Three years of hell for Life!

All my life I had been relatively healthy, besides low iron and the odd migraine I had no issues. So to find myself going from that to living in the toilet, being diagnosed with ulcerative colitis (UC), a perforated bowel and an ileostomy within the year was a huge shock to the system. I couldn't understand how I could go from a fully functioning adult to not being able to stand, wash or walk without assistance.

I was living in a waking nightmare. I received a temporary ostomy on December 2007 and was told this would be my saving grace and it was as I was still alive. I know I should have been grateful but I couldn’t see past my self-disgust. I hated myself and I couldn’t look at my body without crying. On more than one occasion I considered what difference it would make if I just didn’t wake up tomorrow.

Regardless of my mental state I improved fast given I was so sick heading into the surgery. I still had at least two surgeries to undergo before getting my reversal and even then it wasn’t certain it would work, not that this stopped me connecting all my hopes to it. My recovery after my second surgery to create the ileal j-pouch didn’t go well, I woke up with staples from my breast bone to my pubic bone and was in persistent pain, finding myself living on Fentanyl patches to get the through day. After several trips to emergency rooms I was admitted to hospital with an infection after some investigation they found a peri-anal fistula.

My reversal surgery was put on hold as I was underwent surgery to repair the fistula in September 2008. From there I rushed through to the third surgery in October 2008 with the hope that a j-pouch would fix everything and I would soon be back to happy and healthy. I was sorely mistaken, soon after getting my j-pouch, I got pouchitis and my fistula returned.

I spent New Years that year in the hospital where I met my newest best friends, laying in the bed next too me. I had another failed fistula repair operation in January 2009. Only to end up with a third temporary stoma two months later. He wasn’t so bad, I even managed to ween myself off the Fentanyl, a whole different challenge, one I have chosen mentally to block from my memory, it only appears as a hazy view of throwing up and withdrawals that made my heart race as through it was going to beat out of my chest.

After six months I decided I could try working again and given Squish 3.0 was being nice I decided to give myself a break from surgery and got a good job as an accountant for a great company. It didn’t last long as more fistula surgeries and wound breakdowns followed, along with the development of Erythema Nodosum, which lead me to using a walking frame to get around before the age of 30.

Lucky for me I met my husband mid-nightmare and while another reversal was an option so removal of the rectal stump and with it all the UC symptoms. I was sick of hospitals and the sheer disappointment I felt after every visit to the specialist.

I wanted a permanent solution and for the first time ever I deliberated living with an ostomy for the remainder of my life. I got a second and third opinion and after some discussions with my hubby, we decided I would do it and in October 2010 I went permanent and had a Barbie butt created. As my fate would have it my rectal wound broke down and a further surgery was required in December 2010 to get rid of the infections.

This left me with a deep wound the size of my fist that needed to be dressed daily for over three months. I thought I would never be able to flop on the couch or ride a bicycle again but as the months passed the wounds healed and over time I could do all I could do pre ostomy and more. I have come out the other side stronger than before and so glad that I didn’t give up on myself. Since getting an ostomy I have married the man of my dreams and together we have travelled the world. I work and am a productive part of society. I run, I hike and I go to the gym. I also volunteer a lot of my time to help others going through the similar trials.

I do get worn-out and there are days where I need to take time for myself but in general I am pleasantly amazed with how my life has turned out and wouldn’t change it as without enduring everything I have, I wouldn’t be the person I am today and I wouldn’t have got the opportunity to meet my amazing hubby Hive account@shai-hulud.

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