If we have a physical illness most of us wouldn’t think twice about contacting a doctor to remedy this, however those who are suffering emotionally or mentally are reluctant to reach out for any help. Having a physical illness like a bladder or bowel condition can sometimes lead to a decline in mental health, especially for those with a chronic illness who are living lives dictated by their diseases. Most people with a bladder and/or bowel condition will experience feelings of depression, anxiety and isolation at some point. Unfortunately anxiety can also increase symptoms of a bladder and bowel disorder creating a never ending cycle.
For #mentalhealthawarenessweek, we’re encouraging people to open up and talk about their experiences of how having a bladder or bowel disorder has affected their mental health. Just talking to someone can help alleviate those feelings of isolation and lessen the burden of the stress of living with a health condition. Three brave members of our community agreed to share their experiences.
Fiona’s Story:
‘I was diagnosed with schizophrenia at the age of 19 years, I am 59 years old now, so for 40 years I have struggled with my mental health, which ended up with me regularly requiring inpatient treatment to get under control. I have been on various medications to treat my mental illness and although depot has had some significant and painful side effects for me, this has kept me stable for the past 10 years.
In 2010 I developed a prolapsed bowel that took nearly three years to get the right treatment for. I had a ventral mesh surgery and still I suffered from appalling bowel symptoms that would leave me needing to go to the toilet up to 25 times a day. Having this bowel condition affected my mental health greatly, having to go to the toilet so often kept me awake at night. I suffer from insomnia anyway but this increased my general anxiety and reduced me to a state of both physical and mental exhaustion, and indeed self disgust. I felt socially isolated.
I find that my hobbies are my lifesavers and help with my overall mental health. I am a performance poet and I attend open mic nights each month. I’m also an amateur photographer and I am a member of a great photography club. We go out to local scenic places to photograph what’s around us. Doing these activities has increased my confidence, helps keep me focussed and stops me from vegetating. It gives me a sense of pride and achievement. I couldn’t exist without them.’
Paul’s Story:
‘I’ve suffered from Crohn’s disease and ulcerative colitis for over thirty years. For many years it was controlled with medication and I would go into remission, but in the end nothing was working so, around 5 years ago, my consultant decided that I should have my large bowel removed. My wife left me as I underwent surgery. We tried again shortly afterwards but she couldn’t cope with my stoma. We had a very active relationship before it but afterwards nothing. It hit me hard dealing with the change in my body and I suffered from erection problems.
I hated what the illness had done to me. I couldn’t work, I lost my partner and many friends. I managed to meet someone else through a stoma site on Facebook who had the same operation as me and I ended up moving to be with her. Last year I had my rectum removed and that’s when my bladder nerves were damaged. I’m now totally reliant on the suprapubic catheter but I also pass urine through my urethra so I wear thick pads. I’m 52 and I feel like I’m an old man. I had a good job before my last operation and I lost it because they couldn’t offer me an alternative role. I’m probably going to have my bladder removed in the near future.
I’ve been in a very bad place – close to ending my life a number of times. I’ve been attending a cognitive behavioural therapist which is helping a little. I’ve just started doing some volunteer work in a man shed locally, where I’m learning DIY skills and helping others too. My partner is very supportive but in some respects I resent her because she’s had the same operations as me and is working full time. I’m still very isolated being at home alone for long periods but I’m working hard to improve things physically and mentally too.’
Victoria’s Story:
‘In 2005 I was diagnosed with an overactive bladder, I was 22 years old. I had a cystoscopy and urodynamics to diagnose. I was prescribed tablets for the condition and after around a year, the medication did help calm my bladder. My medication was then changed to vesicare and I was told I could increase the dose if I needed to. However around two or three years ago I was finding I was going to the toilet more and I would always joke that I had bladder anxiety. I also found that I was spending more time on the toilet. The situation became worse and last year I started developing urinary tract infections and I couldn’t understand why. At this point I was spending up to 30 minutes on the toilet and still feeling like I needed to go.
In February this year I had another cystoscopy and urodynamics test which showed I had low muscle pressure on my bladder and that I was retaining urine. The Urology Nurse said she could teach me self catheterisation and she thought the problem was due to years of being on medication for my overactive bladder. I’ve seen a urology consultant who are still looking into it but they have also agreed that the medication has made my bladder ‘floppy’. I had an indwelling catheter for two months which slightly helped my muscles.
There aren’t many treatments available for bladder retention unfortunately. I use the term bladder anxiety as I’ve felt for many years that the condition has limited my quality of life, especially going out in public, as I always need to know where the toilets are. It’s affected me socially and me travelling. I travelled a lot as a child and I loved it. I feel it has robbed me of my freedom at times. People would say “don’t let your bladder rule you”, but I had no choice.
However since using the catheters I now do have more freedom and even though the thought of it made me physically sick, I realise now, with the retention, how poorly it was making my body. When I had the indwelling catheter fitted, within a few days my energy levels were up, my skin started to clear up and I had more colour. My Urology Nurse said that it was all the toxins coming out of my system.
My anxiety is still here, our aim as a family is to be able to go on holiday later this year, something that the last few years I couldn’t even think about but I’m determined to do.’
If you have a bladder or bowel condition and experience feelings of depression, anxiety and isolation, it can help to talk to others who are experiencing a similar situation. This is why we have set up a closed support group on Facebook, a safe place where you can open up about your issues and share your stresses and worries with like-minded individuals. We now have a community of over 5,000 member, which is still growing. This shows how many of you are going through difficult circumstances. You can find our Facebook group here.
