You need an ostomy. Now what? 5 Top Tips for not losing your mind (or relocating it quickly) after you wake up with a stoma.

I've had an ostomy for about two years so I'm still a bit of a newbie. I was a student when I was told I needed an ileostomy, and it wasn't the most convenient obstacle Crohn's disease has thrown at me. It was a rocky start, and honestly didn't think I'd ever adjust at first. I was 29 years old, didn't know a soul in the town in which I had just moved, lived by myself, my family was in a different province, and I was terrified. Whether by sheer Newfoundlander stubbornness or, more likely, through a fantastic support system from my family back home and my found-family here in Nova Scotia, things got better. They keep getting better actually, and I am thankful every day for the life I've been privileged to lead since receiving my stoma, Mona. 

During recovery, there were definitely times when I thought I was going to lose my mind. Below are some of my top tips for mental recovery and adapting to life with your new stoma pal.

 

1. Support people:

A great support network is so important to recovery and living with a stoma afterwards. I was fortunate enough that my mother was able to travel to Nova Scotia to support me while I recovered. She listened to my emotional breakdowns, did my laundry, cooked me food, chauffeured me to my classes, and did a great job of treating me like I hadn't changed. A great friend can make all the difference too, I was a university student when I had my surgery and I had a friend who would laugh with me when my stoma farted during classes, and helped me find the humour in my situation (a healthy appreciation of poo/fart humour is beneficial). I also have a bag-sister in arms, who has been with me pretty much since day one, and we now co-ordinate a local support group together. I'm sure Blanca will make an appearance on this blog in the coming months, she's probably the most selfless human I've ever encountered. Connecting with people who have ostomies cannot be overstated. We're a tight bunch, and we look out for each other. We'd love to have you.

Sometimes with a massive change, we can close ourselves off to people and things. Not everyone is going to go on the internet and open up their lives to strangers, but finding a few key people that you can be yourself with and open yourself up to will help normalize living with an ostomy. It also helps reinforce that you deserve to live a full, complex, and rewarding life, just like anyone else. Most people in your life will be supportive, because the people who love you want you to be healthy and happy. They will forget about your stoma before you start to (and believe me, once you get back to your life and adjust to your new pal, you'll forget about it more often than not). My cat is still a little puzzled by the bag, but she uses it as a pillow sometimes, so I think she approves as well. 

 

2. Get the information you need from reliable sources

A lot of people will say some strange and wonderful things online, but that is based off their personal experience. Don't let people sell you ideas about magic potions to cleanse your body of toxins or anything. Your NSWOC is there to answer questions, and they are the best people to consult with about day-to-day issues. Your surgeon, GP, and other specialists (like gastroenterologist or urologist) can answer medical questions. Consult a registered dietitian about your diet. Look to reliable online sources for opinions and product reviews, but keep in mind that people online are usually not experts, but they are great to get some perspective about living with your stoma. I personally recommend checking out veganostomy.ca and Hannah Witton on Youtube.

 

3. Keep in mind that recovery is temporary

You may feel uncomfortable and unsure of what lies ahead but as you adjust to your stoma, things settle, and you will get back to yourself. I got my stoma in 2017 and the first six months were a little rocky, but as I'm closing on my 2 year stomaversary, I am thrilled with the life I have now, I'm more confident in myself and my body than I've ever been before, and I feel more drive and passion for my life and career goals than I did before my stoma. 

Life is different than it was before, but I am spending a lot less time at home in bed or in hospital, and much more of my time out living my life. Everyone's recovery will go differently, and you'll definitely encounter challenges along the way. You may need time to be upset and ask tough questions about how you ended up on this road, and it's totally ok to be a mess for a while. I was a basket case for the first couple months; out of my mind, thought my life was over. After I adjusted, me and my stoma nurse were tearing up together in the exam room because I was doing so well. Recovery is the rockiest part. Don't disregard your mental recovery while your body heals. If you need help processing what you're going through, talk to someone you can trust, or seek out a professional that can support you through it.

 

4. Keep doing what you've been doing

After recovery, go back to your career, school, friends, hobbies, etc. Tell you surgeon and NSWOC what you want to get back to, and they will advise you of any modifications you may need to make. Ostomates can be just as active as everyone else. You may need to work up to doing something, increasing difficulty as you get stronger. Whether that involves driving, getting back to work, or improving your physical fitness, you will get there. 

I do more physical activity now than I ever have, because I'm well enough to go for a jog and do yoga, whereas before my surgery, I was lucky to make it out of bed every day. For me, my stoma has a tendency to prolapse when I strain my abdomen a lot, so I wear a support belt when I'm at work because I do a lot of lifting, bending, and walking. I also wear it when I do yoga or go for a jog. My NSWOC helped me figure out what was right for my particular case, and my surgeon and gastroenterologist gave me some basic guidelines to follow when exercising to prevent getting a hernia.

 

5. Fall in love with food again

I'm a foodie, and am currently in the process of becoming a registered dietitian, so food is really important to me. I have Crohn's disease, and it's a pretty aggressive case. I didn't eat solid food for months before my surgery. For years before that, I was in a constant flare-up, starving myself all day to make it through work or classes, and then eating when I got home, because I could lay down when the pain came. When I had my surgery, I was so malnourished that I had lost most of my muscle mass and had developed a fatty liver from the rapid weight loss. The surgery saved my life.

One of the reasons I think of my ostomy as a gift is that it enabled me to eat food again. During recovery, I stuck to really soft foods and followed the low-fibre ileostomy diet. Once I was healed internally, I slowly started expanding my diet, trying tons of new foods. I now enjoy eating basically anything besides corn (my nemesis to this day). I started experimenting with different ingredients and cooking styles, and have come to think of supper as a sacred thing. Falling in love with a variety of foods made me treasure my meal times, and the years I spent unable to eat anything more complicated than mashed potatoes allowed me to truly appreciate every bite I take now.  

So those are my tips for staying sane-ish after stoma surgery. Life will be really different at first, but if you listen to your body and take care of your mind, you'll come out the other end, none the worse for wear. The people who walk with you through the experience will be with you for life. I hope they like poo jokes.

Until next time friends,

Heather ^_^


Brian Jeffcock