I was diagnosed in 2009 at the age of 40. An early routine colonoscopy due to family history was the only reason for the detection. After chemotherapy combined with radiation and surgery to remove the tumor and resect (LAR), I was told I would have a “new normal”. I had no idea that meant all of the symptoms listed above in this booklet! I lived for years with little advice or answers from my doctor regarding my sometimes unbearable symptoms. My surgeon seemed surprised that I was having such severe issues (considering my tumor was high up). I researched online and found very little in the first few years.
I will never forget the first time that I did not make it to the bathroom. I was out to dinner and on my way home, I was mortified and thought my life was over. Thanks to a very supporting and loving husband, some much needed lifestyle changes, and a ginormous faith in God, I slowly began to see improvement. Thankfully, I was always able to figure out how to live my life; work, travel and exercise, although I still had many things to learn about management of symptoms. In 2014, while still searching the internet.
I began to find information about something called LARS, a syndrome caused by the surgery I had. That was my first glimmer of hope. In 2017, I decided that I would start an online Facebook Group page to see if I could connect with others who were living with the condition. I was amazed at how many people quickly joined this group and also how quickly I was learning from others about similarities and differences with symptoms and remedies for LARS. The best thing that I realized was that my heart was full and I was no longer alone in my journey. I decided right around the same time I started that online community that I wanted to offer something in writing to doctors and other patients. I realized once I began writing this that the patient to patient connection was the most important resource, and doctors were only a reference for us to seek medical advice. We are the experts in LARS. We can also be the educators and voice on behalf of those living with LARS worldwide. I hope you find this guide useful. I brought my friend Joe into the project when I saw his amazing ability to lay out technical advice on enemas and other detailed therapies. He is an engineer, he is GOOD at it!
The therapies and management that work for me are daily imodium and psyllium husk fiber supplements, regular exercise and a low carb healthy diet, regular warm water enemas and prayer and meditation. I still avoid red meat and anything with skins because they still give me pain and gas!
I live in New Hampshire, USA, with my husband, adult son, two cats and a granddog. I work a full time job as a Cooperative Housing Specialist, which requires a lot of car travel and client meetings. I have a can-do attitude and plan to live my life to the fullest; working, traveling and not letting LARS slow me down one bit! Feel free to email me with any thoughts, comments or suggestions at email@example.com
I received my rectal cancer diagnosis in May, 2016 and have been living with LARS June 2017.
Like many others that have gone through this experience, my initial reaction to the cancer diagnosis was a silent shock followed by a mental struggle to understand the scope of this news and coming to grips with how this would affect my life and my family. Up until my diagnosis, I had a vibrant work and family lifestyle but upon hearing the “news”, all of that appeared to be in jeopardy.
But once I decided that I would face the treatments with all of my strength, I endured and accepted the surgeries and chemo treatments despite the pain, discomfort, and struggles demanded on me and my loved ones. However nothing prepared me for the challenge faced once my ostomy reversal was completed…… the highly skilled and wonderful doctors and healthcare professionals that attended my treatments didn’t advise me of what was to come and I had no other immediate resources to help understand this thing that I would eventually learn, was called LARS.
The next 6 months after reversal was a period of significant confusion and hardship trying to cope with work and interacting with friends and family as LARS continuously invaded my mind. I needed to think about the location of the nearest toilet, how to excuse myself from important meetings, decide whether I was able to leave my home, what I could or couldn’t eat and very importantly, whether I could travel which constituted a significant component of my work responsibilities. Everything that I was capable of doing before now seemed to be nearly impossible and this was not a situation that I felt was acceptable to me.
After an exhaustive search for answers and interacting with some truly wonderful people like Jeanee, I found that several of the strategies listed in this guide, including mindfulness training, exercising, low-dose loperamide and regular warm-water enemas, have had a dramatic and positive affect. With daily focus and care, I’ve been able to resume normal work and life activities. Life is great once gain.