Yesterday was a difficult day at school. The pain I had been having was increasing and radiating down my legs, into the genital/anal area, and any kind of movement made it worse.I ended up propping up my legs on a chair in front of me to take pressure off my butt. Morphine wasn't working, and as my Friend and I were leaving I was begging her not to walk so fast as I couldn't keep up due to worsening pain. Fi had watched this progression of pain for the last four days and insisted on a Hospital visit. Knowing I would have another night without sleep I agreed. It differed from the normal pain of infection, as normally the pain isn't this bad, that is the difference I have experienced since having this surgery, its mainly bowel pain over bladder symptoms of pain and urgency and supra pubic involvement.
While I was in E.D a nurse mentioned I have an outpatient visit next week, surprised I replied no. An appointment had been set up for the Urodynamics next Monday. "What?", "Well I haven't even received a appointment time for this?", also the way my surgeon spoke in my last meeting that he had made up his mind about my bladder capacity and I believed it had been cancelled due to not receiving any appointment time. Later when talking to a Dr I asked about this, they added that they knew about the stone being removed, "What about the stoma revision?", "No nothing written about that", adrenalin kicked in then, on top of the pain and exhaustion I was close to tears once again believing nothing was going to be done to remedy this bloody leakage. The good thing was the adrenaline temporarily helped the pain surpassing the constant labour like pains. When I had to empty my bladder to do a urine test the nurse had given me a size to small surgical gloves(which I don't use), I was dicking around trying to break up my mood, Fi asked me to show her sterile technique for opening the pack(I had passed this years ago), I flipped them out and they hit the ground, "you failed" she pipped up cheerfully, then the plastic container I had emptied into had crushed in a wee bit between my legs, so when I went to remove it, it bounced back causing my infected pee to splatter everywhere including on Fi's bag. I squealed just as the Dr walked in.
This A and E Doc was going down the" try some more paracetamol, and Brufen", road. I tried to tell her I have been down this track many times and know what does and does not work, but she was adamant they would help. I don't have an aversion to O.T.C meds, and had been taking paracetamol ect already.
The thing is Opiates can damage your kidney's, paracetamol can damage your liver, and anti inflamatories can damage your stomach i.e ulcer, being on any of them in excess is not cool.
With chronic pain I limit what I take, and know that also paracetamol does tend to make me quite nauseous if taken for extended periods as does the morphine, and ibuprofen or anti inflammatories increases my diarrhoeaexpedentally, so I have to take more opiates to control it. So its a juggling act. I took what she gave me, which didn't help. Because I was so exhausted I became tearful at the thought of this pain being the norm, no relief from the leakage, and not being informed of a test I thought had been cancelled. I was given some Gent. for the infection, and at that stage wanted to leave before the urologist turned up as I knew they couldn't do anything.
I am becoming so confused with the mixed information Im recieving, I want this all behind me. I had tried to talk to my nurse about the frustration and she replied "oh don't go getting angry about this everyday!",then she walked away, a W.T.F moment I had never even met her before.. She has no idea that I didn't get angry daily about this shit situation, I was trying to live my life. Which was difficult while I was being dicked around constantly!
The I.V kept blocking so I was fiddling with the drip (a No, no) to get it flowing so I could leave. I was also joking with poor Fi who was sitting with me. I know how to manage a drip( through training), but I was busted by a Dr who saw me and informed my nurse who speed over to check it out. I knew you don't speed up gent, or I would have vomited, which I hate.
I became more determined to leave and managed to get myself dressed. The urologist came, and I expressed my frustration at it all. She thought the pain could be ovarian on top of all he other crap, I have had hemorrhagic cysts in the past. For once someone noticed I wasn't just a urology patient. Every time I go in the first and generally last point of call is my bladder. A broken leg, don't worry you have a Neo Bladder lets treat that, type of scenario, its called blinkers. They thought I should stay in, I burst into tears and said no. The pain was still pretty bad, and what the medics don't realise is I mask it quite well usually, and make the most of the moments in between. Before I left I was given some Buscopan which is an anti spasmotic. The Urologist was really good, they are following up all the B.S today, the pain is still shite and it took me ages to get to sleep last night. I was given a letter to go back in today if things are still awful. I apoligised to the Urology Doc for being all emotional, it wasnt her fault. I am waiting to hear back from them today regarding whether or not I'm having Urodynamics on Monday. In the meantime the diarrhea has increased from the ibuprofen, nice.
The tip for the day: Dont prejudge your patients based on their emotional state while exhausted, in pain and being dicked around, you dont know what they are experiencing and making shite comments, and walking away only exaccerbates the situation.