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There are days in which I actually do wish that my pain would end, with sweet blissful death. But in most cases I am fighting so hard to stay alive that I at times believe I’ll out-live the cockroaches – and we all know that not even a nuclear holocaust can kill those little shits.

I know my health situation isn’t that bad, not really. It’s not like I have a physical disability which affects my mobility, or senses. I can easily move around and function in a relatively normal fashion. But it’s this never ending cycle of Urinary Tract Infections, Urinary Retention, Surgeries, Procedures, spend most of my childhood hopped up on medication, and being able to name my body parts as a young 6yr old – using such words as “penis”, “vagina”, “bladder”, “urethra”, “breast”, “abdomen”, while most of my cohorts used words such as “winky”, “boobies”, “cunt”, “tummy”.

My latest joy in life is an indwelling catheter – or more properly termed a “folley”. I have had this sucker for 23 months now. And it has been irritating the crap out of me. I want to be able to use my stoma – I went through 11hrs of brutal surgery to get the stoma, I better be able to use it. But sadly I can’t. Just this past week I spent a couple days up at UCLH (University College London Hospital) so that the Urology Specialist Nurses could check to see if it is possible for me to catheterise on my own. The nurses had difficulty getting a catheter in, and they do hundreds and if a stoma nurse can’t get a catheter in then there is something to worry about.

Saw my Consultant – or for those of you in North America – Staff Surgeon or Specialist. I will need to return to UCLH for further testing, probably being put under so they can do a thorough investigation of my stoma. Where are the issues? Is it the channel itself? Is it the flap leading into the bladder? Is the channel full of scar tissue? These cannot be investigated easily, so I need to go under a general anaesthetic for this. Oh the joy!

My fear is that I will need further surgery. I was warned when I got my Mitrofanoff back in late 2007, that there’s a 30-40% of further revision being needed. Surgeons can work wonders, but it doesn’t matter how good of a surgeon you have no one can predict how the human body will heal.

Back when I was young I was able to bounce back quite easily from surgery. But my last “big” surgery was brutal. I was on the table for 11hrs and I had 2 departmental chiefs working on me. I was finally wheeled onto the ward but whilst on the ward I fell asleep – because my blood pressured plunged to a very dangerous level, my pulse was thready and my breathing wasn’t that great. So I was in ICU for 5 days while they worked on getting my blood pressure stabilised. Once back on the ward, again, I developed multiple infections – my incision got infected & it was turning grey (which means the tissue is dying) so my incision was opened up in 3 places .. took a year for those holes to be closed. My IVs died, going interstitial and no one could start an IV on me. Infectious Diseases and Urology couldn’t do anything – at one point the Residents were able to get blood from my femeral vein, but the sample was tainted. Finally Infectious Diseases got a PICC installed – which is a surgically inserted copper tube in the vein with 4 ports .. that took 3hrs and it was fucking painful.

After being discharged I discovered I got MRSA – so another 10 days in hospital.

This was not a good recovery for me.

And I dread going through something similar. So when the UCLH Specialist Nurses couldn’t catheterise me I cried, great big heavy sobs. I don’t cry that often, but I felt my world crashing. And due to geography I was all alone.

So I am hoping that I don’t need surgery, but the realist in me knows that I will have surgery. The only things to ponder are – when, where, and how intrusive will the surgery be.

 

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