Surgery is rarely used to treat IC/BPS

As the final step in the AUA Guidelines, major surgery is reserved for the very small percentage of patients with severe, unresponsive disease, who “are motivated to undergo the risks and lifelong changes associated with irreversible major surgery.” It is also an option for patients with a severely limited bladder capacity under anesthesia.

Pain relief is not guaranteed, and pain can persist even if the bladder is removed. Thus, surgical options must be carefully and thoughtfully reviewed by both the patient and the physician, including the surgical options, potential risks vs. benefits and experience of the surgeon. It’s always important to work with an experienced urologist who has done multiple surgeries. You have the right to request a second opinion with, perhaps, a more experienced surgeon if you

Bladder surgery is a MAJOR procedure with a risk of complication and failure. It may require prolonged hospitalization and months of recovery. Family members will be required to provide support and assistance for substantial period of time afterwards. The patient will need assistance for many normal daily functions as well as driving to follow up visits with medical professionals. Because the risk of complication is substantial, careful monitoring of the surgical site is required. In-home nursing care may be required as the patient learns to manage any new stomas, bags or catheterization.

While some patients found relief with surgery, others report a difficult recovery period. Patients have raised one consistent point, the availability of affordable medical supplies under their health insurance. For example, some urinary diversion patients have reported that they are only supplied one “bag” a day though they need a minimum of three or four to handle daily urine flow.  We strongly suggest that you talk, in advance, with your health insurance to learn what they will and will not supply.

Substitution cystoplasty

In substitution and augmentation cystoplasty, a section of the bladder is removed and replaced with a section of the patient’s bowel. The bladder continues to store urine and urination occurs through the untouched urethra. There are many potential problems with this procedure. Removing the trigone area of the bladder increases the risk of urinary retention, requiring intermittent catheterization. (1) Keeping the trigone may be a source for persistent pain and recurrent ulcers.(2)(3)

The patients most likely to fail are those:

    • who describe the urethra as the main site of pain (4)
    • those without Hunner’s lesions(5)
    • and those with a larger bladder capacity under anesthesia.(6)

Urinary diversion with or without cystectomy

Urinary diversion surgery involves using a section of bowel to divert urine from the ureters to either a stoma in the abdominal wall (where a bag is placed externally to collect urine) OR to a pouch created within the abdomen. Because urine no longer passes through the bladder, this surgery has the potential of relieving frequency, nocturia and sometimes pain in a carefully selected patients. However, complications can occur in the section of bowel used. Bowel tissue is not normally meant to hold urine and thus reacts, often creating large amounts of mucus and/or by becoming irritated.

The bladder can be kept intact in the abdomen or removed, aka cystectomy. Many patients assume that because the bladder is removed, their discomfort and pain will resolve. Sadly, this is not the case. In some patients, pain persists because pain may be originating from the muscles or perhaps even the nerves in the area. Pain relief is not assured.(5) One study of 14 patients who underwent cystourethrectomy and urinary diversion revealed 10 patients with persistent pelvic pain including four with concurrent pouch pain postoperatively.(7)

Patients with a better chance of success usually have:

      • small bladder capacity under anesthesia (1)
      • an absence of neuropathic pain(8)

Meet Other Patients FIRST

We strongly encourage you to talk with patients who have had a similar surgery so that you can learn, first hand, some of the challenges that patients have faced. You can find several message boards dedicated to bladder surgery and cystectomy in the ICN Support Forum!

References

    1. Linn JF, et al.  Treatment of interstitial cystitis: comparison of subtrigonal and supratrigonal cystectomy combined with orthotopic bladder substitution. J Urol 1998; 159: 774.
    2. Chakravarti A, et al. Caecocystoplasty for intractable interstitial cystitis: long-term results. Eur Urol 2004; 46: 114.
    3. Christmas TJ, et al.Detrusor myopathy: an accurate predictor of bladder hypocompliance and contracture in interstitial cystitis. Br J Urol 1996; 78: 862.
    4. van Ophoven A, et al.: Long-term results of trigonepreserving orthotopic substitution enterocystoplasty for interstitial cystitis. J Urol 2002; 167: 603.
    5. Rossberger J, et al. Long-term results of reconstructive surgery in patients with bladder pain syndrome/interstitial cystitis: subtyping is imperative. Urology 2007; 70: 638.
    6. Webster GD and Maggio MI. The management of chronic interstitial cystitis by substitution cystoplasty. J Urol 1989; 141: 287.
    7. Webster G, et al. Impact of urinary diversion procedures in the treatment of interstitial cystitis and chronic bladder pain. Neurourol Urodyn 1992; 11: 417.
    8. Lotenfoe RR, et al. Absence of neuropathic pelvic pain and favorable psychological profile in the surgical selection of patients with disabling interstitial cystitis. J Urol 1995; 154: 2039.