I was diagnosed with Ulcerative Colitis (UC) in 2006 after continuously being run down, losing weight, having poor appetite and mood. It was kept at bay with a myriad of tablets for about a year before I started getting severe abdomen pains and continued to lose weight. After three visits to the hospital, weeks of IV steroids, 13 days awake straight and 20 kilogrammes dropped in less than a month, late 2007 I ended up in emergency surgery and received a temporary ileostomy I called Squish. This was one of the most challenging times of my life. Before UC I considered myself to be an outgoing active person and used to pride myself on being the life of the party. Now I was severely depressed and couldn’t look at myself in the mirror without crying, let alone leave the house and be social. Luckily I had some amazing friends that stood by my side (sometimes literally holding me up) even when I was pushing them away.
"I was severely depressed and couldn’t look at myself in the mirror without crying."
I recovered well and I felt human for the first time in a long time, so I proceeded with the next scheduled surgery to create a J-pouch and received Squish 2.0. Things went wrong from here, instead of recovering as well as I had the first time I got sicker and spent many nights in the emergency room including New Year’s eve 2008. They found I had peri-anal fistulas, my body was rejecting the J-pouch and I had red bumps on my legs (Erythema Nodosum) that caused so much pain when walking, that at the age of 29 I was required to use a walker to keep some independence. I was overwhelmed and I unbelievably felt worse than before it all began. I was again on a myriad of pain medications, antibiotics and steroids that generated mood swings and the world notorious round face on a bone-thin body. I had a few different surgeries to fix the fistulas and save my J-pouch and October 2008 I had my ileostomy reversed and began the path to recovery.
I was well for about two months before it all went pear-shaped again and by Christmas 2009 I was in unbearable pain and after many consultations with my surgeon we decided to give Squish 3.0 a try while we looked at other options. I underwent a few more minor surgeries and it became clear that the options for reversal were running out. Luckily I met my future husband in November 2009 and I began to start thinking about the quality of life. I started looking around for second and even third opinions about my situation and where to go from here. It was are this stage I began to realise that while reversal was still an option the quality of life I would expect with it was not going to be great. In July 2010 I made the decision that Squish was meant to be part of my life and underwent the final surgery to remove my rectum and create Squish 4.0. Unfortunately, as Murphy’s Law would have it, my rectal wound broken-down and another surgery was required to fix it. In December 2010 I had my final surgery which left me with an open wound the size of a fist and the thought that I would never be able to flop on the bed again without pain, however, three months later it healed and I began to plan my future.
"I met my future husband in November 2009 and I began to start thinking about quality of life."
Overall I ended up having five major surgeries, seven minor procedures, countless hospital and specialist visits and four different stoma’s. And although it was a painful period of my life I wouldn’t change a thing as I would not have been the person I am today and would not have the adoring husband that took me scars, bag and all. Having a stoma has not stopped me from doing anything, actually I think it has even made me braver and definitely more aware of what life has to offer and that I should never take it for granted.
April 14, 2017
You are amazing. I admire your courage, strength, honesty, and humility. I can’t imagine what it was like for you but your words give me an idea. You are a role model and a leader. You are one incredible woman! I’m lucky and happy be your friend.
April 14, 2017
Thank you, Phyllis.
Peter and I were very lucky to have met both you and Ken on the cruise. We look forward to catching up in the future, the only question will be in which country.
August 29, 2017
What a journey! More operations than me but everyone has their own journey. I was diagnosed with Crohn’s disease in 1987 but I had it long before as I had problems in childhood. I missed a year out of school and had an exploratory operation in 1985 where they removed part of my bowel. I had my total collectomy and illeostomy in November 2013 and the following year found out I had bile duct stones and cirrhosis of the liver. I also have PSC which was diagnosed in 2008. I’ve had several procedures to remove the stones and now take medication. I’m long term sick and get state benefits which I can live on.
August 29, 2017
Wow Christopher, you are correct everyone has their own journey and all have there challenges. Thanks for sharing 💜
September 27, 2017
Hi Erin,
Wow your story is very interesting and could be a good book in the future. An inspiration to others as is this website. I love the name inside out as I am studying Internal Family Systems therapy that was featured in the kids film inside out.
I too had issues with a j pouch and in the end said no and kept Harry my ileostomy. I have written about it in my top twelve tips for women, simple tips to help you live in harmony with your ostomy. You can find it on kindle let me know what you think.
Blessings
Louisa
September 27, 2017
Hi Louisa & Harry, I will check out your book, I have thought about writing one , maybe in a few years times. I’m only getting used to writing, it’s not my forte as I’m actually an accountant 😂. Where are you based? And do you have a FB page?
October 15, 2017
A somewhat similar story too myself. In 2003 I was 21 years old, I began to have bleeding and a quick and drastic drop in weight. After a colonoscopy it was discovered I have evidence of both Ulceritive Colitis and Crohn’s Disease. I was one of the first patients in my home Province of Alberta Canada, to receive Remicade. Unfortunately I only received the side effects and after the first dose was given an Ileostomy.
I made the personal choice to not opt for a J- Pouch as I was so far underweight and told I may need a reversal in the future. I did my best to accept my pouch as a part of me. “Charlie”, my little chocolate factory has been with me ever since!
I was later diagnosed with Multiple Sclerosis oddly enough on New Years Eve 2007. The doctors were only able to undoubtedly confirm I had Ulceritive Colitis in 2012 when I developed an incredibly rare skin disease called Pyoderma Gangrenosum. This is seen in those with Ulceritive Colitis and is likened to UC on the surface of the skin.
Just as with you, I always wanted to share my story, which I did starting in January of this year. Love reading your experiences, as Christopher said, we all do have our own journey and challenges. It’s nice to see different perspectives of how we overcome these challenges.
October 15, 2017
Thank you for sharing your journey Dave, your story is one fraught with difficulties and strength. I’m honoured to be in the same category as you and hope to meet one day in the future.
October 31, 2017
Hi! This is my first visit to your blog! We are a group of volunteers and starting a new initiative in a community
in the same niche. Your blog provided us beneficial information to work
on. You have done a outstanding job!
November 17, 2017
Great post!
January 8, 2018
Hi,my name is Bron,from Sydney,Australia ! I have had a permanent ileostomy for 15 years now and like all these people I just read about,have a long story…..unfortunately I’m recovering from a nasty migraine so don’t feel like writing much,but,I just wanted to say to Erin in particular,thanks so much for getting this blog together. I have for 15 years been saying that I want to start a support group,help others in some way,etc,etc and life has just got in the way. Being a mum,wife,working and now a new grand mother has prevented me getting off my arse and doing something but after reading about you Erin in my ostomy journal I feel my urge to do something has been refreshed !! Thank you,I look forward to reading more and I will keep you posted on my attempts at getting a support group together , Bron