How often do you hear from doctors or the like that the pain you are experiencing is probably adhesion’s/scar tissue? There is a high chance that a lot of pain we experience is from scar tissue but I have grown accustomed to that pain and definitely can tell when something else is afoot for instance when I get pain high up and my output slows down when there has been no change to my diet! This happened last week which you may have seen on my social media I went to hospital for; well this post is all about that admission.
So it all started Monday afternoon and I was just sat watching TV whilst Button napped and I doubled over with an intense pain under my ribs on the left hand side of my abdomen. I have never had pain there before and then my output was pretty much non existent but I was passing gas; I have had partials before and generally know what to steer clear of food wise and this to me didn’t seem like a partial blockage. I waited till about 7pm when the kids had gone to bed and I rang 111 who sent an ambulance, now I was just expecting to speak to a doctor so that was a bit of a shock; apparently not to 00Steve though!
The paramedic didn’t take long as she was not far away; she did my observations and we chatted about how this was different for me from my “normal” – she decided that if I didn’t mind jumping into the back of the ambulance car she would take me to the hospital. Now in hindsight I should have gone to the Friarage; it is where my colorectal team is and the staff are accustomed to me. But James Cook University Hospital is closer to me and that is where we went. She admitted me into A&E which seemed busy for a Monday night but that maybe completely normal for Middlesbrough. I expected a wait and felt surprised when I was seen by the triage nurses within the hour. Back to the waiting room with no pain relief offered and the pain was pretty high by this point I am just good at playing it cool!
Midnight I was called into the main department by a nurse practitioner that I recognised being a couple of years older than me at school; Marie – she was lovely. I didn’t feel like I was wasting her time and she did some basic checks ie bloods and an x-ray and thank goodness she got someone to write me up some pain relief! I am used to my bloods and my x-rays coming back normal but it still irritates me as I really don’t like going to the hospital for something I could deal with at home; but htis is where it all went wrong for me. The junior surgical doctor came to see me and tried to pass it off as duh duh duhh scar tissue! She said I could go home with oramorph this was at 2/3am; I explained to her about the lack of activity with my stoma and that if it was normal I wouldn’t have had any concerns about going home. She went back to the nurses console which was maybe 2m at best from where my cubicle was and I heard her and the male nurse passing comments about me and how I didn’t want to go home. The male nurse even remarked “Do you think she is making it up?” and she responded with “The reg doesn’t even want to see her.” I literally broke down in tears at hearing that.
Every single person with an invisible illness fears not being taken seriously and their pain or suffering being ignored. No I am not a medical professional but I am an expert on me and how my body responds to certain things. When she came back I politely confronted her about what I had heard and said neither of us have a magic window that allows us to see into my body and work out what is going wrong, I understand that I have a fair amount of scar tissue but they tend to be lower down. She seemed to sympathise by saying she knows no two patients have the same pain and she defended the nurse by saying “It was just that time of night.” Sorry love but no no it isn’t; if there is a “that time of night” when working night shifts it is 5am when the shift is nearly over and you are exhausted but even that doesn’t excuse staff from being unprofessional, people that go to A&E for genuine reasons are vulnerable and shouldn’t have to hear staff talking about themselves in such a manner. She also said she would admit me but the surgeons probably wouldn’t scan me, I just said to her that if my stoma was working I would have gone home. I have never felt so invalidated in all of my life; if I thought I should have stayed at home and self medicated with oramorph I would have just done that rather than use valuable NHS resources.
At around 4am I was taken to ward 37 and directed to a recliner chair as there were no beds, I had to ask for a blanket and a pillow which were given without any hesitation and something to eat. They even made sure I had juice not water after I mentioned about too much plain water flushed out the electrolytes and could make me dehydrated – not everyone knows that including ostomates so I don’t expect nurses who are general nurses too! The next morning the surgical team came around and suggested it could be gall stones and a scan was to be done. No food but I could drink; fair enough so I waited for my CT scan and ordered sandwiches at lunch for after my scan. It was 5pm and the military nurses (Hayley, Hannah and Katie) who couldn’t have done more for me even if they tried were rushed off their feet and still kept coming to let me know there was no update on my scan without me asking; they passed it over to the surgical team to find out what was happening. By half 5 the nurses just gave me food because they felt I had gone long enough without food; this was obviously a relief for me especially as I hadn’t emptied my bag once since 1am.
I had tweeted about my experience in A&E and tagged some of the hospital directors who had accounts on there. I honestly felt that strongly about it and still do. The surgical doctor came up and apologised about the scan not going ahead and that it was due to illness in the department – fair enough we all do get sick. He said the scan would happen in the morning and he would see I got a bed rather than the recliner which I thought was nice of him. Around 8pm I was told I was being moved to ward 2 but it was in error only for me to be moved to ward 7 by 10pm which is a surgical ward. My nurse for the night was Allison and she was spot on, really friendly and even though she was busy she explained she would get back to myself and the lady in my room as quick as she could – which is fair enough really. Sadly as I was talking to Claire my roommate I started to hallucinate amitripyline and morphine together is not a good combo as her face changed entirely as if it was hessian and her features were that of a pumpkin. By 1am I was quite thankful we both needed to sleep. I haven’t hallucinated on anything since 2008 when on tramadol.
I was told I was on what was known as a red bed which basically meant it wasn’t used except in emergencies which I was not but I expect it was to do with the wards being full and it was now being used as an overflow bed. The next morning the surgical team again came around and said scan should be done hopefully that morning. One of the nurses came and told me by lunch time that the scan wouldn’t be happening and I could just eat as normal. One of the stoma nurses Angie came to see me and her very plausible theory was that my bowel could have kinked slightly and would/could unkink by itself. I think personally that that is what probably happened as it would explain the pain and lack of output as by the time I saw her I had only emptied 2 full bags from being in A&E. She nicely got me some more supplies as I only had one bag with me as an emergency. My tweets were replied to by one of the directors and I was visited by Amy the associate director of nursing I believe, regarding my tweets. She was very nice and seemed to take me seriously and she seemed quite disappointed about my experience in A&E, she said she was meeting the person in charge of the urgent care department later on that day and would pass on the feedback. Later on that evening the phlebotomist Thomas came to see me and inserted a cannula which made me think the scan was never really booked in, or booked in properly. I asked him if he would tape up the “octopus” as I struggle with the dangling and look at his mad skills! He just flipped the cap and tucked the tubes in and shut the cap absolutely genius.
The next day I mentioned to a foundation doctor that my legs were aching not painful but aching, I had only removed the ted stockings due to one laddering and I had been mobile whilst not in pain. She looked at my chart and noticed I hadn’t received my blood thinning injection the day before, the next thing I know one of the lead nurses was checking my chart and asked me why I hadn’t had it and I just explained I thought I must have only needed the one I had on ward 37. I was given one by 11am and old my scan was booked in for 13:20 that afternoon. Amy came to visit me again and I let her know that since leaving A&E my admission had been positive as I don’t believe there is only negative feedback that should be focused on. I had to not eat anything for 3hrs prior to my scan and half an hour before I had to drink 900mls of plain water this obviously concerned me when it came to my electrolytes but I seemed to be okay. My scan time came and went but half an hour later I was laid next to the CT scanner and I asked what they were looking for as I remember a nurse saying the notes for my scan can’t have been a priority for them. The radiologist said she thought they weer looking for a collection; so unless that is what they describe gall stones as I don’t know what other collection they could have been looking for. The scan itself isn’t very long and the worst part of it is just the feeling of warmth as the contrast flowed across my chest through my veins then the unpleasant feeling like you had wet yourself – you don’t by the way and both feelings are short lived.
By half 4 a nurse on the ward gave me some morphine as not long after eating the pain under my ribs came back with a vengeance, then she came back and said scan NAD you can go home. At this point I just felt defeated and I started to pack my things up and collected my medication; then left the ward to go catch a bus so I could surprise 00Steve and the kids as they hadn’t been able to come visit. Don’t get me wrong I am really pleased in one sense that nothing showed up on the scan because let’s face it I don’t want another thing wrong with me but I would have liked to have had the pain explained. I also ultimately don’t mind too much that the scan was delayed since I wasn’t bleeding internally or dying or have cancer, but even though they are the priorities I am also important and if the scan was done on Tuesday it would have freed up a bed and we might have seen if my bowel was just playing silly buggers. I definitely don’t think it was all down to scar tissue even though that does give me a lot of jip.
I probably will follow this up with a complaint to PALs but right now I am still trying to manage this stupid rib pain but at least my stoma is currently working! I fully believe that all feedback is good feedback; you aren’t able to improve a service if you don’t hear negative feedback and staff can be discouraged if their hard work isn’t praised when due. I make a point of telling staff themselves if I can when I think they have done a job well done.