Surgery
Surgery is considered as a final treatment for IC after other conventional treatments have failed. The patient needs to be aware that with any type of surgery success cannot be guaranteed, although in many cases there is a distinct improvement in the quality of life. It is very important to speak with others who have undergone the different types of surgery and this can be arranged through the ‘Friends’ group of The Cystitis and Overactive Bladder Foundation.
The major types of surgical procedures for IC are described below. It is important to be aware that the functions of the urinary bladder are to store urine (fill) and to void urine (empty). Most operations on the bladder will improve its ability to store urine, usually by making it bigger and therefore capable of holding more urine, but very often its ability to empty is severely compromised. For this reason it is usually necessary for patients to be taught how to completely empty the bladder by way of a catheter - intermittent self catheterisation. The frequency with which the patient will need to self catheterise will depend on how well the bladder is able to empty itself after the operation; some patients can get away with once or twice-daily catheterisations while voiding reasonably well in between times, while others may have to rely completely on catheter emptying, particularly following an internal pouch procedure.
Unfortunately the bowel used in these operations continues to produce mucus and this may cause problems for some patients as it may block catheters and make self catheterisation a little difficult at times. Urinary infections are very common also and some patients may require long-term low dose antibiotics to prevent these. There is also a risk of minor long-term metabolic problems as well as a theoretical risk of cancerous change in the bowel (although this is extremely rare). For this reason some urologists often recommend that patients undergo a precautionary cystoscopy every year simply to keep an eye on the bladder.
Ileal conduit / Urinary diversion:
This is the simplest of operations to perform for IC. The bladder may be left in-situ or completely removed (cystectomy). Urine from the kidneys and ureters is channelled out onto the abdominal wall via a short segment of small bowel, which is then connected to the abdomen as a stoma. The stoma is bright red in colour, resembling the inside of your mouth, and protrudes about 2 cms. The urine produced is then drained continuously into a specially designed watertight plastic bag, which can be drained or changed as necessary.
Augmentation Cystoplasty:
This is also known as a `clam' enterocystoplasty. With this operation none of the bladder is removed at all. The bladder is simply split open from side to side (like a clam shell) and a length of opened bowel is used to fill the gap in the opened bladder, thus greatly enlarging its capacity. It is a useful procedure when the bladder capacity is very small and when pain is not a significant problem. Patients who have this procedure will usually need to self catheterise daily.
Substitution Cystoplasty:
In this operation the entire bladder (total cystectomy) or the greater part of it (supratrigonal cystectomy) is removed, leaving only the urethra and the two ureters behind. A new bladder is fashioned out of bowel (either large or small bowel or a combination of the two). This is called a `neobladder' . It is sutured to the urethra, and the two ureters are connected into it from above. This type of operation is reserved for patients with severe symptoms (pain and intractable frequency) and who have very small bladder capacities (less than 300 mls under anaesthetic). Again, these patients will have to self catheterise as the neobladder is not capable of any degree of emptying on its own.
Continent diversion:
This may also be called an Internal Pouch (Koch, Indiana or Florida pouch) or a Mitrofanoff Procedure. This is a major form of surgery in which the bladder is completely removed (cystectomy) and a new ‘bladder’ (neobladder) is created out of bowel (either small or large bowel or a combination of both). However, instead of connecting the neobladder to the urethra, a small opening is made in the abdomen (often at the umbilicus or belly-button), through which the patient passes a catheter into the pouch in order to empty it. As there is no external urine collection bag (as in the ileal conduit) and the stoma is so discreet, the aesthetic result is much better. However, this procedure is frequently prone to complications. Again, the neobladder produces a lot of mucus and it may be prone to painful inflammation (‘pouchitis’). Because it is relatively inaccessible (except through the tiny catheterisable stoma) it may be difficult for the urologist to deal with problematic collections of mucus (and even stones) in the pouch.
Friends
An article in the Urostomy Association Journal for Summer 1997 called `The Montreux Study-Quality of Life in Clinical Practice' was the report on the findings of how people with stomas were reacting to their way of life after surgery.
It was discovered that one group were not as happy as would have been expected, even though the disease that had caused so much pain and distress now gave them no problems. The study showed they had all suffered from Interstitial Cystitis. It was found that now they were considered to be well, they received less support and sympathy from friends and family. This was causing some difficulties in adjusting to a radically different way of life, when support and understanding of new emotional, and physical problems, was needed.
At times like this it is often helpful to speak to someone who has undergone the same experience, and can therefore understand just how you are feeling.
This is why the group we call Friends was started in November 1997. For anybody about to undergo major surgery this is a worrying time in their life, and we now have over 40 members who themselves have had surgery and are willing to talk to others about to undertake this step. They are there just as friends, to be someone to talk to, who fully appreciates the fears and anxieties about life before - and perhaps more importantly - after surgery. It is often the little questions that people feel unable, or forget to ask, when seeing their consultant. For example: "Now I've had a urostomy I can't have a bath can I?"; answer "Yes, for as long as you like; and use a hair drier to dry the bag so you don't have wet underwear." For any medical problems, the Friend will suggest that advice from a GP or consultant is sought.
There are three main types of surgery that Friends have had: urostomy, ileocystoplasty, and Mitroffonof, so we can find someone to talk to any member about to undergo one of these. To date we have had over 50 requests for help, several of whom have gone on to have surgery, and we hope that the Friends have helped to smooth the passage through this difficult time.
The scheme is run by Sue Mills who had a urostomy herself in 1997, and she holds details of our members who have undergone surgery themselves, and are willing to talk to others about their experiences.
If you are considering surgery and would like to speak to someone before making your decision, please join The COB Foundation and ask to be put in touch with Sue. She will be pleased to put you in touch with two or three of our members who live near you.