Q: I’m a C6-7 quad. I’ve been using an indwelling foley catheter for 4 years (since my injury). A little over a month ago I had a bladder augmentation with a stoma for self-cathing. I started using the stoma about a week ago and I’m disappointed and depressed. The biggest problem is volume. My bladder only holds about 150cc (only 50cc more than before surgery) before it leaks. I have to cath every 2 hours and I keep a pad on the stoma, which often is wet. Is this normal? Does it start small and have to stretch? My doctor keeps saying it will, but I’m not convinced after talking to people who’ve had it done and have 600cc bladders. I’ve cut back my fluid intake to about 1/3 of what I drank before.

Another problem is when I’m up in my chair, my feet swell. Then when I sleep I produce between 1000cc and 2000cc of urine, which makes cathing at night impossible. The doctor ordered ostomy bags for night (I’ve been inserting a catheter into the stoma and taping it in place) but they don’t hold enough, and I seem to leak at the stoma. I’ve been soaked a few nights. Any suggestions?

Also I have a little blood in my urine, but the doctor says it’s normal. Last night I bled through my penis, not a lot, but enough to scare me. Does this happen often? A doctor at the office said it was from having a Foley for so long and not to worry. I wasn’t very comforted. I’m afraid to leave my house because of leakage issues and am very disappointed. Any advice would be great.

— Nathan

A: Nathan, you’re right on track by staying in contact with your doctor until your issues are resolved and you get the answers you need. I ran your questions by several PM&R doctors and a few wheelers who’ve had this procedure. They all agree that it takes months, not weeks to recover from a bladder augmentation and get your bladder up to full capacity. The people I spoke with said once the recovery and healing process were complete, they were happy they had the bladder augmentation, but it is a big surgery and a long recovery.

In terms of swelling of the legs and more urine output at night — gravity is the enemy. Wearing compression stockings on your legs may help. Also taking time out during the day to lie flat and elevate your legs helps. This is common with SCIs — it happens to astronauts as well. If you still have problems, ask your physician about a drug called desmopressin. You take it at night and it helps reduce the amount of urine outflow.

Your question brings up an important point for all of us — before making a decision to have any surgical procedure, it is important to ask about the entire process, including risks, how the procedure is done, recovery process, and expected outcome.

Bladder augmentation (also known as augmentation cystoplasty) is reconstructive surgery to increase the reservoir capacity of the bladder. It has become so commonplace that in some instances, the risks, complexity and lengthy recovery process may be taken for granted. Here is an overview — the information about the recovery period may provide you with some answers and peace of mind.

Usually a urologist will run a series of tests to see if you are a good candidate for the surgery. These include a physical exam, tests to make sure the kidneys and ureters are in good shape and free from obstruction, tests to assess bladder contour and ureteral reflux (back up of urine to the kidneys) and tests to measure pressure and volume the bladder can hold before it leaks.

Admission to the hospital is 2-3 days prior to the surgery for pre-op prep. During the pre-op stay, because part of the bowel will be used as part of the augmented bladder, a liquid diet and strong laxatives clean out the system. Antibiotics may also be given.

During the surgery an incision is made in the abdomen to expose the intestines and bladder. The bladder is cut open. A section of either the ileum (small intestine), or appendix and cecum (large intestine) is removed, opened up and sterilized. This section is then sewn into the bladder. If needed, a stoma is created by taking a section of ileum and attaching one end to the upper part of the bladder and the other end to the abdomen, usually near the navel. Often the bladder neck is tightened as well. At this point everything is sewn back together and closed up. Sidenote: ideally, the urethra should remain intact as a back-up system in case the stoma fails. Over time stomas can fail and need to be re-done. The combination of a closed off bladder neck and stoma failure is a life and death situation and requires immediate emergency surgery to drain the bladder.

According to Dr. Mark Fredrickson, PM&R Doctor and Professor at University of Texas San Antonio University Hospital, “Bladder augmentation is a big, big deal. You are cutting apart major organ systems and marrying them together. I view a bladder augmentation as something you try after everything else has not worked. It is a big surgery, and there are lots of potential complications. The surgery takes at least four to six hours with experienced, skillful urologists.”

Recovery can take up to three months. At UOT, the urologist creates a “suprapubic” (hole from bladder to abdomen just above the pubic bone) during the surgery and places a Foley catheter in the SP as a redundant system to make sure there is no pressure on bladder stitches during the healing process. A Foley is placed in the stoma. After everything has healed, the SP is removed — usually a month after surgery — and the hole heals over.
Some urologists start to clamp off the Foley for a few hours after two to three weeks to let the bladder fill up and stretch out. The UOT post-op protocol typically is one month with the SP and the stoma Foley to make sure sutures don’t rupture and everything heals and gets good and solid. After a month of recovery, the urologist will put some contrast dye in the bladder and take some films to make sure there is no leaking. At that point if everything looks good, cathing on a frequent schedule starts until the urologist has a sense of bladder capacity. When healed, a bladder augmentation should hold at least 500cc.

Recovery is even a bigger deal than the surgery. Josh Sharp, T9 para for 14 years, had a bladder augmentation and stoma eight years ago: “I had a Foley catheter in my stoma for four weeks before I was able to start letting my bladder fill and using intermittent catheters in my stoma. I remember blood and mucus came out of the catheter for about a month. I irrigated my bladder with 100cc of saline through a catheter for about a month to try to break up and get rid of the mucus. And it took time before my bladder held a decent amount without wetting my pants.”

Fredrickson describes another common recovery difficulty. “Most folks with SCI have a slower moving gut. When you do anything surgically to the gut, a very common complication is it just shuts down, and it may not wake up for two to three weeks. A majority of our patients are not able to take any food or fluids for two to three weeks. They get all of their fluids and nutrients via IV until the bowels return to normal. I tell my patients that during recovery they will feel crappy for a week or two, so they know what they are signing on for.”

So why go through this difficult procedure? “When bladder augmentations work, they work well, especially when somebody has struggled with other bladder management techniques without success,” says Fredrickson. “For women and quads, adding an abdominal stoma makes catheterizing much easier. I have C6 quads who are able to independently cath through a stoma — for them that is liberating.”

Sharp adds: “I try and cath and keep my volume below 500cc. But my capacity is closer to 1200cc — and it’s great to have the extra volume.”

Fredrickson lists additional bonuses from bladder augmentation: Assuming your valves are intact, your kidneys will be spared damage from reflux. After an augmentation, most of the bladder is made up of colon, so it can’t contract. This gives you a low pressure system, which should enable you to ditch your anticholinergic medications and lose their side effects — like fuzzy thinking, dry mouth, difficulty with thermoregulation, and constipation. For men, discontinuing anticholinergics may provide an additional windfall — better erections!