a new bladder for Donald
by Jenny Bryan
One look at the inside of Donald's bladder and it's easy to see why he has been in so much pain for the last seven years. An angry red patch about the size of a 50p piece glistens under the theatre lights, as consultant surgeon Christine Evans turns Donald's bladder inside out and puts it over her fingers like a mitten.
© C4
She and her team are in the early stages of a four-hour operation to remove the bladder and replace it with a 40cm piece of Donald's bowel, reshaped from a tube into a pouch. This will take over the job of holding his urine and, hopefully, get rid of his pain. Donald has a severe form of interstitial cystitis (IC) – a condition that few people have heard of unless they are among the thousands of people in the UK who have it.
'Interstitial cystitis is a painful bladder syndrome varying from very mild to very severe when you really can't think of anything else,' explains Miss Evans, from Glan Clwyd Hospital, in North Wales. 'Some of the treatments are quite effective and many patients stay reasonably well for some years. It can come and go on its own but in some people it's relentless.'
At 37, Donald had reached the end of the road with non-surgical treatments. Before his operation, he'd tried everything, including changing his diet, but nothing was working.
'It's a gripping pain that twists. You can't move, it stops you dead. It stops every limb from moving and it's excruciating,' he said before his operation.
Depressed, often needing to pee every 10 minutes, and no longer able to lead a normal life, Donald had no hesitation in opting for a new bladder. Miss Evans spelt out the possible risks, which include infection, not being able to pee normally, having erection problems, and the new bladder becoming cancerous. But none of these small risks could compare with the daily grind of Donald's IC.
an inflamed bladder
No one knows why the lining of the bladder becomes inflamed in IC but, with urine continually washing over the red and ulcerated tissue, it isn't hard to understand why it hurts. It affects people of all ages, especially women, and only frequent pee-ing to get rid of the urine which is irritating the bladder brings temporary relief from the pain.
IC is different from the common form of cystitis which is often caused by a bacterial infection and can be treated with antibiotics. Treating IC focuses mainly on trying to reduce the inflammation and relieve the pain.
bladder stretching
Stretching the bladder is both a test and the first treatment for IC. Under a general anaesthetic, surgeons fill the bladder with fluid and keep it stretched for 5-10 minutes. During this time, they put a small telescope into the bladder to look for redness, swelling and small bleeds – the typical signs of IC.
Stretching the bladder in this way also has the effect of breaking up some of the damaged tissue in the lining and about one in three people find that, after their bladder has settled down, their symptoms are improved. The effect can last for several months and stretching can be repeated if it is found to help.
relining the bladder
As many people with IC have lost the protective coating in their bladder lining which prevents urine from causing irritation, surgeons may try to replace it. Cystistat is a fluid which contains sodium hyaluronate – a substance that is an essential component of the protective coating in the bladder. Surgeons inject the fluid directly into the bladder once a week for the first month, then once a month until the symptoms improve. If the treatment helps, it may only be needed once every 6-12 weeks, but not everyone responds.
Elmiron is a tablet which may also help to replace chemicals in the protective coating in the bladder, but it has not yet been licensed in the UK. Doctors can make a special request to the manufacturers for treatment for specific patients. Elmiron has to be taken three times a day and it may be several weeks before there is any effect.
other drug treatments
Other medicines that some people find helpful include:
- cimetidine – an ulcer-healing drug that is widely used to treat stomach ulcers
- arginine – a substance which may indirectly improve the blood supply to the bladder and help it to relax
- dimethylsulfoxide (DMSO) – a fluid that is put into the bladder and may reduce pain and inflammation.
a change of diet
There is no dietary cure for IC, but some foods – such as mature cheeses, yoghurt, chocolate, canned and processed meats and fish, most nuts, vinegar, pickles and mayonnaise, as well as most fruit juices – do seem to irritate the bladder lining. Bread, rice and pasta, meat and most fish, and some vegetables, including broccoli, cauliflower, carrots and sprouts, seem not to make symptoms worse.
surgery as a last resort
Surgeons only recommend an operation to bypass or remove part or all of the bladder when they've tried everything else and symptoms are very severe. Operations are performed at specialist centres. Donald's surgery went well and, three months later, all he had to show for it was a 20cm scar running down beneath his belly button. Pain free for the first time in seven years and able to pee by pressing down on his new bladder, he could at last think about returning to work and getting on with his life.
Some are less fortunate and cannot pee normally after surgery. Instead, they need to put a small tube (catheter) into their bladder to pass urine. And, as Miss Evans explains, a lot of people who have reconstructive surgery like Donald's do need further operations. Surgery is certainly not for the faint-hearted. But, for those with the most serious IC, it may be the only chance of a near-normal life.
help and info
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organisations
The Cystitis and Overactive Bladder Foundation (COB Foundation)
(Previously the Interstitial Cystitis Support Group)
76 High Street
Stony Stratford MK11 1AH
Tel: 0908 569169
E-mail: info@cobfoundation.org
Website: www.cobfoundation.org
Provides information and support to sufferers of bladder problems, including Interstitial Cystitis, Bacterial Cystitis and Overactive Bladder. It brings IC sufferers together, through local meeting groups, to share information and experiences via newsletters and resources.
Bladder Pain Syndrome Association
54 Sutherland Road
Belvedere DA17 6JR
Tel: 020 8310 8729
E-mail: info@b-p-s-a.org.uk
Website : www.b-p-s-a.org.uk
A support group run by bladder pain sufferers for bladder pain sufferers. Membership is open to patients with any of the Painful Bladder Syndromes. Informative website features a chat room facility which is available for anyone with bladder pain or related syndromes, their families & friends.
NASPCS (National Advisory Service to Parents of Children with a Stoma)
51 Anderson Drive
Valley View Park
Darvel KA17 0DE
Tel: 01560 322024 (Mon-Fri, 9am-5pm, answerphone available)
E-mail: john@stoma.freeserve.co.uk
Website: www.naspcs.co.uk
A national charity that provides information and advice to parents of children who have had stoma, ileostomy, colostomy or urostomy.
websites
Bladder Repair
www.gynaesurgeon.co.uk/operations/bladder.htm
Provides information on gynaecological problems to patients, students and doctors. This particular page explains bladder operations.
Intercyst.org
www.intercyst.org
A personal site, which aims to provide support those who suffer from interstitial cystitis. Features a reading list, chat room and mailing list.
Interstitial Cystitis Association
www.ichelp.org/TreatmentAndSelfHelp/welcome.html
Factsheets and guidelines concerning treatment options available, from the American-based Interstitial Cystitis Association.
Urology Channel – Interstitial Cystitis
www.urologychannel.com/interstitialcystitis/index.shtml
Extensive information about interstitial cystitis, including causes, risk factors, diagnosis and treatment.
Interstitial Cystitis Network
www.ic-network.com
Includes the ICN Patient Handbook, which is made up of a large archive of patient education materials on a variety of topics, from diagnostic techniques to treatments and self care. Extensive source of information.
reading
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Conquering Bladder and Prostate Problems by Jerry Blaivas (Perseus Books, 2001) |
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The Interstitial Cystitis Survival Guide: Your guide to the latest treatment options and coping strategies by Robert Moldwin (New Harbinger Publications, 2000) |
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The Patients Encyclopaedia of Cystitis, Sexual Cystitis and Interstitial Cystitis by Angela Kilmartin (Angela Kilmartin, 2002) |
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(June 2003, resources updated January 2005)
