My Story with Ulcerative Colitis and Surgery

By Simoneer

3 min read

I was 21 years old, without a care in the world. Working in a family business and living with parents, life was good and relatively easy. I had very little interests outside of socialising with friends, drinks most weekends, working out occasionally, looking after my car and watching football. As far as the future went, my mind just wanted things to continue nice and easy.

At 29 Years Old, My Life Changed Forever

I began to suffer with stomach pains, bloody diarrhea and chronic fatigue. After several GP visits and being miss diagnosed with IBS, hemorrhoids and food allergies, I was finally diagnosed with ulcerative colitis, after a colonoscopy following being hospitalized due to severe illness.

I was put on steroids and azathioprine and gradually began to recover, starting out my new life with UC – reading the leaflets, following the advice and trying to follow the various diet recommendations. My immature mind told me all would be ok, to carry on and ‘its one of those things’, making little changes to my lifestyle. The next few years were a rollercoaster of balancing severe flareups, feeling ill, chronic fatigue and weight loss with family, drinking with friends, working, gym etc with neither area going well. Little did I know, my future wasn't looking bright and in trying to balance these ‘priorities’, I was laying no foundation for future wellness in any areas. Looking back now, I know my biggest mistake was failing to realize there should have been one core priority, mental wellness.

Surgery for Ulcerative Colitis surgery and life with an ileostomy bag.

In the vain world we live today, an ileostomy for ulcerative colitis to a 29 year old is terrifying. I underwent emergency surgery to have my entire colon removed, this was the single event that completely changed my life and little did I know, for the better. Things were not all easy at first. Waking up from surgery chronically fatigued, weak and mentally exhausted – I could not mentally cope with having an ileostomy bag. The week in hospital recovering and coping with the bag were the hardest days of my life, my head had been in the sand for too long and now I was paying the price for ignoring my mental wellness.

Finding The Strength To Persevere

Little did I know, but this event had started a fire in me. After returning home, little by little, my strength improved and with each small gain, so did my mind strength. I focused one day at a time and began to see things in a whole new light without ulcerative colitis symptoms. I had a future and a goal and from now on, each day i was going to do something in order to get there. With my severely ulcerated colon removed, I was now able to eat and eat well, which felt amazing.

Over the next few years I used my new found physical strength from improved diet and sleep, to begin a wellness journey improving my mind strength. Over the next few years I got married, travelled the world , retrained my skills to start a new career and dramatically improved my physical fitness and strength. Focusing on mental and physical wellness has given me the strength to not only cope with an ileostomy bag, but to thrive with it. To this day when I tell people I have an ileostomy bag, I usually get a shocked kind of reaction. Rather than let this bother me or feel insecure, I secretly smile as I know this has given me more strength than anyone could ever realize.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Traci Musick-Shaffer Moderator & Contributor
<inline-mention username="Simoneer" user-id="4840908"/> What a powerful story! And as life goes, Experience is the best teacher. Through experience, you discovered the importance of mental well-being. Like you, it took me years to understand the brain-gut connection. I didn't understand that my mental diarrhea needed to be treated like my physical diarrhea. I was explaining to another person in this forum how important meditation/fixing one's head space helps IBD. Not everyone understands that point. Your story serves as a testament to you resiliency and overcoming UC. Surgery doesn't have to be a terrible monster. Look at your journey! I'm glad you took the time to write down your path. I'm sure you will help others. Bless you! Stay healthy!--Traci, UC-IBD Team Member
Simoneer Member
Hi Traci, thank you for the kind words. I understand what you mean regarding mental health, it took me years to realise and possibly if it wasn’t for surgery - I may never have fully realised. I want to use my experience now to help others focus on wellness to improve symptoms. I have created a blog with more of my story in detail, called Thinkstrong.Uk if anyone is looking for further support. (Hope that’s ok to mention here) Thanks. Simon.
Sahara Fleetwood-Beresford Moderator & Contributor
<inline-mention username="Simoneer" user-id="4840908"/>, I’ve a very similar story, only I was 19. Lived with my mum, drank socially a lot, and worked to socialise, basically. I didn’t work out or have a car though 😂 I got sick basically overnight. I had diarrhoea and severe abdominal pain for two weeks. GP said IBS. I went to A&E after the two weeks, got admitted for severe dehydration, had the colonoscopy the same day, and was diagnosed with UC. The booklets I was given said that with the right meds and few dietary changes, I should be able to live a normal life. I was hopeful. I was being pumped full of IV steroids, but less than a week later, I had my colon whipped out. That recovery was tough. I had many post op complications including post op ileus, c-diff, and sepsis which led to another emergency surgery. I was still hopeful that once the stoma was reversed, I would be back to normal. Afterall, the surgeon had told me that my UC would be cured by removing my colon. I lived with a stoma for 2 yrs. Awful experience. Rubbish stoma nurses and had constant leaks and burnt skin. Didn’t even want to leave the house in the end. My hopes were pinned the reversal, but the surgeon then told me that it wasn’t just a simple reversal, I needed a Jpouch and that would impact my fertility. Mind blown at that point! Long story short, I had my Jpouch built the year after the first surgery, and the Jpouch connected the year after that. This was all between 2007 and 2009. I didn’t have the internet in my pocket to learn about my condition or to talk to others. I was a mess. It sounds like your journey to positivity and better health began much faster than mine. I had chronic pouchitis, lots of meds and symptoms etc, and eventually, I exploded with rage about the lack of understanding, and wrote my first ever awareness post on Facebook in 2014. That was when my journey began, 7 years after my initial diagnosis and surgery. I formed a group, created an awareness campaign, and got to “meet” lots of people living their best life with a stoma. That was great timing, because when I then needed another emergency surgery in 2015, and I woke with another stoma, I thought, maybe… Just maybe, I could cope. I had that one reversed later that year, but in 2018 I got my current, permanent ileostomy. It’s been quite the journey, and learning opportunity! I’ve got secondary fibromyalgia too, but I do my best to look after myself, physically and mentally. I’m definitely not what anyone would call fit, but I swim twice a week, do yoga every day, and walk my dogs every morning. I only have people in my life who bring me joy, and I absolutely love gardening and eating my home grown veg 🥰 I’m 100% a better and more mindful person because of my journey. Sounds like you are too 🙌 - Sahara (team member)