In Preparing For Stoma Surgery Part 1, I talked about the practical stuff, like surgery prep and what to pack. This blog focuses on mental preparation; answering all those questions you might have. I hope it will help settle some of the concerns and worries that are common for people to have who are due ostomy surgery.
It’s totally normal to be apprehensive, overwhelmed, and even scared about what’s to come. It’s also totally normal to not want it to happen. It’s a tough thing to go through. I know from personal experience how daunting the whole thing is. It’s normal to feel a huge range of emotions. Even with my last stoma, which I was actually really ready for, I still experienced lots of ups and downs whilst waiting for the surgery date to arrive. Some days, I was totally up; excited and ready, and just looking forward to being able to get my life back and experience things again. Other days, I was terrified at the prospect of having a bag for life and I’d feel like crying my eyes out. There is NOTHING that you can feel that isn’t normal! I wrote about how I felt when I found out that I needed a stoma in a previous blog.
I’ve compiled a list of resources.
There’s a fun blog I’d like to share with you first. I was shocked when I found out that we aren’t all emptying our ostomy bags in the same way. I even did a poll about it! See Ostomy bags! How are you emptying yours?
What bag suits you best is a very individual thing, so once your stoma site is all healed, it’s worth ordering some samples from different manufacturers to see which one makes you feel the most comfortable and secure. Let your stoma nurse know what you’re trying or ask them to order the samples for you.
People often wonder what they will be able to wear when they have an ostomy bag to consider. I wrote, What can I wear with an ostomy bag?, to share my experiences, and I’ve also included links to multiple specialist underwear and clothing manufacturers.
One of the major anxieties ostomates can experience is emptying in public bathrooms. Here, I share my top tips for covering odour and noise (the Velcro kind).
Bathing and showering with a stoma is also a very common initial query for new ostomates.
Mental Health
Looking after your mental health is just as important as looking after your physical health after surgery. There are many elements that could be involved in mental health decline, so I’ve tried to share some resources for a few of those.
It’s normal to struggle with being uncomfortable in your own body. I wrote about grieving for mine as part of Fittleworth’s “I’m still me” project, which is also worth a look! The bag and my scars all made it difficult for me to accept my new body, BUT, I did get there in the end. I also wrote about the fact that I don’t always like my stoma, and that’s OK!
In good company focuses on isolation, which is not that uncommon after stoma surgery. I wrote about my own experiences; Sustaining friendships has been more difficult due to chronic illness and Feeling lonely is more normal than you think.
I wrote a special mental health awareness week, ostomy edition too!
Hopefully, you can learn a little from my experience. I actually got to a point where I regretted not having my permanent stoma sooner, which I never imagined would be the case!
Food and drink
People often wonder what they will be able to eat following surgery. Usually, the first 6 weeks after surgery will be a bland diet to give the intestine time to heal. After that, it’s time to start introducing additional foods – with the go-ahead from your surgeon or stoma nurse. There is no one-size-fits-all guide to what people with a stoma can eat. It’s a very personal thing. I always try a food three times, a good few weeks apart if I don’t seem to tolerate it well initially. Fittleworth has a fab guide called Ostomates Kitchen, full of information and even some recipes for you to try! I wrote about how different foods affect my ostomy output, which might also be interesting to take a look at!
Dehydration can be a crippling problem if we don’t take extra care to stay hydrated! You might find that plain water just doesn’t cut it anymore. You might just be able to introduce more salt into your diet, or you might need to drink an oral rehydration solution to level your electrolytes. Chat to your healthcare team if you’re concerned!
Eating out with an ostomy is one of those firsts that might be a source of concern.
Exercise
I previously wrote about my experience of pre and post-stoma surgery fitness, and how and why I got back into exercise after stoma surgery. Parastomal hernia prevention is also worth a look while we’re on the subject!
Fittleworth has a great guide which was created with Fittleworth’s clinical nursing team and qualified physiotherapists. The Simple Steps guide has been devised to help you look after your physical health before and after surgery and is designed to cater to all fitness levels. Check it out now for advice on things you can do pre-surgery to prepare your body.
Many people assume that swimming is off-limits when you have a stoma too, but that’s not the case!
Again, hydration needs to be considered if you’re sweating during exercise!
Relationships
Romantic and sexual relationships can feel incredibly daunting, whether you already have a partner, or you’re worried about dating. If you’re worried, take a look at Sex after stoma surgery.
I shared some blogs in the mental health section that focus on friendships, but for ease, I will pop those in again here:
Sustaining friendships has been more difficult due to chronic illness
Feeling lonely is more normal than you think.
Holidays
Travel can be a big source of anxiety for ostomates. Hopefully, these tips and considerations will help you feel a little more confident on your journey, and when you’re there!
Hot weather, whether you’re at home or abroad might cause some issues with your ostomy bag. The community shared some tips with me for dealing with some of those! AGAIN, Hydration levels must be considered!
Experiences
I’ve also written a few blogs about different things I have done since having my stoma, such as eating out, going to theme parks, and enjoying the festive season with a stoma.
Support
You might also feel like you need additional support from people who have lived it. If that’s the case, pop on over to Fittleworth’s private Facebook group for ostomates.
About the advice and opinions of our bloggers
We hope you enjoyed this article from our guest blogger. They are expressing their views or knowledge on a topic because of their experience & background. Some of the opinions expressed may not reflect the views of Fittleworth or your NHS professional.
It goes without saying, but this is not clinical advice. Each person will have an individual set of medical factors to consider. So please do not make significant changes to your diet, exercise, or treatments before consulting with an NHS professional.
Sahara was admitted to the hospital and diagnosed with Ulcerative Colitis at the age of 19, after just two weeks of being incredibly unwell. One week later, she had emergency surgery to remove her colon and rectum and had her first ileostomy. A turbulent journey followed; a multitude of treatments, complications, seven surgeries, a failed J-Pouch, and three ileostomies later, she is living with a permanent stoma and is a pro-active IBD and ostomy advocate.
Sahara joined the online IBD and ostomy community in 2014, and it very quickly became apparent to her that whilst awareness is important, even more important than that is providing support to others as they navigate the stormy waters of life with IBD, or an ostomy.
She runs #IBDSuperHeroes fundraising and awareness campaign, and the Facebook support group. She is a blogger for InflammatortyBowelDisease.net and an IBD Patient Consultant for merakoi – bridging the gap between patients and healthcare. She gets involved with research whenever she can, and is a volunteer for Cure Crohn’s Colitis, where she donates her time and expertise in social media marketing and content creation.