility, new products should always be tried out on a small area of skin outside of the faceplate. Peristomal skin and stomas that are awash in urine are prime targets for skin irritations, and crystal buildup around the stoma, especially during the postoperative period when the greatest change in stoma size and shape occurs.
Mechanical irritations are usually caused by improper appliance removal and/or close shaving, which may strip protective layers off of the peristomal skin. To minimize damage, the faceplate should be removed gently by carefully pushing the skin away from the adhesive, instead of pulling the adhesive away from the skin. Also, starting at the top of the faceplate and slowly working toward the bottom reduces tearing and pulling on the skin as well as the hair follicles, which grow in the same downward direction. Vigorous scrubbing or use of abrasive cleansers also damages the skin. Adhesive removers may be used sparingly and gently if necessary. Body hair on the peristomal skin occasionally needs to be carefully shaved or clipped with scissors to further reduce pulling of the hair and skin. An electric razor can be used, but disposable razors are not recommended because they may damage the top layer of skin.
Occasionally, it is necessary to air the peristomal skin. It helps to find a warm, private, comfortable place to sit and read or watch TV, and to place a waterproof pad or a towel underneath. The continually flowing urine can be absorbed with several wicks (made from a paper towel, rolled up like a cigarette and taped in the middle), a cotton-filled small mouth bottle that fits around the stoma or a clean folded washcloth carefully positioned under the stoma. A hair dryer set on cool, held at least one foot away from the stoma, will speed drying time. Any urine that gets onto the skin during the airing process should be gently washed off with a clean warm cloth.
Since it is imperative to insure a constant flow of urine away from the stoma, and to keep urine from backpuddling around the stoma, the appliance needs to be connected to a long thin tube that drains into a collection jug at night or when lying down for a few hours. The tube and jug need to be cleaned daily with a germicidal solution. The reusable appliances also need to be cleaned in a similar manner when changed, typically every three to six days. Many people find it is easier to change an appliance in the morning before drinking liquids, and it also helps to bend over a few times to help expel urine from the conduit. A wall mirror and a dissolvable paper guide strip (the ½” paper strip fits inside the faceplate opening) make it easier to center the appliance over the stoma. Of course, it is important to always have a backup appliance ready and available at all times.
Please feel free to email.
Thank you rolsen, he does have a nurse who comes by to check on his progress, and orders him samples of products to try out. He says she told him to just keep trying different pouches, since different adhesives behave differently on individuals.
I do take your point on allowing "airing time" for the stoma - I've wondered how skin could stand the constant exposure to urine.
Where is your dad? Does his ET want him to just try different appliances on his own, or is she helping him with suggestions? Is it possible to see another ET who might have a better grasp on what is needed for ileal conduit urinary diversions? Regrettably, all ETs do NOT have a lot of experience with urinary diversions.
I had an ileam bypass urostomy 2 years ago. Six months ago I started having frequent bag failures ...within hours a couple of times. I tried using paste with no success. I then contacted my supplier and they recommended the convex wafers. I have tried one and it worked. (I am now trying to use up my remaining flat wafers).
I could never determine why the sudden failures started especially since I was doing nothing different when they started. I am physically very active. My urologist suggested the weight of my leg bag tube but he could suggest nothing else.
Home care nurses usually have very little experience with urology devices and the one I had during the recovery from my operation knew essentially nothing. I would not go there for help.
I don't believe the way I sleep was a factor. Since my bag is on my right side, I try to sleep on my left side to lift the bag as much as possible to improve the flow to my overnight bag which is attached to the rail low down at the foot of my bed. The head of my bed is also raised about 4 inches for another problem.
I have also tried, fairly unsuccessfully, to empty my bag every 1 1/2 hours. I believe a very full bag may increase the pressure on urine trying to escape through the opening around the stoma. I usually manage to remember in two hours or so.
You mentioned swimming. I haven't done it but showering with my bag on has never seemed to affect the seal.
My biggest treat these days is showering with the bag/wafer removed.
I hope some others on this site have more insight into this problem. One doesn't care to have another accident in the packed stands of the Titans football stadium.