Woman who got permanent stoma bag says the surgery gave her her life back

In January 2020, Lauren Woodhall, 22, suddenly began to need the toilet up to 40 times a day.

Anything she ate or drank would go straight through her in a matter of seconds. It got to the point that ‘even thinking about food’ would make her need to go to the loo.

Lauren, who works in the RAF as a physical training instructor, tells Metro.co.uk: ‘My body would give me minimal warning for the need of the toilet and a lot of the time I wouldn’t make it.

‘I had numerous accidents in the car and in bed, which is so unlike me as a healthy 22-year-old. It was mortifying at the time.

‘A lot of my stools had blood in them – sometimes being purely blood.’

Lauren’s symptoms became so severe that she had to be signed off work and was confined to her bed for most of the day.

‘Standing up would cause bowel movements’, she continues. ‘I became scared to leave the house – even turning over in bed would mean a toilet visit. It was as if I could feel the liquid in my stomach moving.’

‘I became physically drained and gave up on eating. It was a vicious cycle, knowing that I needed fluid and calories, yet also knowing the pain that would follow.

‘Some toilet visits were so bad pain-wise that I would ring my partner or parents to make sure someone was on the other end of the phone in case I collapsed’.

Her family took Lauren to hospital shortly after her symptoms started, but at first she didn’t think it was anything serious.

She dreaded going to the doctor and talking about bowel movements, which felt too embarassing to bring up.

But when she went to A&E, Lauren says she wasn’t taken seriously. After 12 hours, she was diagnosed with diarrhoea and vomiting – even though she hadn’t thrown up once.

She was then left in a side room with a commode for another 12 hours. She claims that each time she tried to get help for the pain, she was told to ‘just sleep it off’.

Eventually Lauren was discharged with a course of steroids and told she had symptoms of Crohn’s disease.

The steroids had no effect, however, and soon after, Lauren was admitted to the hospital for a week to monitor her symptoms. She left, spent a week at home, then was readmitted, and this time she was put on to chemotherapy infusions for four weeks.

This treatment didn’t help either, and finally, after weeks of struggling, Lauren was diagnosed with ulcerative colitis.

Lauren says: ‘I tended to bloat and bloat throughout the day, and then spend hours at a time on the toilet in the night. This was so physically draining.

‘By this point I had lost around two stone, and felt trapped in a cycle between my bed and the toilet.

‘On my third admission to hospital, I was an inpatient for around four weeks. After many more colonoscopies, I was formally diagnosed with ulcerative colitis.’

During the third admission to hospital, Lauren’s doctor brought up the option of a stoma bag multiple times – but, she wasn’t keen.

She was kept ‘stable’ on IV steroids and morphine. She lived in hope that she would ‘just wake up one day and have no symptoms’.

Three months later, in March 2020, Lauren underwent an operation to remove her large bowel and to have a stoma bag.

‘I felt I had no end goal in hospital,’ she explains. ‘I had to show my stool diary to the doctor each morning, who would then keep me going on steroids and morphine until the next day.

‘I was given a date that we worked towards as a next review on my symptoms. At this point, a stoma bag was mentioned again, and I said yes.

‘I was so physically and mentally tired that I felt relieved to have made my mind up. I remember the doctor being taken aback at how quick my response was and he did give me the night to sleep on it… but my answer remained the same.’

Lauren says she chose to have a stoma bag to ‘be rid of the pain’.

She continues:: ‘My days were spent in bed and I was really struggling mentally. I had a lot of contact with the hospital chaplain who helped me remain positive. I was told that I could repeat the treatments that had already been tried, but even if they did put me into remission, I feel I would have spent my life constantly waiting for a flare up.

‘Being in the military, life is quite unpredictable at times. My job involves being very active and being outdoors. I couldn’t have managed that.

‘I hated the thought of constantly being on sick leave from work and not knowing when I would next be poorly.’

Lauren says she ‘wasn’t confident at all’ about the surgery. She cried while being wheeled down to the operating theatre and was terrified about how her body would look.

‘Being a young female fitness instructor, body image has always been important,’ she says. ‘I also have a boyfriend of five years, who was the most incredible support, but I still felt ashamed and as though I was letting him down. I felt he deserved better.’

Having surgery amid the coronavirus pandemic added further challenges – but Lauren was immensely thankful for her family and friends, who made sure to give her plenty of support even if they couldn’t be with her in hospital.

‘Having support from family and friends is so important,’ says Lauren. ‘I had my surgery at the height of the Covid-19 pandemic and therefore had no visitors to hospital.

‘However, through phone calls and Facetime I have never felt more supported. I worried about complications in the surgery, with it being so invasive, I talked myself into thinking it would go badly wrong.

‘My family and friends were all so supportive. They had been through the whole journey with me and knew the amount of pain I was in.

‘It upset me to know how worried my parents were, as they weren’t allowed to visit, so I tried my hardest to make light of the situation – I thought of a name for my stoma bag (Barry) and joked about having a real ‘bag for life’.

‘I was totally overwhelmed with the support I received through social media, with over 200 messages being sent to me before the surgery.’

Lauren, whose surgery was keyhole, meaning she has minimal scarring, says she felt ‘confused, relieved, upset and scared all in one’ after waking up and seeing her stoma bag.

But she maintains that making the difficult decision to get a permanent stoma bag was absolutely the right call.

‘I had so many questions, yet such little energy to ask them,’ she said.

‘Everything was so new to me and you must let dignity take a pause.

‘All the doctors and nurses were so kind and helpful, making me feel so at ease when dressings needed changing.

‘Having the nurses empty my stoma bag for me made me feel so vulnerable, but I learnt along the way and eventually got to grips with it myself.

‘I do remember my stoma nurse telling me not to hide from my stoma bag and to look at it and be involved straight away; this was the best advice I was given. My stoma bag doesn’t define me, it’s just an extra part of me.

‘Like anyone after surgery, the recovery is difficult. Mobility and energy levels are low, however these built over time. I am used to being very active, so I was keen to get fit as soon as I could.

‘I remember my boyfriend taking me on a walk about 6 weeks post-surgery and I felt as if I had run a marathon! I am still not where I want to be, however I have learned more than ever to be kind to my body and to listen to it.’

Lauren says that she has always been a confident person, but of course she has ‘off days’.

With her surgery taking place during the pandemic, she was able to get used to her stoma in her ‘own little bubble’ and learn to accept her body again.

She tells us: ‘This was great for my own mental health at the time, but has meant that other milestones have been delayed.

‘Seeing other people for the first time, being in a swimming costume, eating with others – stoma bags tend to be a little noisy whilst eating – were all hurdles that were challenging but rewarding.

‘My stoma bag saved my life so why should I hate it? I’m not ashamed to say that I feel proud of what my stoma has done for me.’

Lauren, whose stoma is permanent, says her boyfriend was very caring when she first came home from the hospital. There were a lot of ‘help books’ for partners and he read them – and the pair were open with each other and felt comfortable around the subject.

She’s now sharing her story to encourage others to embrace their stoma bags.

She continued: ‘I dreaded the comments of “you look no different” and “you can’t even see it” as I knew they would be untrue. My stoma bag is there, and it is very visible, however you have to make the best of it.

‘I wear different covers on it to jazz it up and try to be very open to questions anyone may have.

‘Some people see a stoma as dirty or unclean which is so far from the truth.

‘To see comments online about how “disgusting” they are and people “gagging at the thought of them”. It’s hurtful. We go to the toilet just like everyone else, it just exits the body differently.’

‘The only comments I have received that I don’t take on board are the “I feel so sorry for you” or “it’s such a shame this has happened”.

‘I chose to have a stoma so that I could live again. It could have been a very different story if I haven’t had the surgery.

‘People mean well, but I am thankful for my stoma bag, I don’t want pity.’

Lauren has struggled with her mental health, has days where her ‘stoma bag won’t sit or stick right’, and she experiences some leaks and discomfort. However, she says the good days far outweigh the bad.

Lauren feels like she 100% made the right decision on her surgery. She doesn’t regret it at all.

She said: ‘My stoma gave me my life back and I am so grateful for that. I have been able to live my life as normal since.

‘I will never take anything for granted again. I’m enjoying every second of going out for meals with friends, long walks, weekend breaks and so much more to come.

‘A stoma bag doesn’t stop you from living a perfectly normal life.

‘If I hadn’t had the surgery when I did, the outcome could have been very different.

‘The surgeon spoke to me afterwards and explained how badly infected my colon was; he said it may only have been a matter of days before things became a whole lot more serious.’

She continued: ‘Stoma bags are so unspoken about – especially in younger people. They aren’t seen as normal or attractive. This is often the same story for those suffering with Crohn’s or colitis; nobody likes talking about their bowel movements.

‘I knew so little of this subject before I experienced it first-hand and it’s because of this that I am so passionate about raising awareness. Everybody has differences, everybody has flaws, but everybody is still normal.

‘There are just different versions of normal. I often need to use a disabled toilet due to needing more space to drain and/or change my bag, but I’m not visibly disabled.

‘This doesn’t give me any less right to use the disabled toilet, and I think there needs to be a much greater understanding of this in society.’

Lauren wants other young people who may need a stoma bag to know that life will still be normal, and hat you can still do all the things you love to do.

She says: ‘Sometimes there is so much pressure to be strong and independent 100% of the time; it’s okay to need help. It’s okay to cry. It’s okay to have a rant and say how unfair life is.

‘It’s hard to see an end to a bad situation, but it’ll come. I do not regret my surgery at all and given the option, I would make the same decision again. I couldn’t have carried on with the pain.

‘Five months on, I am back at work full time. I am so happy where I am, and I wouldn’t change that for the world.’

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