Connie Pickett: Living with LARs

The whole cancer experience really challenged me – mentally, physically, emotionally, and spiritually. Through it all I’ve worked hard to keep a positive mindset, rooted in hope and gratitude. But this phase of my recovery really stripped me to my core. As much as I was looking forward to the reversal of my ostomy, I wasn’t fully prepared for the new set of obstacles I now faced.

I was diagnosed with stage 3 colorectal cancer in October 2018. At that time, my twins were 10 and my eldest was 13. I was following my passion as an actor/artist after having worked in the financial services industry for years. As a busy mom/wife, my life was hectic – getting kids organized, driving to activities all over the city, volunteering, and working. That December the rollercoaster ride of cancer treatments began: 5 weeks of daily chemotherapy with radiation, surgery to remove the tumor (and put in an ostomy), another 5 months of chemo, surgeries to fix a stricture, and finally the reversal of my ostomy.

I was so excited to finally have that reversal surgery on September 28, 2020 and start living a somewhat “normal” life again. I had grown so much from everything I had went through that I changed careers to become a counsellor so I can help others through this journey. While I did not expect to be a 100% after reversal, the intensity of recovery and the impact on my quality of life has been tough. I know I’ll get there it’s just a matter of time and a lot of trial and error.

Can you explain what LARS is?

It’s not something I recall anyone naming for me, in fact I had to do some research to even know there was a name for what I was experiencing. Those symptoms are called LARS – Low Anterior Resection Syndrome. It was explained to me that after having resection or removal of the rectum, the colon now must learn how to work like a rectum – and that can take time.

What’s experienced with LARS and how has it impacted your quality of life?

In my experience, LARS causes me to be dependant on my washroom. So planning is key for me. If I want to go out with friends or a walk, I must know exactly where the washrooms are. LARS can just come on unexpectedly, no warning, and I’m often sprinting “like an Olympian” for the closest white throne. It affects my social life, work, and intimacy with my partner. At 10 months out I’m improving, often can manipulate my diet with medications to have a day without symptoms, but it comes at a cost the next day.

How important is nutrition with LARS?

Very. I worked with a nutritionist and tried a very low-fiber diet. But it’s not meant for long term as you need more nutrients in your diet. I now follow a low FODMAP / SIBO diet while still experimenting with different foods. I took out coffee but then noticed it didn’t make a difference, though for some it does. I do know I cannot eat any type of lettuce yet, and I avoid any gas causing foods like cabbage and most legumes. Everyone is different so it’s important to keep a food journal to record any food triggers and slowing try new foods when you know you’ll be home. And if possible, see a nutritionist.

What other things are you doing to help you manage your symptoms?

Besides diet, it’s important to exercise as best you can – I walk every day and it helps. I also have a mini trampoline to help with internal muscle toning. I go to Pelvic Floor Therapy with BioFeedback once a month, drink lots of water, use antidiarrhoeal meds when needed, sitz baths with Epson salts, live with Metamucil, manage stress with mediation, journaling, mindfulness, and I dance daily. Because I still believe laughter really is the best medicine – put on a funny movie and see how great it is for stress.

What would have helped you prepare?

I needed a fact sheet from the hospital on managing those first several weeks especially – diet, materials needed (medications/ointments, wipes) basically how to care for myself and what exactly to expect. Our bodies weren’t meant to go 20x + a day, so it can cause a lot of discomfort and pain.

What advice would you give to others going through this experience or about to?

Know you’re not alone and get a good support system in place. It can feel incredibly overwhelming, degrading, frustrating and extremely lonely. There are many times I’ve just sat in the washroom crying wishing for this to be over. This subject is hard to talk about it, it’s not only embarrassing, but I felt shame for complaining because I’m cancer free and alive. We have to be our own advocate – asking for help doesn’t mean you’re not grateful, you just need support through this very difficult phase. Reach out to your surgeon, your GP, be a part of online support groups like Colontown.org, Canadian Cancer Society’s Online Community, Facebook LARS groups, and peer groups like the one I’m in with Colorectal Cancer Canada.

My emotional/mental health was definitely challenged – so I think it’s important to have a coach/counsellor in your court to help you through this. There are so many things we don’t talk about through this journey that we need to. And let’s face it, while I know they love me, my family is tired of me talking about this and it’s been a long process for them, too.