It’s been suggested that I name my stoma… I mentioned this on an earlier post before the whole brouhaha started and I think it got lost in the mix…
Suggestions please?!
I’d like to thank James for –
Stoma Simpson
My mum suggested –
Shitty Shitty Bang Bang
Joanne for –
Dr Poo
Lisa for –
Sheila
Any other ideas?!
X
I mentioned to Timm that I had quite bad tummy aches and bloating and he said that Peppermint Tea was supposed to help. Then he said he’d mention it to my friend Sally who was visiting as she’d asked if there was anything I needed…
I love that she took it to the extreme….
Peppermint tea, mint tea, mint choc thins, mint party bag, spearmint a and mint nail varnish!!!
My kind of present!
I also got the joy of a proper belly giggle when she made me laugh saying I need to make my own Take a Break style hospital headline to compete with the ones in the obligatory crap mags!
Really cheered me up! Thanks Sal!!! Xxx
Xxx
I thought I’d do a quick update on yesterday’s debacle but before I do I just want to reiterate that apart from this problem with three staff members (one in particular) the other doctors, nurses and support staff at both Hallamshire and Northern General hospitals have been outstanding.
They have shown warmth, caring and have gone above and beyond in helping and caring for me.
I appreciate them very very much and will not be letting the actions of the very few mar my experience with many others.
Last night was awful. After the problems with the nurse I was left feeling alone and upset. When I needed help with my bag in the night I was told there was only that one nurse who could help me so was left with someone who seemed to dislike me quite a lot in care of my stoma which was awful.
My pain didn’t decrease at all, my sleeping tablets didn’t work and I was in agony.
The steroids have made me suffer with the insomnia again and despite the sleeping tablets I could not sleep. The pain was just unbearable – I told the nurses overnight that my pain levels were so high. They ask you for a score of 1-3 – I told them it was as high a 3 as I’d ever had.
So between the lack if sleep, the steroids, the insomnia, the stress of the evening I was not a happy bunny. I had the ‘laughing’ nurse and the evening nurse to see to me. They gave me codiene paracetamol and orimorph.
I felt really uncomfortable in their care through the night. They did nothing to make me feel any better and by 630am I was in agony. I asked for more pain relief and was told I’d had everything I could and that I’d have to wait till the dr came later in the morning.
I lay crying in pain till the next nurse came on. She took one look at me and said ‘right lets get you sorted!’ She checked my chart and immediately gave me orimorph that helped within 20 minutes!
Around 9am Timm arrived. I don’t think I’ve ever seen him so angry… He’d spent the night getting every piece of information to do with complaining about the NHS, protocols, phone numbers, etc etc and was ready to ensure I got care! My hero!!!
Once here Timm looked through my chart and said that as I’d been telling them through the night I was at a 3 for pain – they had been putting 1s and 2s.
The day nurse also said that I had only been on half doses of all my meds and that I could have 10mls of orimorph every two hours and 2 tablets of codiene every 4 hours.
I have no idea why both nurses would not give me the pain relief that I needed and that had been prescribed to me rather than leaving me wide awake in pain all night.
So today’s care has been much much better. My nurse was lovely and kind and has helped me get back on top of my pain. She explained all my meds and was fantastic.
She got a sister to come and see me who I have explained all my concerns and complaints and is helping me move forward with them. Timm and I are also seeing the hospital manager on Monday and have our routes sorted with how to complain.
We are complaining because I need to know that this sort of thing is not acceptable.
I need to know that if a nurse acts like this to me, that she can’t get away with mistreating an old lady without a voice or a person who doesn’t have the support to shout about it.
Huge love to all the amazing comments I’ve had today and yesterday. I’m blown away by the 2000 views of my last post!!! 2000!!!
Thank you for caring and thank you for supporting me in standing up for myself and for other patients!!!
It matters. We matter. We have a voice and we will use them.
Love Sam xxxx
I’m sorry to have to blog such a negative piece today but I need to be talking about the negatives as well as the positives. As I have said many times so far, my care experience has been amazing. The nursing and care support have been just fantastic and I am a huge supporter of the NHS and nurses. My best friend is a kick ass nurse and I think they do a very difficult job in tough circumstances.
So it pains me to write about my experience over the last day, it really does.
Yesterday I had a bad time with my bag, I had a lot of leaking and my stoma was leaking into my wound. This was making me sore, embarrassed, stressed out and upset. The nurses helped me to clean up a few times, they dealt with the accidents with kindness and helped me to maintain some dignity whilst I lay being cleaned up. It was very tough and left me feeling humiliated and weepy. But we got through it.
This morning I woke to find my bag had leaked again and as I looked at my wound I saw the whole thing was swimming in the output from my stoma (poo to me and you!) I pressed my buzzer and a nurse came over, she said she was doing her tablets round and would be over later. I left it a while and then asked again, she quite huffily said she would do it later. I explained that my skin was sore and I was freaking out about infection from the poo being inside my staples!! So could I do it myself. After an hour she came back and said ‘are you expecting me to do this?’ I said yes and she said ‘fine’ I said I could try to do it myself but wasn’t sure where to start. She then cleaned my wound and bag in silence. No comment and no eye contact. I was mortified. I felt like she was a bit disgusted and didn’t want to help me. I felt like sinking into the bed and disappearing.
From then on today I have asked a few times for support. I’ve said that my bag was leaking, I’ve said that I was nervous and didn’t know what up do. I had very briefly seen a stoma nurse the morning before who had fitted one bag but then I’d leaked so many times snc tried so many different things that I was confused.
I asked if I should try to empty the bag in the loo and the nurse said ‘yes, obviously’ – the whole day felt difficult. I was trying to ask for support but not getting it. I had no idea if I was doing it the right way or not and the nurse seemed not to care.
Other nurses I’d seen so far had been open and kind and just asked ‘how can I support you?’ ‘Would you like help with this’ etc. this nurse just looked mad. She looked and sounded like she didn’t care and that scared me into not wanting to ask any more of her.
She was quite rude and abrubt to visitors and just came across in a very uncaring manner.
This afternoon I asked for some water. I’m trying to increase my water input to help with a number of things mainly blood pressure and stoma care. I asked 3 staff for an hour and a half for water.
I asked if I could get it myself and was told no, I’m not allowed in the kitchen. I know they were busy but I was parched and being postop I really needed to keep my fluid levels up.
My stoma nurse came at 530 and was shocked to hear that I had been struggling. She had not been told that I’d leaked 6 times the day before and was distressed. She said that my output needed more fluid and I needed to drink more. I pointed out that I’d been asking for water for an hour and a half. The student nurse then took my blood pressure which was again low an said I needed to drink more.
No shit Sherlock!!!
Anyway I was looking forward to todays nurse ending her shift and hoping that the evening staff would be of more support.
So this evening towards to end of visiting I found my bag was leaking. I had to ask friends to leave and I was quite upset. I found the evening nurse and said ‘my bag is leaking, maybe I could have a shower? Could you please help me and get a towel. She got a towel an just pointed to a cubicle. I waited for her to come but she didn’t.
If I’m honest I thought she would come and help me. I just had my epidural out today and so I’m still unsteady on my feet and in a lot of pain. When she didn’t even come in, I was too embarrassed to ask her. Of course I’d rather not have a person helping me wash my fanny in the shower! But realistically I needed the help.
I felt very exposed and childlike. I couldn’t lock the door and there were blokes sat outside. The nurse was talking to another staff and kind of shrugged as I pulled at the door.
I dragged the disabled chair into the shower and managed to half sit, half stand in the shower. I struggled to remove my surgical stockings and knocked my stomach.
I sat crying in the shower, not know whether I was supposed to remove the bag or not. Not knowing if I should use soap near my stoma or not. I was in a lot of pain and wished I’d not bothered trying to get clean.
I managed to get somewhat clean and then realised if need to do my first ever bag change. Wet. Alone. In pain. And sat in a disabled shower with a door that didn’t lock. Score!!! Well done me!!!
As I shuffled back to bed a lady from the ward said ‘you need more support love, I can’t believe she didn’t help you in the shower. Can I help?’
I got into bed and then looked down an realised my bag was once again leaking A lot.
I pressed my buzzer and a support worker came, I told her my bag was leaking and i was stressed – I didn’t know what to do. She brought a bowl of water, plonked if down and said ‘is that what they do?’ I said I’d not been getting any support but that I did need help. She just shut the curtains and walked off.
I thought I’d better just give it another go. It’s tough, there’s a lot to learn and I was promised to get stoma education and that the nurses would help me every step of the way over the weekend. This just wasn’t happening
The support worker came back and said ‘you done? Ill open the curtains.’ I replied somewhat snarkily that no I wasn’t done as I had no bloody idea what I was doing but that if they wouldn’t help me that they could at least leave the curtains for privacy. ‘Suit yourself’ she shouted back.
That’s the point I texted Hannah, my awesome nurse friend. I’m a strong independent head strong woman but right now I’m a wilted, broken woman in pain. I’m someone who wants to be able to do things for herself but currently needs help. I needed to speak to Hannah as I sat crying looking at this bloody bag wondering whether my wound was I infected.
Hannah quite rightly told me I needed to speak to someone and to demand some care.
I made a last dash for the loo and when I came out a lady from the ward said ‘Sam I’m worried for you love, why aren’t they helping you? I have buzzed them, this is ridiculous!!!’
I saw the nurse who’d not helped me to the shower and it all built up and fell out!!!
‘I had the whole of my large bowel removed three days ago, I’m in agony, I’m frightened and I am not getting any support from the nurses today. This isn’t fair. I’m in a state and I need some support!’
She replied and said ‘well ask then, it’s not just me’
I looked up quite surprised And said ‘I’m struggling and I haven’t got good enough care from you or the other nurses today.’ I started crying and she said ‘well if you want something just ask!’
She was really defensive and aggressive and I couldn’t believe it! I started crying and said ‘I really hope you are never in a situation where you are in pain, frightened and need help and you’re surrounded by people who don’t care’
She shouted ‘why are you wishing pain on me?!’ I replied that I wasn’t, that I was hoping she would never struggle the way I had. She repeated that I was wishing evil on her…. *sighhhh*
Another patient said ‘The lady’s upset and saying that she hopes you won’t ever be in her situation as we’ve all seen her struggle today and no one helped her!
She was told to be quiet and not to did us other patients.
Then she walked off leaving my curtains drawn and myself crying a lot inside my bed.
I called Timm as I was getting into a right state, I couldn’t believe how things were going and just felt frightened and alone. I was crying hard to Timm and it was obvious you could hear me around the ward. I looked up and the nurse was stood outside my curtain just doing her meds round. I said ‘timm the nurse is standing here doing nothing, I’m in pain, I’m frightened and she’s just stood here.
She did not try to improve the situation, she didn’t try to make me feel better or to pass it on to a superior. She just carried on.
Eventually She said ‘what do you want me to do? You’re just complaining and I’m saying ill do whatever you want.’
I said I wanted to speak to whoever was in charge. The nurse laughed in my face.
I was desperately sad, crying and in a state and she laughed.
Finally the ward manager came over. She asked what was going on. To be honest I’m not sure what took her so long. I tried to explain how unhappy I was at the lack of care and support given all day. I mentioned the shower and the Nurse stepped back I shouting ‘you only asked me for a towel, how’d I meant to know you wanted help?!’ I’d think it was common sense as a nurse to at least offer wouldn’t you?
I said she’d not offered any help and she laughed. Again. I almost lost my head. I can’t believe that when being confronted by a desperately unhappy patient who is three days out of major surgery that anyone would LAUGH I’m their face.
Unforgivable in my opinion.
So I spoke to the ward manager and hopefully pulled in my crazy. I know I wasn’t at my most rational but I’m in pain, I’m distressed and I feel let down so in the circumstances I think I did ok!!!
She has apologised and said that communication needs to be clearer. I think she is suggesting that I need to clearly say the words ‘I need you to get me a care kit and clean up my waste as well as bathing my wound’ – I tend to think that other nurses don’t need it spelling out so clear and asking for help as my bag is leaking should suffice. But perhaps these are particular nurses who suffer from a lack of empathy and common sense….
All I can do is move forward from here, ill be complaining about certain members of staff and making sure the hospital know what has happened.
It’s not just me, other patients have commented that we have had the most awful day of staff being rude, unhelpful and not caring.
I have had another leak tonight and pressed the buzzer. The nurse came over and I told her my bag was leaking into my wound. I asked if there was anyone else who could help me. She said no. So I have had to let her clean me.
I just want you to imagine how it feels for a grown woman to ask another person to help clean faeces off them. Now think how it feels knowing that you’d asked before and that person had already not wanted to help. Now imagine that being the only person who is available to help you.
Feel good?
Nah, me neither.
Well let’s get this blog post out into the ether, eh?! It’s not to slag off nurses or to be nasty. It’s about real experiences of patients of the NHS.
Im laid here raw, exposed and totally frail to these things happening to me and experiences like today have made the whole thing so so much harder.
I really hope tomorrow will be a more positive day.
Thank you for reading
Sam xxxx
Brought to you by the letters T.I.M & M
So Day 2 after surgery and Mrs C is well on the road to recovery.
The surgery all went as planned and after a short stint in the HDU Sam was back on the ward.
Today she’s in good spirits but is having a few bag issues… because the stoma is quite close to the operation wound and is quite small too the seal on the bags are not quite working as they should and some leakage is occurring… This causes a bit of discomfort on her skin as it’s got stomach acid in and it could infect the wound so the nurses (who are being fantastic and looking after Sam so well) are having to change and clean a lot. They know what to do to stop in happening but the staples… yes staples, need to be removed first.
Sam’s coping well but it’s a lot to take on board and get used to and there are ups and downs. We’ve had a few teary phone calls and visits but she’s doing great. She’s a fighter is the wife and nothing will get in the way of a full and speedy recovery.
I have to say it’s a bit weird… I’m amazed by it, how they can make a hold in someone and leave something that should be inside… outside, we’ve (I) had loads of daft and important questions like will she still trump? and what happens to the bumole? will the trumps smell? (Mainly me asking stupid questions). There’s a lot for us to learn and get used to and we will together.
It’s important for me to know as much as I can about it all so I can support Mrs C with all of this. I know she worries I’ll be put off by all of it or be grossed out but it’s quite the opposite, I feel like we are getting closer and all I want is to get her well and home with us again. I guess going through something like this will either bring you closer or tear you apart and I’m glad it’s the former.
The kids are doing ok… they miss mum… we have a few tears every now and again that require big hugs and cuddles and we have odd realisations too, the other day we realised that Sam will not have a poo (In the conventional sense) again now for around a year… how weird (The kids are happy about this as they said they won’t have to queue for the bog, I think they are forgetting that Dad is just as bad as mum ever was and smells much worse)
We’ve also had so much support from friends and family I can’t tell you how grateful we are for all of you… all the kind words, the offers of help, the baby sitting, the hugs… everything from every single one of you is massively appreciated.
Right I’m done… I’m sure Mrs C will be back on it once she can get near a decent internet signal.
Much love
Timm (Mr C)
Helloooooo! Well today is two days post op – it’s been a tough couple of days and I’m struggling a little but thought Id attempt a post.
Tuesday was op day, thanks to Mr C for updating the blog. I went down to theatre around 2pm and after getting my sexy surgical stockings on and going through consent forms etc, the anaesthetists put in an epidural for post op pain relief. She was fab and from Barnsley and sounded *just* like my sister in law Nancy so it was so comforting having her with me! We were talking whilst I got sorted and so as I drifted off under the general anaesthetic, she told me to imagine laying on a beach in Australia next to my sister! What fab personal and kind care!!!
I awoke in recovery a few hours later to my first question ‘Is Caroline here?’ She wasn’t but whilst I was out I had overheard a nurse who sounded just like her discussing the programme Doc Martin… I have to admit that I was a little disgruntled that she was talking about Martin Clunes over talking to me!! Haha!!! Poor Caroline!!!
I had a little pain when I woke, the nurses soon got it under control by altering my epidural and then Timm was there. It was amazing to see his face smiling down at me, he held my hands and made everything feel better.
Around this time there was some concern over my lactate levels, (genuinely described as ‘deranged’ LOVE it) they were on the high side and so needed to keep me in recovery for a whole longer, but Timm could stay and so all was fine. A couple of hours later the levels were still rising and so the decision was made to move me to the High Dependency Unit. Timm went home as he needed to get back to the kids and the staff needed to do their job.
I was moved to HDU which was a little scary and movie like – they explained things really well and though I was frightened, they kept me informed and I felt safe and comfortable. I had a nurse with me all the time and the care I received was just outstanding. I was covered in monitors, tubes and wires including an arterial line that was inserted into my wrist and SEWN into place!! Eek!!! But they did give me a local and so I had no pain.
Wednesday saw my levels improve and so around 2pm was moved back to my ward to recover. My potassium levels were off and so I still had to keep an IV with potassium in it. I had my epidural for pain relief that I have a button to add extra relief if needed and a catheter in as I couldn’t get up and down to the loo.
I felt shattered but on the whole, ok!! The nurses are fantastic here, so warm, caring, professional yet open. They make a difficult time so much easier, it’s embarrassing to be cared for, washed and have your toilet needs to be sorted by another person but they’re so relaxed and laid back about it that you feel at ease. It’s an amazing skill to have and I salute our nurses!!
Turns out IV potassium BURNS like its on fire!!!! Really really hurty arm after this one so trying the oral version (tastes awful but not painful at least!!)
Wednesday also saw my meds being dropped! Hooray!!! The 8 Pentasa I have been taking a day since June have been stopped! I know this may not seem like a big deal but it really gets to me having to take so many tablets every day so it felt like a real landmark. My IV steroids have been replaced by tablets that we have to taper down from now over the next few weeks.
To be honest, I think I was still on a bit of a high on Wednesday – Timm and Caroline visited me in the evening and I think they were surprised at how well I was. I mean, I felt exhausted and drained but emotionally I felt relief, happiness and quite elated that the ‘hard bit’ was over. I didn’t sleep particularly well but on the whole I felt in a good place.
So it came as a bit of a shock that today (Thursday) kind of hit me like a thunderstorm. It’s been a bit of a roller coaster today. It’s been kind of tough – there’s a couple of small problems with my stoma – it’s quite small and flat and it’s close to my wound. This means that the stoma itself doesn’t have enough of a ‘spout’ to sit in my ileostomy bag and is leaking.
This afternoon it leaked for the first time. My mum and sister were visiting and I looked down to see a lot of waste all over my stomach. I was devastated. I think it was shock more than anything and I just burst into tears. The nurses were AWESOME they came and cleaned me up, wiped away my tears and offered me comfort, support and kindness.
I was embarrassed and the reality of what was happening hit me like a ton of bricks. I felt like a baby, I felt dirty amd humiliated.
I had a big cry. (A snotty Chinese baby cry!!!!)
Then I manned up and got it sorted! The nurses cleaned me and discussed why it was leaking. They told me to trust them and let them care for me. I did something I’m probably not great at doing and let go of control.
Unfortunately I have leaked quite a few times since. The lay of my wounds mean that my stoma is leaking INTO my wound so I’m feeling very sore and I’m having to be cleaned a lot.
It’s just going to be a bit of a learning curve, trying different bags and seeing what works for me. They say it will be much easier once all the swelling goes down and my wound heals.
The wound!!! Scars are cool, right?!
Timm and the kids came to see me tonight which was fab but a little overwhelming. It was great to see them but difficult as I don’t want them to see me upset or in pain. Once they’d left I had a visit from my two oldest friends Tania and Hannah and had a bit of a weep. I just felt really emotional and ragged. I had to let go and it was good to have my old dear friends there to make it better.
What I’m finding from this situation is that my struggle is in being out of control and I need to learn to accept this and be ok that sometimes you can’t paint a smile over it. Sometimes it’s ok to say ‘I’m struggling’ because you know what? It feels good to have people around you who love you and who say ‘that’s ok, let me help’
So ill leave you with a couple of things, firstly is the shot of my ileostomy pouch…
And secondly, a nurse told me I should name my stoma!!!
Any ideas?
Sam xxxx
Too tired to blog but I’m back on the ward. Spent the night in HDU but all ok now.
Very sleepy but pain under control with epidural.
Will try to update soon
Oh and dude… I have no belly button any more!!!
Sam xxx
It’s 11pm and I’m just home after visiting Mrs C in the theatre recovery ward at the northern general.
The op all went to plan and was successful and they had a good look whilst they were in there (The nurses words not mine) and everything looks good, no infection anywhere else.
I can’t begin to explain the relief I felt when I saw her and she opened her eyes and looked ok, she has even managed a smile for a couple of pics (Her choice not the photographer in me forcing her)
They took her from the ward at 2pm this afternoon and at 3.50pm she went into surgery. The op took 2 hours and 20 minutes and now Mrs C has no large intestine, feels weird every time I think about it, that bit of her is gone… but I have to say we are quite happy it has gone because this is the beginning to the end of the disease that has ruled Sam’s life for 10 years.
She’s left with a couple of scars, one large-ish one up her tum and one where her stoma is, I’m sure we’ll have pics to come but for now you have to google if you want to see one.
She is on a patient fed epidural which is an injection into her spine so the pain killers can be administered as she needs them, she was in a little pain when I arrived but the nurses sorted that out quick smart (I have to say on a side note since we moved from Rotherham Hospital the levee; of care has been brilliant, the Staff at both the Hallamshire and the Northern General have been fantastic.
Tonight she will be kept in the High Dependancy Unit (HUD) for observation, there is some level in her blood that is still high (Sorry I don’t have the exact detail) and until that’s calmed down they want to keep a close eye on her.
I’m sure that she’ll be back on it tomorrow so you won’t have to suffer my awful ramblings…
I’ll leave you with a few pics from the recovery ward… oh and a collage that ellie did… (If you’re feeling sad mum just look at the kittens and remember me…) Too cute that girl
Still rollin’ with no colon!!!
After last nights epic transfer stress (told me to pack up at 6.45 and I finally got into bed at the other side at 1.30am!!) I’m finally in the Northern General. I had a terrible nights sleep, my fears and anxieties just got the better of me and I spent a fair chunk of the night in a state of panic.
This morning the surgeon has been to see me and has made the final confirmation that surgery is definitely the right decision and will be going ahead today! I don’t have a time yet but I’m on nil by mouth and they’re attaching IV fluids and the like to me so I’m thinking it won’t be too long.
So how do I feel?
It’s odd, at times I feel total abject terror. The thought of the actual surgery is such a frightening thought – I’m scared of the whole cutting and removing and all… I’m frightened of pain and if there’s difficulties. I’m frightened of this feeling of being alone. I have the best husband, kids, family and friends and I’m so well supported. I’m overwhelmed by the kindness I have been shown. But in these hours of waiting and those long, dark evening times I’m so very alone with my thoughts.
But on the other hand I know this is the right thing to do. It’s the start of a journey that should end in me being well. I’m excited to think of a life that won’t include Ulcerative Colitis. To think Ill be able to plan in advance without the fear that Ill be crippled by a flare up.
I’ve said for years that I really just want to be a ‘normal’ person without having to take a host of meds to function. Some people who know me may say Ill never be normal but hey!!!
So this morning I’m going to sit, try to relax and think about the things in my life that make me blessed. My husband. My kids Charlie, Ellie and especially Thom! My family. My friends.
The fact that we live in a country that means my care is free! I read American IBD blogs and I’m shocked at the stress they endure on top of their illness with money and insurance.
I know it’s a terrible clique but I do feel that today is the first day of a new life for myself and my family.
I’m on the emergency list which means the surgery is imminent but if another priority comes in ahead of me, my surgery will be dropped back.
I’m quite weepy still today, I wish I could say I’ve got my big girl pants on and a brave face but more often than not its a slightly panicked, puffy moon face with red eyes!!! I swear in my head when I weep I look like this…
In reality it’s more like this…
Thank you for all the folk reading the blog, I’m blown away. Yesterday over 400 of you were reading and the numbers are going up all the time. It’s amazing and I’m so honoured to have you share my journey with me. The whole reason for this place is to break the poo taboo and to get people talking about IBD, Ulcerative Colitis and Crohns – I just hope my ramblings can help others. The other reason is that getting it all down is very cathartic for me. I know some people might think I share a little too much but I really think if I’m going to do this I need to do it openly and honestly.
So Ill see you all on the flip side! Still rollin’ with no colon!!!
Much love
Sam xxxx