I’ve been a member here for a few months but haven’t had the courage to post until today.
My name is Beth, I’m 26 from England.
I’m coming up to my first stomaversary next month on the 12th December and i’m very nervous and feel emotional.
I have diagnosed mental health conditions prior to my surgery and have since been diagnosed with ptsd again from my hospital stay.
I’d like to tell my story.
Going back to last year my symptoms first started on 2nd November 2021, I was on holiday and it just started with diarrhoea. I thought I just had a bug and I’d be fine in a few days. But it wasn’t, after 7 days of diarrhoea and some sickness I contacted my gp. I was sent for blood tests and did a stool sample but was told they were fine. I kept getting worse, I was going to the toilet 10 times a day, having a few accidents and every time I ate I was sick. I got nowhere with my GP surgery.
It came to the end of the November and I was really struggling now, I couldn’t eat anything other than jelly and I was still being sick, I was so weak and couldn’t do much and had so little energy. My stomach was so bloated and I had awful pains, It came to a weekend and I felt so much worse so I phoned 111. They were going to send an ambulance but I said I could get a lift to a&e. I got to a&e and explained what was happening and I felt the judgment straight away that I was in a&e for sickness and diarrhoea but it had been going on for nearly 4 weeks. I was triaged by a very judgmental nurse. She asked why I had come to a&e for just what I had and I explained I had been sent by 111. The nurse told me well they always send people here that don’t need to be here. She told me she wouldn’t send me through to a&e and I could see an out of hours doctor but “they would just give me paracetamol and send me home and I’d have to wait 4 hours so I was best going home and phoning my gp”. I went home crying and in absolute agony.
I was back and forth to my GP but still wasn’t able to get a face to face appointment and was just spoke to over the phone. I was given different anti sickness and diarrhoea medication but nothing made a difference.
Then came the weekend of the 4th December. I was so so poorly and was going grey in the face but I was so scared to go to a&e again and be sent away. I couldn’t get myself up the stairs and had to have assistance, I knew I was Ill but never thought it was as bad as it was.
I started bleeding when going to the toilet and again called my GP on 6th December. I was spoke to on the phone again but this time they agreed to see me face to face. I had to get someone to take me and escort me in because I couldn’t walk alone. The GP did my blood pressure and it was low and he decided I needed to go to a&e just for some fluids and he would refer me to a gastroenterologist.
I never saw that gastroenterologist. I went to a&e, I begged for my mum to stay with me because I felt too unwell to get around by myself but it was refused for covid restrictions. I was triaged and as soon as I walked In the room I threw up everywhere. This nurse said I would be taken straight to a room. I was confined to a room in case I had anything catchy. I couldn’t stop being sick and going to the toilet.
Now from here I don’t remember much.
I know I was taken to a ward and I was told I had inflammation and would need steroids and fluids.
I still couldn’t stop going to the toilet and being sick and it was using all of my energy. It came to the 11th December I was going downhill and I was told I was on the verge of sepsis and I could no longer leave my bed. I was told I had to use a bed pan and had a catheter put in. I’m the middle of the night I was taken down for a ct and abdominal X-ray. I was then woken up at 5am by surgeons around my bed telling me I had a perforated bowel and I needed emergency surgery straight away and would have a temporary stoma.
I was in absolute bits.
I was taken down for surgery and it was worse than they thought. My large bowel was perforated in several places, I had gangrene and when they tried to remove my bowel it literally exploded and disintegrated it was so diseased. My stoma would no longer be temporary. I had my whole bowel and most of my rectum removed except my rectal stump.
I don’t remember coming out of surgery, I was in intensive care for a few days and don’t remember much from there. All I remember is meeting a stoma nurse for the first time and being told I would be out for Christmas. Initially I was told I was doing well. However at some point I went downhill again, I’m not sure on the date because I was so out of it.
I was in hospital for Christmas but I don’t remember it at all. On Boxing Day which again I don’t remember I just know this from being told after, they found out I had a blood infection and an infection in my original incision and I went back to surgery.
They couldn’t stitch me back up and instead I had a vac machine applied to drain my stomach and close the wound using negative pressure. My stoma retracted and they couldn’t get it to stay up.
I was kept asleep after surgery and put on a ventilator and in an induced coma in intensive care again where I spent new year. In January I came off the ventilator and then out of intensive care.
The only memory I have from intensive care is having hallucinations (intensive care delirium) due to infections and morphine.
When I was in intensive care they noticed my pupils were different sizes. They queried a stroke and did a head ct, thankfully it wasn’t. But it’s only starting to be investigated now.
I don’t remember the ward to begin with but around mid January I started to get back to me and can remember things.
I was getting better but still so poorly. I was going down to theatre between every few days to eventually a week in between.
My stoma was still retracted, stoma nurses couldn’t find the right bag for me and I was having leaks several times a day and waking up every morning covered in poo.
I slowly started being introduced to foods after about a month of just being fed through a line in my neck. I was on soup and ice cream for a while then I started proper food and still being fed through my neck.
They decided to start me doing physio, I had been in bed from the 11th December until now around mid January. It was very slow, to begin with I just started sitting up and moving my limbs. At one stage I wasn’t even able to move my own limbs.
As I started moving my arms and legs I noticed my right leg and foot didn’t feel right. I kept telling doctors and nurses but they did nothing.
One Friday evening I started to develop breathing difficulties, I thought it was just a panic attack but when the nurse came over and did my oxygen it had dropped a lot. They pressed the emergency button and I had on call doctors come and tell me I might need to go back to intensive care because they thought I had a blood clot in my lungs. Thankfully I didn’t and it was an air bubble in my lungs which oxygen fixed.
Then a few days later I was told I had caught covid and was going to be put in isolation with 5 others with covid. This time was awful, the nurses didn’t come in the room as often, I wasn’t allowed to see family at all (I was allowed occasional visits from my mum before this because I had been so unwell) and I wasn’t allowed visits from the stoma nurse.
I was constantly leaking and the staff didn’t want to keep changing my bag (I still hadn’t had training) so just kept sticking extenders round so I was so sore.
I wasn’t on my proper mental health medication so I was having constant panic attacks.
Then the worst things happened.
I had been next to this poorly older lady before we both got moved to the covid bay because we both had covid. I knew she was poorly but didn’t know how bad until I woke up in the middle of the night to them removing her body. She passed away in the night and I was heartbroken. The following morning another lady was put in her bed space, that evening she also passed. But this time I heard it all as her family cried out and when they were preparing her body one of the nurses didn’t fully close a curtain and I saw her laying there. I can’t get that image out my head.
About a week later I was moved out of covid isolation into another bay. I was put in the corner of the room next to a closed curtain. I thought nothing of it, it happened frequently I’d they had visitors or a doctor but the curtain didn’t come open. Then came 2 visitors who went inside and I could hear crying. They left and then they came to collect her body. I was so upset again. 3 women passed away in just over a week and I was both upset and terrified.
Another woman was put in the bed opposite and we began talking and we both had a stoma and a vac machine so we spoke a lot. She went downhill massively and was rushed off in the middle of the night to intensive care and I was so terrified she would pass away. Thankfully someone told me eventually she was okay and I was so relieved.
I began the proper physio sessions and began standing. It was terrifying and my body was so so weak.
I remember the first day I was out of bed and got to sit in a chair for my lunch. They told me to sit for a few hours and then nurses and hcas would help me back into bed. 2 hours passed and I asked for help to get into bed. 2 HCA’s came over and said they were going to use a rocking strategy, I was so nervous because this isn’t what the physios used and they were using a rotunda.
I managed to get myself half up with them supporting me but my legs wouldn’t straighten. My legs completely gave way and I fell to the floor. I was in so much pain and crying. They called more nurses and hcas. I was crowded by them trying to help me up. My legs wouldn’t work. I remember one nurse shouting at me telling me I wasn’t trying. Another said I was because I was sweating so much from the effort. They managed to get me back into the seat and said they had to hoist me back into bed. It was mortifying. I was so scared of getting up and sitting in that chair again and it took me days to try again. It’s been 10 months since that and I still have a fear of falling. I’ve only sat on the floor a few times and fear being alone and getting up in case I have a fall.
Eventually I got good with physio, I began walking up and down the bay with assistance and a Walker and then crutches. I kept the crutches for a further 4 months. But when I started this proper walking the physios noticed there was something wrong with my right foot. I knew there was something all along but no one listened to me. It turns out I had foot drop, so I had numbness from my knee to my toes and my foot didn’t lift properly. I was seen by some doctor and given a splint to wear.
Eventually after 2 months I was allowed to have my catheter removed and go to the toilet. I finally had the line removed from my neck. I was eating a lot better and I was moving around more. But I still wasn’t going home because of the open wound on my stomach. The vac machine was working but the wound was too big to be dressed at home so I had to stay in.
I learnt to climb the stairs and I was discharged from physio and one step closer to getting home!
Then the week of the 21st February they said they were looking at me going home. I just needed to manage my vac dressing change on the ward without any sedation. They said it would be painful. I still went ahead with it. They did this on the Thursday and I passed which meant I could go home.
Then finally on Friday 25th February the doctors and nurses all worked really hard that day to get everything in place so I could go home. I was an emotional wreck and so nervous but so happy to be going home after 11 weeks and 5 days/82 days. I had 11 surgeries in this time!
I was picked up at 6pm that night and got to finally go home.
The journey has been slow but I was so happy to be out of hospital.
When I was in hospital my hair wasn’t washed once when I couldn’t do it myself and rarely brushed. When I started brushing it, it began to come out in chunks. A few weeks after I came out of hospital I had lost 90% of my hair and shaved it off because I couldn’t deal with the bald patches. It’s growing back now but I’m so self conscious about it
I had visits from district nurses twice a week for the next 2 months and then when i started driving again they said I could get them done at my GP surgery.
I had my dressing changes done for a further 4 months and finally in August my wound eventually closed.
However unfortunately I’ve been left with a huge hole in my stomach. It’s about 5cm in length, 3cm in width and 4cm deep. I hate it a lot. I don’t mind the scar at the top but I hate the hole but I’m hoping it will be fixed in surgery eventually.
I still see my stoma nurse when needed and she’s truly amazing. About a month after I came out of hospital they found the right bags for me that reduced the leaks. I used convex bags with paste, barrier strips and extenders but have to change my bag at least once a day. It was recommended twice a day at one stage.
My stoma is still retracted and I need future surgery to fix this.
I also need the barbie butt surgery I’m very nervous about.
I forgot to say, they sent off what was left of my colon to find out what caused the perforation and it came back as between ulcerative colitis and unknown but they’ve gone with uc. I had no idea I had it and was only unwell for 5 weeks before.
So here I am nearly 11 months since my surgery and I am feeling a bit all over the place right now. I have quite a few questions.
I’m feeling highly emotional.
1. Does anyone have ptsd from a particular traumatic hospital stay like mine? How do you cope with it? I already had ptsd from a trauma event years prior. I’ve been told I can do trauma therapy once I finish a programme I was in prior to surgery but that will take over a year.
2. Has anyone had a retracted stoma that surgery has fixed?
3. How do you deal with the stomaversary?
4. For the last few months I’ve had this stabbing pain to the right of my stoma. I’m under 2 surgeons at different hospitals and have contacted the one doing ongoing investigations. He left me a voicemail back in September saying it’s a bulge in the muscle, stoma nurse says that means a hernia. I have no buldge and have not been examined.
The last few days the pain has been really bad with burning at the same time, I have no sore skin where it is. Yesterday I even thought about going to a&e because the pain was so bad but have a fear of hospitals now. Anyone know what this is or what you can do for it?
5. Anyone been left with nerve damage/foot drop, if so did it improve?
Any other advice or support would be greatly appreciated. Thank you so much for reading!