Did something turn your world InsideOut? Me too…
Pre diagnosis I considered myself an extrovert, I had always been relatively healthy besides low iron and the odd migraine. To be diagnosed with ulcerative colitis, living in the toilet, some nights literally sleeping there as it was easier and more restful then getting up repeatedly. While some days my sister would flip the clothes basket and sit in there with me playing cards with me to distract me from the pain to a perforated bowel and an ileostomy within a year was a huge shock to the system. I couldn’t understand how I could go from working full time and partying weekend after weekend to not being able to leave the bathroom, hold my own head up or walk without assistance.
I was living in a nightmare of sickness and pain. I received a temporary ostomy on 4/12/2007 and was told this would be my saving grace and it was as I was still alive and no longer tied to the toilet, well, for a period of time anyways. I know I should have been grateful but I couldn’t see past the darkness that had formed in my mind. I hated myself and I couldn’t look at my naked body without crying. On more than one occasion I contemplated what difference it would make if I just didn’t wake up tomorrow.
Regardless of my mental state I recovered rather well given I was so ill going into the surgery. I still had at least two surgeries to endure before getting my reversal and even then it wasn’t guaranteed it would work for me, not that this stopped me pinning all my hopes on it. My recovery after my second surgery to create the ileal j-pouch didn’t go as well, I woke up with staples from my breast bone to my pubic bone and was in constant pain, finding myself living on Fentanyl patches to get the through day. After several trips to emergency I was admitted to hospital with an infection and after some investigation found they found a peri-anal fistula.
My reversal surgery was put on hold as I was put under to repair the fistula in Sept 08, the first of many I was to find out later. From there I rushed through to the third surgery in October 08 with the hope that a j-pouch would fix it all and I would soon be back to the path I had set out for myself. I was sorely mistaken as soon after getting my j-pouch I got pouchitis and my fistula return only now I had the added bonus of being able to somehow poo out of my vagina, not a pleasant thought for anyone.
I spent NYE 08 in hospital where I met my now best friend who happened to be in there for an unrelated issue. I had another failed fistula repair operation in Jan 09. Only to end up with a third temporary stoma in March 09. He wasn’t so bad, I 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 occurred, along with the development of Erythema Nodosum, which lead me to using a walking frame to get around when I could at the ripe old age of 29.
I had met my husband the year prior, and although reversal was still an option so was the removal of the anus and with it all the UC symptoms, if it was indeed UC as my specialists were starting to suspect crohns instead of UC and we proceeded as such. 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 considered living with an ostomy for the remainder of my life. After getting a second and third opinion I decided I would do it and in October 2010 I went permanent and had my anus removed. As my fate would have it my rectal wound broke down and an additional surgery was required in December 2010 to get rid of the infections.
This left me with a gaping wound the size of my fist that needed to be packed daily for over three months. I thought I would never be able to flop on the sofa or ride a bike again but as the months passed the wounds healed and I could eventually do everything I could do pre ostomy.
Stronger than before
I tell you all this not to scare you out of choosing ostomy surgery as its never really a choice but to let you know that even after enduring three years of hell, I have come out the other side stronger than before and so glad that I didn’t give up on myself.
Since becoming an ostomate I have found love and the man of my dreams and got married. Together we have travelled the world, I run, I hike, I go to the gym and lift heavy weights. I work and am a productive part of society. I also volunteer a lot of my time to aid others going through the similar challenges.
I do get tired and there are days where I need to take time for me but overall I am pleasantly surprised 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 start my blog InsideOut Ostomy Life.
By Erin Goodwin
Visit Erin on her personal blog website – www.insideoutostomy.life