March 2014 whilst in hospital for assistance in emptying my bowel
A new symptom made its appearance. Urinary Retention, which lead to me being catheterized. With more tests they found that my bladder was being compromised due to the swelling from my loaded Bowel.
A few days after being discharged, i was re-admitted due to bowel failing to continue to empty and my bladder in “retention again”. Twice they tried to see if my bladder could cope without a catheter in but was unsuccessful.
The Doctors then decided it was best for me to have a temporary catheter in to protect my bladder so that it didn’t become any more damaged and compromised than it already was.
I had lost count the amount of times when out with family and friends that i would have an accident where my pouch leaked and wet myself in public, Of course the expressions of those around me seeing an adult have an accident was priceless, which hurts emotionally but i had to get used to it.
I then obtained clearance to work as the bag wasn’t going to stop me! As it was to become my best friend for over two months, this became my new norm every time my bowel and health flared up.
With another admission in July 2014 I left with issues in my left hip and trapped nerve in my spine. Physiotherapy had found that my Hip had dropped due to muscles and tissue being eaten by the type of steroids that had been injected there to help with my sickness. I needed crutches for a good few weeks to help get me around otherwise i would of been a couch potato again!.
Struggling from room to room, getting dressed, bathing, lying or sitting. I couldn’t escape the pain, intense physiotherapy helped and I returned to work.
Unfortunately I still suffer flare ups. To which my friends give me a firemen’s lift or a piggy back in aim to keep me socializing and getting out of the house.
In August 2014 my consultant at Rotherham General gave me his long term diagnosis as the past year and short term diagnosis didn’t get us anywhere.
I really wasn’t ready to hear him say that i would require more surgery! or to hear he planed to remove over 25cm of my large bowel that had died.
Scared – Yes
Confused – Yes
Freaking out – Yes I spoke with my GP and we both agreed to seek a second opinion.
At the beginning of September 2014 i saw a new Gastro Consultant and Surgeon at Sheffield Northern General Hospital. Where we started Colonic Irrigation to see if it helped and to cross another treatment off the list. But along with all the previous attempts, this failed. The community nurse stopped it after four days due to leaving me bed bound and crying and doubling up in pain.
A day after stopping this, i was admitted again for my bowel and pain management.
Then it happened… the big life changer.
In the few days of being discharged, I had became really ill; Pain in neck and joints, Long lasting headache, No appetite, Swollen red eyes, Urinary retention, Constant throwing up, nausea, Dehydration, Severe abdominal pain, Swelling, Dizziness and the feelings of collapsing when trying to move or use the bathroom, Shivering and feeling of being so cold – with numerous layers and bedding on me but I still felt so cold Tachycardia/ Palpitations.
My GP had me admitted to hospital where I was Catheterized, drips to re hydrate ,blood tests, scans, a lot of medication to try and ease and take the symptoms away.
For a week the doctors battled to try and control and find what was happening in my body. 19 laxatives in many forms a day to try and get my bowel to give up months and months of backlog as this being the key to the other symptoms.
The nurses kept joking that they will have to resort to using dynamite as nothing else worked. With them failing and my body weaker and now unable to tolerate the medication, I had deteriorated and became seriously ill.
I started to vomit my own faeces, In the space of only half an hour had vomited over two liters of my bowel contents and my stats plummeted which was a worrying sign for the nursing staff. I had a NG tube placed to protect my stomach and put on Oxygen. I was closely monitored, due to all my condition, We also had to stop my son visiting as the sight of me would of scared him.
The next day my surgeon came for a serious conversation with me. He said he wanted to perform emergency surgery and to give me a Loop Ileostomy with hope of a reversal a year later, as I couldn’t continue due to my rapidly deteriorating health and was at risk of my bowel perforating.
He gave me time to try and get my head around what was my only option (if that was an option) to get better and to get my life back. I spoke with the Stoma nurse, she discussed what it was, how too look after it and the key six months after surgery where at risk of something happening or the formation of a hernia.
Of course I said yes! to it as the alternative was not an option, So on the 21st of October 2014 I was taken down for major surgery and “Piter” my Loop Ileostomy was born (They say to give them a name as it helps mentally with dealing and adjusting to life with a stoma – we aren’t just fruit loops for naming our stomas) The next five weeks in hospital was still a battle. Weak and frail from my condition before surgery and then major surgery, but still problems existed!.
The NG tube was put back as I was Still vomiting my own faeces, oxygen, drips, tests, laxatives and catheters in my stoma to try and get it working. Step by step we built up to moving, walking, learning to eat, how to change my bag and maintain my stoma. Mentally trying to get my head around what had happened and seeing the bag on my abdomen was very hard and challenging. This had become the hardest time of my life.
Panic attacks where a daily occurrence at the sight of my bag and the medical products needed to look after it. I was left feeling disgraced and disgusted at the sight of my own body!
Not wanting to communicate and join in with my family and friends. The feeling of being alone, unhygienic and dirty 24/7 due to having the bag, being forced and learning to eat again, so much more was going through my head could not see life and/or how i could live it again.
This wasn’t the end as my body wasn’t prepared to let me recover and live my life yet!
Again i was suffering the same symptoms as the past year and a half and my small bowel wasn’t functioning for itself. Still on many medications, laxatives where added back to the list – shouldn’t need them with an Ileostomy! but my bowel refused to do anything it should. So why start now?
From being discharged in November. Every week i was re-admitted to hospital with the same symptoms and problems as before. Again tests and procedures performed to find out why my small bowel wasn’t functioning.
It became apparent i was also suffering slow transit and had a mechanical fault in my bowel. My surgeon listed me as needing an urgent operation to sort the problems out.
On the 31st of December 2014 I went under for my third time. What should have been a routine operation became major surgery as my bowel was worse than they first thought.
“Piter” in this operation became an End Ileostomy rather than a loop. They kept my large bowel in even though not attached as there where still had hopes of a reversal.
Mentally struggling to cope two weeks after surgery i asked work if i was able to go back even if it was to do nothing. I needed it to pull me through. I got clearance from work and Occupational health and went back to work against the wishes of my Doctors and Stoma nurse in the middle of January 15.