My Journey toward a second ostomy aka, a double bagger

I received the following message on Facebook from Joy Hooper another person passionate about the ostomy community…

Joy Hooper

Hi Randy, are you documenting your journey towards getting another ostomy? You could show a powerful message with a few photographs. I am passionate about all things ostomy and have just begun working for the Wound Care Education Institute and an instructor for their Ostomy Management Specialist program. I would love yo show your journey because you are right, you would think that accepting a second ostomy would be easy(ier.) Thank you for differing. Have a Happy Thanksgiving.

Yes, Joy, I will begin….

Background

I was diagnosed with Stage 3 rectal cancer at age 30 in 1986. Had surgery to remove the tumor along with my rectum, anus and sigmoid colon, requiring a permanent colostomy. 6 weeks of radiation treatments followed. Cancer-free for 27 years. Yahoo! Was taught how to irrigate by a great ET Nurse and have enjoyed an active life with a colostomy. Last Thanksgiving 2012, I wound up in the hospital for a urinary track infection that had gone septic. Almost died. Connected with a local urologist who did a roto-rooter job on my urethra. Several months later I could not urinate on my own, so began to self-cath. Wound up in the hospital again for a kidney infection and extreme scrotal swelling. Urine had been leaking from my damaged urethra into the scrotum. Had my penile implant removed followed by an abcess that put me back in the hospital again. My local urologist said my condition was beyond his abilities and experience and referred me to a surgeon at UCSF Medical Center who specializes in urethra reconstruction.

(Should have gotten a clue that my bladder and urethra was too far gone to save it!)

But, grasping at straws, we moved ahead to have urethra reconstruction which required a supre-pubic catheter a month before surgery. See Photo. What I liked about that was the shut off valve it has, so when I felt the urge to go, I would just flip the valve and empty. Other than the tube coming out just above my pubic area, I was the least offensive of all the situations I had been in since being hospitalized in November 2012.diverson

We consulted the surgeon at UCSF Med Center and based on prelim test results he felt I had an 85% chance of a positive outcome (urinating freely on my own with complete bladder void) from a surgery called Urethroplasty.

Urethroplasty (what I had hoped to get, but didn’t.) The open reconstruction of urethral stricture disease, also called urethroplasty, may involve surgery to remove the involved segment and re-attach the two normal ends.

But, due to poor tissue condition, I had a Perineal Urethrostomy

When patients have extensive recurrent strictures of the distal urethra and desire a simple procedure to relieve the obstruction, a perineal urethrostomy is an option.

Perineal urethrostomy for treatment of a stricture of the urethra.

A perineal urethrostomy is an opening under the scrotum connecting the skin to the urethra. During urination, the urine exits from the urethrostomy and therefore does not have to travel through the narrow distal stricture. This is particularly appealing to older patients with multiple medical problems who desire relatively simple definitive treatment.

Went home the same day as the surgery with a cath which was removed a week later, but I still could not urinate on my own. Finally, after a trip to the ER, I was able to force enough urine to provide some relief from the pressure. After a month, had a follow up appointment with the surgeon who was very disappointed that the surgery had not been successful. Me too! Suggested we give it another 2 months for complete healing, but if conditions did not improve he suggested we bypass all the radiation-damaged tissue and go with a urostomy.

Since I have had a colostomy for 27 years, one would think that another ostomy would be no big deal…then why have I tried all of there many things to try to resolve the issue without having another ostomy? Looking back at it now, I almost died twice from sepsis, have undergone 4 surgeries and am still having chronic UTIs. So why have I not considered a urostomy until now? Why have I been grasping at straws for a year instead of bypassing all that damaged tissue and resolving the issue, once and for all? I am working that issue and will keep posting as the journey continues….

December 8, 2013

I am doing my kagel exercises and taking a new med to help relax my bladder so that I don’t leak all time. I am going to the bathroom hourly, whether I feel the urge or not. But still going through 5-6 depends daily. When I think of living with chronic incontinence, I’m note sure I even want to wait until the end of January to see Dr. Breyer. I keep bouncing from “This has to stop, I’ve got to get a urostomy” to “I can live with this constant wetting myself.” Pretty crazy, huh?

December 19, 2013

Well, there is no question about whether I’m going to move ahead with the urostomy surgery. It’s not IF, but WHEN. Waiting on a date…but I do have some questions for Dr. Breyer…

1. How long is the usual stay in the hospital….4-7 days

2. How long before I’m up and around (working)…6 weeks of no heavy lifting

3. Any concerns about complications from previous colostomy surgery and gall bladder removal? No concern about gallbladder surgery, but previous colostomy scaring increases the chances for damage to the bowel during this surgery. Surgery time would be increased in bowel repair is needed.

4. WOCN pre-surgery consult for stoma marking, please? Yes, the day of or before

5. Can I get a cath now to improve quality of life until surgery in January. This really sucks!  No, cath increases the changes of infection. Prefer not to.

Calling Blue Cross to ask if they will pay for Depends. I’ve going through a bag of 24 every couple of days at $20/bag. Ouch!

FACEBOOK comments…

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December 21, 2013
Dr. Breyer faxed the order for a catheter to my local Urologist, but I’ve called for the past two pays to schedule an appointment with no call backs. Trish is pretty upset, as Dr. Freeman told her we would “never fall in crack” when we first went to him and told him about Dr. Nixon’s office not getting back to us. Seems like there is such a demand for urologists up here in Tahoe/Carson/Reno,  you can afford to blow off patients. Sigh.
At this point, I’ll probably just suffer through with being totally incontinent for the next 20 days. I should buy stock in the company that makes Depends. I’m going through 10 a day. Anyone have any suggestions on a more effective way to manage incontinence?

What is a urostomy?
A urostomy is an opening in the belly (abdominal wall) that is made during surgery. It re-directs urine away from a bladder that is diseased or not working as it should. The bladder is either bypassed or removed. (Surgery to remove the bladder is called a cystectomy.) The urine is passed out of the body through an opening called a stoma. An enterostomal therapy (ET) nurse or the surgeon will figure out the best location for your stoma. (An ET nurse is a specially trained registered nurse who takes care of and teaches ostomy patients. This nurse may also be called a Wound, Ostomy and Continence nurse (WOC) or an ostomy nurse.)

The stoma will look pink to red and will be moist and shiny. The shape will be round to oval, and it will shrink over time after surgery. Some stomas may stick out a little, while others are flush with the skin.

You will not be able to start and stop urine coming out through the stoma, so a pouch will be fitted to collect the urine as it comes out. There are no nerve endings in the stoma, so it is not a source of pain or discomfort.

Getting ready for surgery
As you get ready for abdominal surgery, your doctor or your ostomy nurse will explain the process and look at your abdomen to find the best location for the stoma. You may be asked to wear a sample pouch to make sure that the place chosen is on the flattest possible surface and that you are comfortable in all positions. If you have any hobbies or habits that might be affected by the placement of the pouch, talk to the doctor or the ostomy nurse.

A special source of help is an ostomy visitor. The visitor is a person who has a urostomy and has adapted well to the changes that it brings. He or she can answer many of your questions about day-to-day life. You may also find it helpful to take part in an ostomy support group. A support group allows you to share your feelings and ask questions as you recover and adjust to your urostomy. You can also share your story with others who may be helped by your experience.

Why have a urostomy?
Urostomy surgery is done for some diseases and conditions that cause serious bladder problems. The bladder is part of the urinary tract – the system that removes liquid waste products from the body. The urinary tract is made up of 2 kidneys, 2 ureters, the bladder, and the urethra. Urine is made in the kidneys. It flows through the ureters to the bladder for storage. It passes out of the body through the urethra. You can live without a bladder, but you must have a certain amount of kidney function to grow and be healthy.

If there is cancer (a malignancy) in the bladder, all or part of the bladder may be removed and the urine detoured through a urostomy. This may cure the cancer.

Some people find a urostomy easier to manage than a defective bladder that may have been caused by something like a birth defect, surgery, or spinal injury. Bladder problems often mean that people cannot control the flow of urine – they are incontinent. This can be embarrassing and the constant wetting may cause skin problems. Some young people have even asked for urostomy surgery as a way to end this problem.

Some children are born with a defect in the urinary tract that causes urine to back up into the kidneys. This leads to chronic or repeat infections. For these children, a urostomy may be life-saving. Surgery can make a pathway through which the urine may travel easily, without any blockages (or obstructions) that cause it to back up. This allows the kidneys to work their best.
Last Medical Review: 03/17/2011
Last Revised: 03/17/2011

How a urostomy is created

 urostomy urostomy1
Urostomy with stent

Urostomy – with stents for drainage just after operation

During the most commonly performed urostomy surgery, called an ileal conduit, the surgeon takes a six to eight inch piece of the small bowel (the ileum) and makes it into a conduit (or pipeline) for urine. The remainder of the small bowel is reconnected so your bowel will function as it did before surgery.

One end of the ileum is sewn closed and the other end is brought through an opening on the abdomen (belly). The part of the ileum you see on your abdomen is called the stoma. The stoma will probably stick out from the abdomen about 1 inch. This is where urine will now drain from your body. Read more about what a stoma looks and feels like.

Healthy urostomy

Healthy urostomy – some time after operation

 

December 29, 2013

Dr. Freeman put in a cath on Friday. It is so much better than wetting myself constantly. Dr. Freeman suggested another option to the urostomy surgery; contenance diversion:

 

Urinary diversion is indicated when the bladder can no longer safely function as a reservoir for urine storage. This article covers the most common types of diversion, the most common indications for diversion, and the most common early and late complications following urinary diversion. See the image below.

Close-up photograph of continent urinary diversionClose-up photograph of continent urinary diversion using ileum.

Noncontinent urinary diversion

Diversion into a noncontinent conduit is considered less technically demanding and is associated with the fewest postoperative complications; therefore, this technique is the criterion standard. Noncontinent urinary diversion is performed by either directly anastomosing the ureters to the anterior body wall (ie, cutaneous ureterostomy) or using a segment of bowel to anastomose in a similar manner to the anterior wall for ostomy bag drainage.

The bowels most commonly used for noncontinent conduit diversion are 15-25 cm of ileum (see the image below), colon, and, least often, jejunum bowel segments. These segments usually lend themselves to easy mobilization on a vascular pedicle, which allows for ureter anastomosis at the proximal end and stoma formation on the abdominal wall (most often in the right lower quadrant) at the distal end. In order to promote drainage and to minimize urine reflux, ensuring that the urine flows in a properistaltic manner relative to bowel segment motility is important.

Noncontinent urinary diversion with ileum. CourtesNoncontinent urinary diversion with ileum. Courtesy of Karl Kreder, MD.

Direct ureter anastomosis with the skin is the only form of diversion that does not require use of the gastrointestinal tract. In pediatric patients, cutaneous ureterostomy is often performed as a temporizing measure prior to a future and more definitive procedure. In adults, cutaneous ureterostomy is currently rarely performed.

Continent urinary diversion

The most commonly used bowel segments for continent urinary diversion are either ileum (as depicted below) or a combination of terminal ileum and ascending colon. Ensuring that all continent diversions store and empty urine at low pressures is paramount. High storage and voiding pressures ultimately cause high-pressure reflux nephropathy and may result in renal failure; therefore, all bowel segments used for continent diversion, with the exception of their use in a ureterosigmoidostomy procedure, are initially detubularized. The bowel segments are then refashioned in a more spherical shape, which increases capacity and decreases luminal pressure by a magnitude of 3- to 4-times lower than the original segmental pressure.

Continent urinary diversion using ileum. Continent urinary diversion using ileum.

Orthotopic diversion (ortho meaning correct, topic meaning of a place) is a term that describes the reconstructed pouch anastomosed to the native urethra. Neobladder is a term used synonymously with orthotopic diversion. The continence mechanism in an orthotopic diversion is the native urethral rhabdosphincter. Continent diversion may be further categorized into 3 types: (1) orthotopic or neobladder diversion, (2) continent catheterizable diversion, and (3) ureterosigmoidostomy.

Patients with a continent catheterizable stoma have a one-way valve mechanism fashioned at the insertion site that leads into the urinary storage system. The limb allows for catheterization through a small stoma on the abdominal wall, enabling the system to empty; however, this limb remains continent during the storage phase between catheterizations. Mechanisms for continence of the efferent limb include a flap valve, nipple valve, pressure equilibration, or combinations of thereof. Ureterosigmoidostomy consists of anastomosing the ureters to the sigmoid colon in a nonrefluxing manner. This diversion method relies on the anal sphincter for continence. For reasons listed in Complications, ureterosigmoidostomy is becoming a less popular method of continent diversion. See the image shown below.

Ileocecal urinary diversion using a plicated efferIleocecal urinary diversion using a plicated efferent limb and catheterization; ureters are anastomosed into the bowel wall. Courtesy of Karl Kreder, MD.

3 thoughts on “My Journey toward a second ostomy aka, a double bagger

  1. Randy, you are in my prayers! Good luck to you. You are truly an inspiration to so many. I first met you on Inspire and you sent me some samples of skin TAC wipes, which I use all the time now. May God bless you and keep you in His care. Keep moving forward. Keep me posted.

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