IMPRESS has collected stories from patients about their experiences with different conditions and treatments. To read the stories please click on any of the links below:
Samantha’s Story - Her story discusses different treatments she has tried and their varying effectiveness. I am a qualified doctor but currently unable to work due to poorly managed FI. As well as affecting education and work, UI and FI can impact on self-esteem and relationships to a huge degree, which I feel can be underestimated by many health professionals and those who are not affected by these conditions. Without the help of medical technology, I have no control over my bladder and bowel function whatsoever. This can lead to me feeling that I have no control over my life. Thanks to Botox injections into the bladder wall muscle, I am currently continent of urine. Botox stops my bladder contracting involuntarily and unexpectedly, which leads to accidents. I have these injections once every 18 months and they have transformed my life. I spent many years noticeably wetting myself in public, which was very humiliating and difficult to manage. Prior to Botox, I took anticholinergic medication such as oxybutynin, which was only partially effective and caused side effects such as dry mouth, blurred vision and a racing heart. I also tried Macroplastique bulking injections into the bladder neck and ‘Periform’ pelvic floor exerciser, which were ineffective. My urologist has recommended a new medication that may result in not needing Botox anymore, called Mirabegron. So far I have not had any side effects but it is still too early to tell whether it will be helpful or not. I cannot empty my bladder voluntarily and therefore perform intermittent self-catheterisation 5 times daily. I have tried many types of catheters over the years and currently use catheters by Coloplast, which are pre-lubricated, discreet and disposable. I also take a daily low-dose antibiotic (nitrofurantoin) to prevent frequent urinary tract infections that can be common in people who self-catheterise. Alongside FI, I have co-existing chronic, severe constipation to the point of developing faecal impactions high up in my colon. Laxatives work very unpredictably and usually lead to bowel accidents, which are understandably very distressing. I have tried the pro-kinetic drugs that have been developed more recently, with little success but am currently having good results emptying my lower bowel using the Peristeen trans-anal irrigation system. Tap water is pumped into the colon using a balloon catheter, pump and water bag & the stool is flushed out alongside the water. I have had 2 trials of sacral nerve stimulation (SNS), which is a form of neuromodulation that aims to improve the function of the sacral nerves that control the bladder and bowel. It is still not well understood exactly how it does this and therefore difficult to predict who will benefit from the intervention. Temporary electrode wires were inserted into the lower part of my spine, alongside the sacral nerves. The wires were connected to an external control unit that I wore for 2 weeks. If there is a significant improvement in symptoms, the permanent SNS ‘pacemaker’ is implanted under the skin. Unfortunately, this technology did not help me, however I am currently on the waiting list for PTNS – posterior tibial nerve stimulation – that aims to alter the sacral nerve function in a different way. PTNS is delivered as an outpatient procedure, where an electrode needle is inserted near the ankle and the stimulation delivered over 30 minutes. This is repeated once a week for 6-12 weeks depending on response, followed by top-up sessions if effective. Other technologies that have been discussed with me include the FENIX magnetic anal sphincter and, as a last resort, a permanent stoma in the form of an ileostomy. I am desperate to reach a point where I am in control of my bowel, and it is not in control of me. I want to get back to work and use my own experiences to positively impact my patients’ lives. I wholeheartedly support the work that IMPRESS is doing to research and develop new technologies to improve the quality of life for people affected by urinary and faecal incontinence.
Michael’s Story - he talks about the impacts of living with Crohn’s disease and how it inspired him to create a solution. Four and a half years ago I woke up in intensive care having become only the 11th patient to undergo a rare intestinal transplant at The Churchill Hospital Oxford. Some twenty-five surgeries later and intestinal failure I found myself with only 40cm of small bowel left and transplant was my only option. On waking from fifteen hours of surgery the one thing that I remember clearly was feeling this bag attached to the outside of my stomach. As part of the transplant I had an ileostomy which is where part of your bowel is brought to the outside of your stomach and your bodily waste collected in a bag known as a stoma bag. I had spent the best part of thirty years on various medical bags but with a stoma you lose control of the very thing you take for granted, going to the toilet. The nerve endings are cut and you have no idea how much comes out and when. This results in frequent leaks and spills and one of the most common ways for healthcare professionals to measure gut functionality is to know what is coming out and when. At the time the only solution was to empty your effluent in to a jug and manually measure. For me there had to be another solution. I am permanently connected to my mobile phone like so many others so I just assumed there would be technology to help me. I looked at all the bag manufacturers and saw how much work they were putting in to the bag, it filters and new functions but still did not satisfy what I was looking for. Thanks to the wonders of social media, I was able to contact patients all around the world to ask what their solutions were and the overwhelming response was just to get used to it. So I searched online and found various different components from different parts of industry. Flex sensors that came from the gaming market, accelerometers from mobile phones and Bluetooth module and thanks to the power of video and a friend I hacked together my first sensor. That sensor became the start of 11Health. 11Health then grew in to a connected medical device company. We now have a fully functioning sensor that is CE marked, MRHA approved a class 1 device and is FDA cleared. Currently we are growing fairly rapidly in the US but still navigating the wonders of our NHS system. Kathy’s Story - she talks about the complications she has experienced since undergoing bladder sling surgery. Iwas a healthy and happy mum of two teenagers but had a niggling problem of suffering life’s little leaks when I exercised. Two days after the mesh TVT bladder sling was inserted my nose started dripping. I thought nothing of it, but then leg pains intensified and with each step I became more and more scared. How on earth had I gone from a super fit mum who did high board, diving, boxing, swimming and cycling, to now struggling to potter around the house or walk my dog around the block? The pain put me on nerve blockers and tramadol and left me with sleepless nights of regret. The leg pains were like intense toothache all down the back, it felt like somebody had punched the base of my feet and at times like my legs and ankles were being lashed with barbed wire. I had burning pains in my groin and private parts, severe stomach acid reflux and it hurt to sit for too long. With hindsight I should have done my research because I had no idea the sling was made out of polypropylene plastic. Seven months after it was put in, I had my mesh removed with corrective surgery in Oxford in October 2015 The pain has pretty much subsided and I am off all the medication which I relied on however I will never go back to what I was. I can now no longer put any impact on my legs so activities like running or skipping are gone forever. I also find if I overstretch my legs in activities like yoga then the leg pain returns. Kneeling down or doing squats also sets off the leg pain. I am so determined to overcome these problems that I still go boxing but make sure I don’t bounce on my legs in any way. I swim and go on long dog walks but every day I am mindful of all my movements to make sure I do not do anything that could trigger the horrific leg pain. Karen’s Story - Karen’s story is a sobering account of her on-going battle to find a successful treatment for her debilitating chronic Painful Bladder Syndrome and Hunner’s Ulcers. Iam a 44 year old police officer who up until 6 years ago, would have considered myself to be mostly fit and healthy. My energy and concentration levels became so low, that I struggled to perform in my job. I became severely depressed and suffered with anxiety as a consequence of all these symptoms and the fact that I felt like the specialists and some of my colleagues thought I was a hypochondriac. I was placed on Mirtazapine for depression and anxiety as for some reason I couldn’t tolerate any other anti-depressants. The drug gave me symptoms of cloudiness in the head and severe panic attacks and subsequently about 12 months later I stopped taking it. This is when the infections got worse and the frequency in urination became apparent. I had already suffered a number of intolerances to antibiotics and other drugs, so when I suffered with gastroenteritis and the norovirus I experienced severe pain around my bladder area. I had also started to experience severe anxiety symptoms when eating certain foods and drinking alcohol. The frequency and urgency with urination got progressively worse and so did the intolerances. I could use the toilet more than 30 times during the day and night which caused me to suffer with the most horrendous sleep deprivation and pain in the urethra. Doctors just stated I had UTIs and prescribed more antibiotics. Eventually, almost 3 years later, I was referred to an urologist. I had already conducted my own research regarding my symptoms because I knew there had to be an explanation for how I was feeling. A bladder distention and cystoscopy were performed, which confirmed my suspicions of a disease called Painful Bladder Syndrome (PBS) or another term for the diagnosis is Interstitial Cystitis (IC). My bladder capacity was extremely poor due to the bladder disease therefore causing me to void more frequently. I was given weekly instillations of Cystistat into my bladder for 12 weeks and then continued with this treatment every 2 -3 weeks. Due to no changes in frequency I was then given a similar treatment called Hyacist in a higher dose. Unfortunately this treatment has not improved the urgency and frequency that I suffer and due to my intolerances of other drugs I am limited in what treatment I can have. I also suffered with intolerances to most foods and beverages which caused my stomach to swell constantly and left me with symptoms of Irritable Bowel Syndrome. Due to feeling so depressed with this debilitating illness and feeling like I had no quality of life left I was referred to another specialist. The consultant performed another cystoscopy, bladder distention and expansion of the urethra to confirm again the diagnosis of IC but also found Hunner’s Ulcers within my bladder wall. I was told my bladder was in such a state that I should consider having it removed. Naturally I was devastated and felt that there must be something else that could be done before electing for such invasive surgery. My whole life revolves around my bladder and bowel symptoms. I have to toilet map wherever I go and do not drive to places that are unfamiliar to me due to the constant worry of not being able to reach a toilet. I have a car with blacked out windows to allow me to use my own adaptions inside it if I have nowhere else to go. I avoid using public transport and aeroplanes for the same reasons. I am panicked by the thought of not having access to the appropriate facilities. Specialists advised me not to use a catheter as this causes infections and therefore I have tried and tested many products on the market to assist with voiding but none are suitable for my needs. If I could just produce a product that would allow myself and others suffering the same problems to void discreetly and take away the fear of not having toilet facilities close by, then I am sure this would alleviate some of the anxiety and pain that is suffered with this horrendous incurable disease. Chris’s Story - he talks about how having to tackle incontinence in adulthood has been so affecting. Iwas born with a rare metabolic condition which was diagnosed when I was five. By the age of ten I had developed severe hip problems which caused significant disruption to my time at school. Things began to deteriorate in my mid to late twenties when I began experiencing occasional bedwetting and then the odd day accident. This has gradually progressed into a significantly overactive bladder with severe urge incontinence and more recently bowel control problems. The occasional wet bed I would put down to sleeping deeply or a heavy night out but when it became a more regular occurrence I blamed it on stress because I was working long hours in a difficult job at the time. Severe embarrassment meant I largely suffered in silence and managed the condition myself, entering the twilight world of mail order purchased products such as waterproof mattress protectors, bed pads, absorbent incontinence underwear, and plastic pants. When I moved in with my then partner, now wife, she encouraged me to seek help and I finally saw my GP in my late twenties. I tried medication and was briefly referred to our local NHS continence service but due to my continued embarrassment and lack of treatment success I went back to self-management. Things seemed to improve and often months would go by without me experiencing any problems but when I had to change jobs my stress levels increased significantly and as a result my symptoms escalated and the bedwetting became a nightly occurrence. I sought medical help again and, after trying further medication with little success, I was referred to a specialist in London but despite further tests they could find nothing wrong. Unsurprisingly, I became disillusioned and went back to self-care. My symptoms progressed and I began to have the odd accident during the day. When a phase of extensive business travel led to accidents in train stations, in desperation and for peace of mind, I started to buy incontinence pads for use during the day. They often made things worse because they are difficult to get on and off particularly when you need to use the toilet in a hurry. I referred myself back to our local continence service and they suggested a course of intensive bladder retraining along with medication. My night time problems deteriorated further and I started to use a sheath and bag system recommended by the continence service and supplied on prescription. I also used this product during the day for a time, particularly at work, when I got fed up dealing with the indignity of having to wear the larger nappy style pads. Due to my increasing levels of incontinence, sadly the system became ineffective and I reluctantly went back to using pads. I am now completely incontinent at night and have very limited control in the day. In 2017, after nine years of tests, I was finally diagnosed with a severe overactive bladder and poor pelvic floor muscles. I’ve tried countless medications and done numerous pelvic floor exercises with little or no improvement. I have been trying electrical nerve stimulation at home and am on a waiting list for other potential treatments. Over the years I’ve become adept at managing my problem, and if you met me, you wouldn’t notice. I’ve got over my initial concerns about wearing products and devices when out in public but I never truly relax because at the back of my mind there’s always the fear, real or not, that someone will notice something – a wet patch, an odour, or a puddle on the floor. Recently I started to experience difficulty controlling my bowels which has led to occasional episodes of faecal incontinence. Even though I’ve been coping with urinary incontinence for several years this lack of bowel control has been particularly hard to deal with. I manage it by careful monitoring of symptoms to help me know if it is ok to go out. Should the worst happen I try to find a toilet and change as quickly as possible because the tell-tale smell of faeces is very hard to hide and the damage to skin can be significant. I keep a ‘clean up kit’ and change of clothes always to hand and I use pads and other devices such as anal plugs. Embarrassing physical health problems can have a huge impact on your mental health and I have always struggled with severe anxiety and panic attacks. The effect on self-esteem of dealing with faecal incontinence should not be underestimated and on many occasions the highly unpleasant consequences of having been doubly incontinent have left me feeling utterly wretched. Living with incontinence is not easy and I often feel extremely low but I try not to let it stop me from doing the things I really want to, particularly in terms of family life and seeing friends.
My journey to that point started over thirty years earlier when as a twelve-year-old I was diagnosed with the incurable bowel condition known as Crohn’s Disease.
It wasn’t the end of the world but when I heard about a simple little 20-minute day case operation to fix it I jumped at the chance. I was told it was the gold standard treatment with minimal risks and that I would be healed within a week.
During 2010 I started to suffer continuously with gastroenteritis and urinary tract infection symptoms. I noticed that if anything was going around I would surely pick it up! I constantly felt fatigued and in pain within my lower stomach area and suffered agonising back pain. At times I would pass out for short periods and come round feeling like I had been hit by a sledge hammer all over my body. I would frequently visit my GP and A & E departments, only to be told either that I had a Urinary Tract Infection (UTI) or they couldn’t find anything wrong with me. I have since established the lab tests for the UTIs were mostly negative.
Today, I still live with the legacy of these two conditions, namely low vitamin D, osteoporosis and osteoarthritis. I’ve always had health issues but I never imagined that I would develop significant bladder problems in my early thirties. I didn’t experience any major problems growing up apart from being a late bedwetter and so the medical profession is divided over whether my adult continence difficulties are directly linked to my metabolic problems or completely coincidental.