In March 2015 I was recovered enough to leave my mums and return home with my little man and start to rebuild my life.
But my body didn’t want too see it that way and my health battles continued. The same symptoms being a daily uphill battle, rattling full of medication and needing to be hospitalized every few weeks to months. I was referred to a Specialist in London and a Palliative care consultant to try and resolve the problems once and for all. But my health issues continued.. It became more about managing my symptoms rather than solving them, whatever it was did not wanting to stop playing games with my body.
In April 2015, after my doctors liaising with each other it was agreed that a reversal now not an option. I was still suffering and my bowel still had problems. Not the news I wanted although now where more good days than bad, it did take a long time to acknowledge the fact i would have a bag for life and even now still have mental lapses and struggle with it, through talking and support realized now i am quite normal in that, i still need to remind myself that it saved my life! and gave my son and i more good days together. To me that outweighs all the negativity i had about the stoma initially.
On October 3rd 2015 my stoma prolapsed while at a work event due to over doing the “old lady moves” on the dance floor. I collapsed with pain and later woke in Manchester University hospital, where after monitoring and the bowel returning to normal size, i was allowed home.
I had a follow up with my surgeon due to the prolapse. Thankfully we agreed that as I didn’t want more surgery and that we would monitor and see if it happened again. If it did then it would mean further surgery.
Of course it did!!
This time it only partial retracted and remained 6cm long for a few months until i could have the surgery to correct this.
In December 2015 i was put on the theater waiting list. Thankfully in November after two hospital re admissions my Palliative care doctor finally was able to diagnose what i had been suffering for over two years. To hear that i actually had a diagnosis was a huge weight off my shoulders and meant we knew what it actually was and how the suffering could be controlled.
He stated that i have Autonomic Neuropathy Disease.
Autonomic Neuropathy Disease is a group of symptoms that occur when there is damage to the nerves that manage every day body functions such as blood pressure, heart rate, sweating, bowel and bladder emptying, and digestion. As a result, treatment and self-care is focused on managing the symptoms and preventing further problems.
Having an incurable illness for life added to the ostomy emotionally still coming to terms with, knowing the daily battles aren’t going anywhere brings you to a whole new low point hopefully on the correct medication we would be able to manage it more and have no more than two big relapses leaving me in hospital a year.
But still, sad news or not i had a diagnosis. He also stated that Colitis had been found in my large bowel following another Colonoscopy.