Living with a parastomal hernia

Caroline Cowin and Caroline Redmond Stoma Complications Urostomy patients regularly experience The latest research suggests that half of all stoma patients could problems with their stoma. Of those who took part in our survey, over half report a develop a complication called a parastomal hernia, which is a bulge mucus discharge, a third experienced around the stoma. There are over 100,000 people in the UK living with urine infections, and a fifth said they had a a stoma. Of those, around 10% have had a urostomy, which means problem with odour. Less tangible effects, there could be as many as 5000 urostomists with the condition. which are harder to observe, were also reported. Just over a third said their Signs and symptoms Diagnosis stoma was uncomfortable. Over half got Parastomal hernias are caused because The first thing we established was that a dragging or pulling sensation, and about stoma surgery disturbs the muscle over half of the hernia cases in urostomists half said they felt a heaviness around their structure, making a potential weak point. developed within a year of the original stoma. These can all be attributed to Over time, the muscles stretch and stoma surgery. Another 25% of patients having a hernia. become weaker. As a result, straining developed a hernia between one and five The most obvious sign of a parastomal caused by violent coughing, heavy lifting, years after the original surgery. hernia is a bulging round the stoma. Patients vigorous exercise, or poor muscle tone Interestingly enough, research reported that the size of their stoma allows the abdominal contents, usually published last year found that, although changes as the hernia develops. Over half of the intestine, through the weak spot. half of the group had hernias, only a urostomists said their stoma had grown by To get a clearer understanding of the quarter of them knew they had one. Our as much as 9mm – the width of a pencil. problems patients face during diagnosis study found that the vast majority of When we asked whether having a and treatment of this condition, Salts hernias are diagnosed by either a hospital hernia made it more difficult to put on a Healthcare conducted a study to find out consultant or stoma care nurse. GPs only pouch, nearly half of the urostomists more about how people living with a diagnose around 10% of cases. That could agreed. Strangely enough, only 21% said parastomal hernia cope. The findings mean that around half the people who that having a hernia had made a difference were presented by Caroline Cowin of don’t have a regular review with a stoma to how they managed their stoma. This Salts Healthcare at the UA AGM last year. care specialist may have an undiagnosed seems to be backed up by the fact that Our survey findings are based on the hernia. So we have a common just under half of urostomists continued experiences of over 300 colostomy, complication of stoma surgery which using the same type of appliance. Of those ileostomy and urostomy patients who patients are failing to spot, but stoma care who changed their appliance, the majority had been diagnosed with a parastomal specialists can diagnose on review. had switched to a convex adhesive. hernia. They told us about their clinical diagnosis, the type and severity of Table 1 Changes in stoma size problems they encountered, how they Colostomy Ileostomy Urostomy Al managed their hernia, what sort of (74)^ (38)^ (18^) (134) appliances they used, how they rated %%%% them, and how they felt about it. Average size at first 34.0 29.3 30.0 31.9 This article focuses on urostomists, Average size changed to 42.1 35.2 39.1 39.4 but generally the results were similar regardless of ostomy type. Unless Average change in size 8.16 5.92 9.11 7.51 otherwise stated, any figures given are for urostomy patients. ^ = Note small sample size

20 UA JOURNAL LIVING WITH A PARASTOMAL HERNIA Table 2 Leakage timing summary The majority of stomas leak at some time during the day and night, but we Base: Colostomists Ileostomists Urostomists All found urostomists who reported leakage All experiencing leakage (105) (79) (26)^ (213) seemed to have them both during the %%%% day and at night. Day time only 17 13 11 15 Leaks during the day seem most likely Night time only 18(*) 6 4 12 to happen on a weekly basis or less Both day and night time 64 76 85 71 often. People describe daytime leaks equally as fairly bad or not very bad. ^ note small sample size (*) statistically significant compared to Ileostomists Night time leaks are slightly less frequent, usually happening monthly or less often, Another main area of concern was Over 25% of urostomists said they had but are likely to be described as bad the condition of the skin around the noticed that the skin around the stoma ones. We don’t know whether this stoma. Most urostomists seldom, if ever, had become thinner. If the skin is thinner, difference in rating of daytime and night reported problems with their skin it’s more likely to be damaged if there’s leakage is due to factors such as the before developing a hernia. After a a leak, or when they change their pouch. timing or location of the incidents, but hernia developed, the frequency and Changes in the size of a stoma and it’s not unreasonable to speculate severity of reported skin problems rose. the condition of the surrounding skin whether the psychological effect of a People said their skin became more can have a noticeable effect on how well night time leak is sore, red/irritated, and itchy. a pouch fits. If the pouch doesn’t fit more distressing The biggest change people told us properly, there is an increased risk of because it happens about was changes in skin thickness. having a leak. during sleep.

“I’ve had my stoma since 2009. My hernia was diagnosed about Betty’s story 10 months after my original surgery for bladder cancer. A urostomy patient “I get a lot of mucus discharge from my stoma. I also feel some discomfort around the stoma. It’s like there’s something dragging living with a or pulling on it. parastomal hernia “Before I had the hernia, I rarely had any problems with my skin. It used to get a bit red, itchy, or sore, but it wasn’t very Age: 70 years bad. Now I get problems more frequently and they seem to be Gender: Female a bit worse than before. The biggest change I’ve noticed is that Weight: ‘About right’ Stoma type: Urostomy the skin seems to be getting thinner. It feels more sore and Stoma age: 2 years itchy now, but the skin doesn’t seem to be as red or irritated. Appliance type: One piece “I’ve also noticed that my stoma has changed size. It’s grown Adhesive type: Flat Change frequency: Once a day about the width of a fat pencil, which makes it more difficult to Hernia diagnosis: Stoma Care Nurse put on a pouch. I haven’t had to change my appliance, but a number of people I know have started using a convex Betty is a composite persona based on adhesive. research conducted by Salts Healthcare Ltd. “The other problem is leakage. I can get a leak during the We’d love to hear your views. Get in contact at: day or at night. It happens about once a week during the day, and Salts Healthcare it can be fairly bad. I get leaks less often at night. It’s only once a Richard Street, Aston, month, or so, but it’s bad when it happens. Birmingham B7 4AA England “I’m more self-conscious since I found out I had a hernia, but I don’t tend to Email: [email protected] worry about it. I still manage my stoma the same way. I rarely ask for help, but if I Website: www.salts.co.uk do need it, I’d generally ask the Stoma Care Nurse at the hospital’. Facebook: facebook.com/SaltsHealthcare

LIVING WITH A PARASTOMAL HERNIA UA JOURNAL 21 Management this may be something to do with the fact appropriate individual management It’s interesting to note that despite the that over half of hernia sufferers rarely, if techniques to look after the physical and fact all the respondents had ordered ever, sought help from a trained stoma psychological effects of a hernia. support garments, just under half the specialist once their hernia was diagnosed. One way to understand the study said they used support belts or challenges is for us to try and focus on girdles to manage their hernia, and only a Conclusions the individual rather than get lost in the quarter of urostomists thought it was the This study has given us information about statistics. We have created ‘Betty’, a best way to manage a hernia. The most the diagnosis, effects, and management of ‘typical’ urostomist suffering with a popular management technique favoured parastomal hernias. We know that people parastomal hernia. Betty is a fictional by urostomists was to be careful, avoid generally start developing a parastomal character (see page 21), but her story is heavy lifting, and don’t overdo it. hernia within a year of surgery, many based on the experiences shared by real Finding a mental attitude being classed without realising it. We know reviewing urostomists diagnosed with a parastomal as a good management technique might patients regularly for the signs and hernia. We use Betty as a thumbnail be surprising until you delve a little deeper. symptoms of a hernia can help reduce sketch to remind us about what she has Although just over half of urostomists management problems. However we to deal with and how she copes. With agreed that having a hernia had made don’t understand enough about her help, Betty will keep us on track to them more self-conscious, just over 40% management techniques, and we may be deliver better results for her and others said they worried about it. We don’t know wasting time and money on things that who need help and support with a whether this is because people think a don’t work. It’s clear we need better parastomal hernia. Read Betty’s story hernia is part of having a stoma, or they understanding of the needs of the patient. now to see what you have in common don’t want to appear concerned. Certainly, It’s also important that we develop more and where your story differs. n

22 UA JOURNAL LIVING WITH A PARASTOMAL HERNIA