Hey, my name is Beth, I am 28 and live in South East England. I work in Children’s Palliative Care and I have recently had stoma surgery. I like to spend time with my friends and family, I enjoy travelling, going to festivals and making memories.
I was diagnosed with Slow Transit Constipation in 2014 after years of chronic constipation. I tried various treatments for this including: 2 failed rounds of biofeedback therapy, otherwise known as bowel and pelvic floor retraining. Various different laxatives, rectal irrigation systems and enemas with no relief of symptoms. Last June my condition got significantly harder to manage, leading to me living on a soft- liquid diet and in a lot of pain. After being seen by multiple specialists across 4 different hospitals I was seen at University College London Hospital, where I went on to have my stoma surgery in March this year. The surgeon opted for a loop ileostomy with the option to carry out further surgeries later down the line, if necessary. The surgery itself was tough, which was to be expected, but the outcome afterwards was worth it. I spent 9 days in hospital due to complications with a post- operative paralytic ileus. Once I had recovered from that, life with Paloma has been a lot easier than life before.
Slow Transit Constipation, is exactly what it says on the tin. It takes food a long time to travel down to the bowel, in my case, I suffered from abdominal pain, nausea, abdominal distention (bloating) sickness and chronic constipation. This was diagnosed by carrying out a transit study. I took a series of pills with magnets in (which is not as scary as it sounds, it is the size of a paracetamol capsule) I then had a series of X-Rays across a 6 day window. On day 6 all of the magnets were still in my digestive tract, this confirmed significantly delayed colonic transit. I then had this repeated again last year, and the results were the same. STC is a condition which isn’t commonly spoken about. As soon as you say ‘constipation’ people suggest trying prune juice and yoga, which of course has its benefits, but for me, I had tried dietary changes and various other alternative therapies, with very little effect. Since my surgery, I have been very open about the condition and been surprised at the amount of people reaching out that have suffered in silence.
I think for me, it has been more of a physical challenge. Which is ironic, as someone that has suffered with mental health issues for years. I think, because I felt so unwell for so long, my quality of life was not what I wanted it to be. Therefore, the surgery giving me my life back, has actually improved my mental health. Don’t get me wrong, I have days where it feels hard work, but my life before was so tricky, this is the easy bit. I am aware, for a lot of people, having a stoma is really traumatic. I found the recovery traumatic myself, but once I got past the ‘firsts’ with a stoma, I found it got easier. It is still early days and I realise there will be hurdles, but I am okay with that.
The way I view my stoma/surgery has changed over time, I was so worried prior to surgery about seeing it for the first time, however, when I woke up in recovery they had to do a bag change straight away, which took the fear away- thanks to the help of sedation making me feel like I was up in the clouds. I found it hard to look at it and clean it for ages, there would be days I would avoid doing a bag change because I didn’t want to see it. Now, I look at it like I would my arm or my leg, it just feels normal. I have days where I sit back and think about how traumatic the journey has been, but I look at it in a positive light. I feel very lucky to have my stoma, I don’t regret any of it.
Social media has been a huge help for me. Seeing other people with stomas and following their journeys has given me the courage to not care about my ‘new’ body. There is also lots of information on Colostomy UK, Coloplast, Respond, Convatec, Pelican and various other stoma supplier websites. The hospital gave me lots of information, as did my stoma nurse. In my local area there is also a company called Secure Start, they phone you regularly after your surgery and have an app to keep all your stoma information on. You can phone them out of hours for advice if you have any worries.
My biggest piece of advice would be, have an open mind and don’t be scared to ask us questions. I have been asked all sorts of questions and I don’t mind at all. If you think your question may be offensive or upsetting, google it, google has all the answers! Also to look after your body! You only get one... Don’t listen to what others say, nobody has permission to comment on your imperfections. Your imperfections are what make you, you.
To new ostomates I would say research, but don’t be put off by people’s not so positive experiences. Everyone’s stoma journey will be different and no day is the same. I would say, write down questions as you think of them, then ask your stoma nurse if you have any concerns. They have heard it all, so no question is a ‘silly’ question.