The words ‘bowel care’ conjure up the thought of a Dr asking you lots of questions and generally ‘caring’ about how often you have a bowel movement, and whether it is solid or not! WRONG. With 4 nurses carefully rolling me on my side, one lucky nurse got to poke an enema in the form of 2 pessaries up my back passage to see if it would trigger a bowel movement. Each time they all came back to check me an hour later… I felt like a disappointment to them as nothing was happening and I had to endure a rectal examination with a ‘sweep’ of my bowel with a nurses’ finger rudely inserted high up my anus to see if anything was sitting up there. It wasn’t. As I said in my previous post I held on to my bowels for nearly 3 weeks (unintentionally)! I started to feel an increasing sense of panic as the days passed by, imagining my stomach would eventually burst ‘alien’ style and explode my poop all around the entire ward. I would check in with Martin daily on poop updates as I was desperate to give him the news that something had finally happened.
The nurses continued to dose me with laxatives and enemas but the top end of the bowel was impacted and nothing seemed to be moving down. This was due to my cocktail of pain meds causing constipation and my body lying horizontal with no movement.
The prequel to the main show was a very small amount passed after a ‘manual evacuation’ which is more unpleasant than most procedures I’ve experienced as a woman. This was nothing compared to what was coming….
When the flood gates finally opened and the back log of 3 weeks of poo started to make its exit, it reminded me of a landslide where a slurry of unstoppable mud would cascade down a mountainside!
I had sensation ‘down there’ which I kept being told by Martin was a ‘good thing’ but it really didn’t feel like it to me! Each time I felt it all gushing out, it literally felt like it was squishing down to my knees and would soon be coming out the end of my bed for all to see … do bear in mind that lying flat on your back on a nappy type pad in a bed with a thin white sheet over you is not the best position to pass a bowel movement, so this is quite an exaggeration as I don’t recall the nurses washing my feet! I was mortally embarrassed ringing my buzzer and asking the nurse to round up the troops to roll me for a ‘change’. Therein lies one of my problems: communicating to the nurses I need a change or ‘clean up’ as I would call it. I couldn’t bring myself to say ‘I’ve pooed myself’ or ‘my nappy needs changing’ so I would invariably say ‘I need a clean please’ to which some stupid nurses (usually bank staff) would think I meant I wanted to wash my face or clean my teeth and not take me seriously! I would be left for quite some time stewing in my own poo, resigning myself to eventually point out on her 2nd or 3rd return ‘I’ve had a shit and need cleaning up’! For God’s sake surely I shouldn’t have to spell it out so everyone on the ward would know?! The experienced nurses on the other hand knew just by the expression on my face what was required!
I would find it so hard not to cry, as the nurses (male and female) would roll me over to start cleaning me. I would feel like a helpless baby having its bum changed, but some nurses (the better ones) would talk to me, distract me and generally make me feel like it was no big deal, which it wasn’t for them! Towards the end of my stay at the N&N with certain nurses we would even laugh and sing my favourite rock songs whilst I was being cleaned up.
I would always insist before a ‘clean up’ that a nurse had to spray some of my Tropic ‘poo spray’ in the air to save the whole ward from any smells and to generally mask my total embarrassment. For 3 long days this slurry continued literally every 2 hours or up to the point I would go to sleep at night and finally get some respite from it. I’m sure I lost over a stone in those 3 days.
The good news when it was over, was that my tummy had returned to its normal size, the bad news was due to my compromising position I would continue to have daily ‘bowel care’ and laxatives plus a putrid drink called ‘laxido’…how long for I did not know, not even my spinal nurse could give me the answer. The original prognosis had been I would be doubly incontinent and paralysed from the waist down. Well I had leg movements which was promising and so surely my bowels were going to return to normal?
I had one moment of a scary reality check where I realised that I couldn’t handle the possibility of going home to my husband an incomplete wife (ironic use of the word being my injury is ‘incomplete spinal cord damage’ thankfully). What I mean is, the thought that I may have a catheter permanently in situ, or bowel issues meaning a colostomy bag OR daily bowel care to be continued at home as well as being disabled, which would probably mean we would never continue with things ‘normal’ married couples do with regards intimacy! This led me to feelings of fear and great sadness and I would listen to my classical tracks through my pink headphones to try and relax and breathe my way out of the despair and find a different more positive way to think.
I am known as the ‘google’ queen in our household and having read studies on visualisation and it’s scientifically proven results, in hand with conversations with a friend of mine who visited to give me some ‘healing’ I decided to focus on some self-healing and visualisation techniques. I started to visualise minions (yes from Despicable Me) in my bowel. Hundreds of them at different points from my stomach down the various sections of my bowel through to rectum, anus and finally sphincter. You may by now be thinking I am totally losing the plot but I believe to this day that this DID make a difference. I would rub my stomach and talk to them (not out loud obviously!) and they were all set at different crossroads of the tract, a bit like various railway crossings with gates and lights…. being told to hold back or release when ready for the train to pass through! There were also minions in their gym clothes relearning ‘peristalsis’ the art of pushing everything down from the top end of the stomach for a bowel movement. A job currently being done by laxatives. They were working out and strengthening all the muscle tone as well!
As if this doesn’t all sound crazy enough…. I employed ‘lady’ minions (their wives) into my bladder later on to sort out my all ‘wee’ issues and ensure that I got full function back after catheter removal. To visualise, I made up an image of female minions in dresses with nurses hats on … not even knowing if there is such a thing as Lady minions as I never saw the film! Well blow me down, not only do they exist but I found this picture which perfectly depicts my image. (I told you I’m the google queen!)
Believe me …. When you have the thought of double incontinence hanging over you …. It really does take desperate measures!
On a near daily basis my bowels caused me the most distress… I hated the bowel care, especially when done by a male member of staff. It was being done every ‘other’ day and I would pray it was a nice nurse on those days who had a kind bedside manner and lots of patience. If you were lucky, it was done first thing in the morning and I would ask everyone at the scene to exit ASAP and leave me with my curtain closed for privacy when my violent stomach contractions would start. The tears would pour down my face as I listened to Beethoven, and visualised the day I would be at home again sitting on my own toilet in my ensuite looking out the window across the beautiful fields towards Sheringham Park. It was unbelievably horrible passing a movement but even worse was being checked and cleaned. On one occasion, the nurse had his finger up my rectum saying ‘there is still some more up there… give me a little push’. I burst into tears with mortal embarrassment and horror. All the nurses holding me on my side would then join in coaxing me to give a ‘little push’. WELL all I can say is….. when I gave birth to my first daughter some 29 years ago, I had an epidural which numbed me from the waist down and when it came to trying to push her out in the second stage of labour I couldn’t feel a thing, and the nurse said to me ‘just bear down and push… imagine you are having a poo’. Well here I was now in reverse actually being asked to bear down and push out a poo. They were kidding right? It was too much for me and I would literally shout “enough” and being I was rolled on my side with no ability to move or do anything to help myself I would cry “get your finger OUT of my bum and STOP right now!” I’m sure the patients either side of me heard all of this outside the curtain. The nurse would have to obey my wishes and the remaining nurses would reassure me and comfort me as they rolled me back. I would have a blub for 10 minutes and then get back to playing scrabble on my phone, doing a crossword, maybe promoting my Tropic business online, before my next set of obs or mealtime.
I became fearful of having visitors. Sometimes due to lack of staff or on a Sunday my bowel care would not get done until lunchtime and visiting hours were from 1.30pm onwards, way too close for comfort! Also, I started to find that I had a constant overwhelming feeling of needing to ‘go’ but 9 times out of 10 with my sweating and pushing and feeling the nerves in my rectum or anus twinging and seemingly pass a large bowel movement, I would be told when they cleaned me that I had only passed a ‘malteser’. (I apologise if this puts you off maltesers too!). The thought of passing even a malteser whilst having a visitor sitting next to me passing the time of day was just too much for me to bear. So visits would often be cut short by me making excuses or on one occasion when a dear friend showed up for a visit I was really distressed and told her I was really sorry but she would just have to turn right round and leave … ‘immediately’. Only my dear husband knew the fearful look in my eye which signalled I needed to go and he would quickly pull the curtain around me and give me 5-10 mins of privacy often for it to be a ‘false alarm’.
ALL TIME LOW:
Now let’s get to the shittiest and lowest experience of all and then we can hopefully move on to some more light-hearted and positive moments of my journey in subsequent blogs. I believe it was mid-August and around Cromer Carnival day which was also when my hubby was at his busiest in our café.
The morning started off well with me doing my exercises at 6am before the morning shift change of nurses. This prompted a 6.30 am successful bowel movement by myself (hooray I really was becoming positive I was going to regain my bowels and not have a colostomy bag) but it was also a relief because it would mean I wouldn’t need bowel care today. Smug victory for me! I rang the infamous buzzer for a nurse and after 20 minutes she finally came to say they were doing a ‘handover’ and I would have to wait.
I started ringing again at 7.20 and an agency nurse came. When I explained I was waiting to be cleaned she looked at me and said she had a whole ward patients who had ‘more important’ needs which had to be tended to. “Oh, so I have to sit in my own poo then?” I asked quite innocently. ‘Oh!’ She replied, the penny dropped! She had thought I wanted a bed bath. She went off to find some other nurses to help with rolling me … and never came back. Another hour later I ring again and a male nurse pops his head round my curtain and I’m nearly in tears saying “I’ve been waiting 2 hours to be cleaned’ …… He interrupts me saying “we are just in the middle of doing red trays… you will have to wait”. Red trays are for meals handed out to patients who need assistance. I am a red tray being I am not yet sitting up more than 10 -20 degrees. I’m now feeling really upset and say to him “well don’t bring me my red tray, I don’t want to sit up and eat my breakfast in my own shit”. Emphasis on the last word here, just in case he also may have translated ‘being cleaned’ as getting my face washed! He shook his head at me, with full understanding and left me lying there.
When someone called through my closed curtain and asked me what I wanted for breakfast I was now crying and replied saying that until I was changed I didn’t want anything. Still nothing. Now Martin had told me many a time to stand up for myself and complain but you feel very vulnerable and lose any sense of control when stuck horizontal in a hospital bed, I didn’t want to make a fuss because I felt the nurse would maybe then not be nice to me or not tend to my needs as well such as getting my pain relief.
I pressed my buzzer and when the agency nurse came I ‘firmly’ asked to see the ward sister….half an hour later when she arrived I burst into tears and explained I’d been waiting 3 hours to be cleaned up. She couldn’t apologise enough, got me 4 nurses to roll and clean me up immediately and went off to find me something to eat to replace my missed breakfast.
I felt pretty miserable now trying to face the day, and was also on catheter training which involves reaching down and flicking a little valve open and shut on the tube which lets your pee out. The purpose being it trains your bladder to get stronger. My valve release didn’t seem to fit properly and later that day as I reached down to release it …it came apart (again) and all the stored urine flowed out into my bed onto all the sheets, just as a friend arrived to hug me. (She knows who she is!!) I burst into tears and told her to stand back as I was lying in my own piss and needed to have my bed changed …she offered to leave but I insisted she stayed and I rang my bell again.
So just when you think you’ve had as much shit and piss as you can bear for one day…. the very worse happened. I was lying listening to some music later that afternoon when the urge for a poo came over me and I called to the agency nurse to come and pull my curtain around me. My neighbouring patient complained about having my curtain pulled on her side as it made her too hot and just a few minutes later the same nurse started to yank my curtains open saying ‘ I need to see you at all times’. I was horrified… “what? Even mid bowel movement?” I pleaded with her. “Yes” she snapped and there I was open to the entire ward feeling like I was centre stage with my knickers round my ankles! To be fair the ward patients weren’t paying me any attention but that’s not how I felt at the time. I pulled my sheet up over my head and cried. The indignity was too humiliating and poor Martin had a very distressed message from me. He was outraged and phoned in to complain and on speaking to the ward sister, demanded to know why patients who use a commode or bed pan had the privilege of a curtain being drawn around them whilst I didn’t.
I was so distressed this day that I asked for a tranquiliser, I felt degraded, vulnerable, abused, invisible, like I just couldn’t face another day of this hell. No amount of pain relief or ‘morphine’ numbed this psychological pain. Thankfully a really lovely ward sister came to see me after Martin’s complaint and could not apologise enough. I was reassured the agency had been called and a formal complaint made and that her behaviour was bang out of order and my privacy should have been respected. I would never have to be looked after by that particular agency nurse again. I was also going to be moved to a new room to a bed by a window with a view which really cheered me up. The sister sat holding my hand and made sure I was happy before she left. Nurses like her I remember for all the right reasons!
My day ended with a message from my. wonderful hubby saying “stick with me kid, I’ve got your back!’ He was my voice, my advocate, my rock. xx