Time for change

Time for change

I have two health related anniversaries coming up –

35 years since I acquired my first stoma which was a colostomy.  This made me better for a while but was shortly replaced by an ileostomy which meant I waved my rotten colon goodbye relieving me of awful illness and welcomed my new stoma onto my tummy.  It was like a best friend; it restored my bowel health completely.  

My permanent goody bag.

Almost 5 years ago I had a hysterectomy, which nearly killed me.  I spent months in hospital being vein fed as I couldn’t eat or drink.  I ended up with an abdominal fistula with several tracks, two of which come out onto my tummy - where the rest are tunnelling, God only knows! I now have my stoma, fistula bag one, fistula bag two, a very grumpy bladder with frequent UTIs, gallstones, scleritis (an eye condition), everything that comes with surgical menopause and severe depression and anxiety.

On a personal level, life as I knew it has completely changed. 

Most definitely my baddy bag. 

They tried to repair the fistula almost 3 years ago but that failed resulting in respiratory failure and intra-abdominal sepsis.  When they describe sepsis as you feeling like you want to die, they kid you not.  Death would be the preferred option when sepsis is taking over your body and mind. 

So where am I now?  This year hasn’t been great.  The eye condition took hold in February and has lurked all year.  It’s agony and debilitating and I have spent all year it seems in the optician and the emergency eye clinic all of whom aren’t quite sure of the diagnosis.  My husband has been unwell; the strain is definitely starting to affect him. 

The way my health issues are managed is also pretty chaotic -

  • The main Consultant is in a hospital 100 miles away, a very busy man. He always sees me in fairness but as this fistula was caused by surgery, my options are limited. 
  • They say there is no underlying disease yet I had an ileostomy for bowel disease so every doctor I see assumes the fistula is a Crohns fistula which it isn’t. I’m not on any medication for Crohns as there isn’t enough evidence to warrant it.  Yet I am ill every other week with infections, viruses and all sorts of horrors.  I live a half-life most of the time.
  • The eye problem is usually linked to an auto-immune disease like Crohns but there is no evidence of Crohns and the eye problem only came after the bowel perforated, which suggests the fistula is causing it but no one can confirm or deny.
  • I see an opthamologist, an ear doctor, a skin doctor, a dietician, a stoma nurse, a gallbladder doctor plus the overall Consultant and another expert all of whom have different ideas and are based in different health boards. This causes issues and massive stress for me and my poor husband who, apart from everything else, drives me everywhere.
  • I also now see a psychologist who has literally saved my life.

This week things come to a head.  I was supposed to go into the hospital 100 miles away for an ERCP which is a procedure to check the gallbladder and liver etc.  My anxiety was building and slowly becoming the boss, taking the lead.  The thought of going back into the hospital where I had such awful memories was overwhelming.  I was convinced I would have serious complications again and be there over Christmas or leave in a body bag.  My head was exploding.   I asked the hospital if there was any help available for people like me, but no one replied.   When I told my nephews, I was going in and couldn’t come to their Christmas concert, one of them cried worried I was going to have an operation as ‘Operations make you ill aunty ‘.  After they left, I cried and cried and felt like I’d never stop.

There was no bed, so the procedure didn’t happen.  I saw the doctor as I was no nervous about everything I decided I’d go private -  he was very abrupt with me saying he’d told me to have this years ago, I was told off for contacting his secretary ( who had told me to let her know what was going on ).  I cried some more. I gave up. I can’t advocate for my health anymore, it’s too exhausting and too demoralising.  I need to stop looking for answers that probably just don’t exist.

I have to live outside the fistula prison and make the best of what I have.  There are many positives including my close family who are always there, the children who make me smile everyday, my forever friends and my cyber friends, and the doctors who show kindness and understanding even though they can’t provide any solutions. I can enjoy some foods, a beautiful cold drink an occasional glass of wine even - that is massive when you have been on TPN.   

I miss the old me, but she’s gone - it’s time for change.  I hope 2020 will help me find and embrace my new normal.  Baddy bag et al.