Samantha’s Story

Read Samantha’s story as she talks about different treatments she has tried and the results from each.

Without the help of medical technology, I have no control over my bladder and bowel function whatsoever.

I am desperate to reach a point where I am in control of my bowel, and it is not in control of me.

Ihave been dealing with both urinary and faecal incontinence (UI & FI) for 26 years, since the age of 11. This caused significant damage to the nerves controlling my bladder & bowel function.

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.

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