Traveling with a Stoma Bag: Everything You Need to Know
We’ve been following the beautiful Mollie Pearce since the beginning and were very fortunate to have her model in our first Liberare launch shoot in February. We’ve recently watched Mollie and her partner travel around Greece, so we thought it was great to listen to Mollie's experience with traveling with a Stoma bag. You can follow Mollie here.
From the beginning:
I have had my stoma bag for 2 years this October, it has always been a dream of mine to travel, but I have always felt like it would never be possible before my surgery. I was diagnosed with colitis when I was 11 years old and I was poorly every 6 months, being bounced between steroids or a new treatment, but neither worked. It felt impossible for me to book a holiday. If I had a flare-up I wouldn’t be able to travel, or if I had a flare-up on holiday what would I do? The thought of traveling always felt like a huge step, I couldn’t even leave the house without planning where the nearest toilet would be. My life was completely ruled by the anxiety that surrounded my ulcerative colitis. Traveling was never an option.
Life as a 17-year-old felt so far away. I couldn’t even drive up the road without having a panic attack because there was no toilet next to me. I felt like I couldn’t experience what a normal 17-year-old would do, missing out on drinks, and sleepovers and I was having accidents on top of everything which made my anxiety worse. As I got older, it started affecting me (more so) so much.
I was missing out on life; my life had stopped. It was after my 18th birthday that I went back into the hospital. I have always been so against the surgery, always convinced that I don’t want to be that person. At 18, which all the treatments, steroids and anxiety for years, I felt like my life had already stopped but I always assumed life with a stoma bag would make it stop more. In October 2020 I was so done, at this point I wanted to yank it out myself. I had two options. The hospital had a new treatment that we could try out or I could have the surgery. I just knew I would be back in 6 months after the treatment and at this point, I just wanted it out of me.
It's so hard to explain how you feel after surgery; you have just lost a massive organ, and life doesn’t carry on after that. You have a whole recovery process to intake and the challenges that surround that. It wasn’t just that for me, it was knowing that the removal was a final process. You will never be able to get that back.
You are in so much pain for a long time. Plus for me, I had it during COVID when I was 18 years old and left in a hospital by myself. The night that hit me the hardest was the night before I went home. They don’t let you leave until you can change the bag yourself. I had been so against it for so long and then I had finally made the decision that I wanted it. The acceptance of changing it myself was a huge step. When the nurses changed my bag, I hadn’t wanted to look, but changing it myself means that If I look at it it's actually real. It was the strength in me and the thought of the comfort of my own home that gave me the strength to be able to change it for the first time so I could go home.
The first time I went out, my dad treated me to a McDonald’s (as I had been craving one), and I was just sitting there in the car and I thought, ”I can’t have an accident.” It was the first time in a long time I hadn’t felt anxious. As my confidence grew, I was able to put on clothes and felt like I could wear anything I wanted. Within the first 3 months, I changed massively. I was able to enjoy myself, I started living my life as a 19-year-old.
Were you wary at all with traveling?
I had only been on holiday once prior to going traveling with my partner and for me, I was more worried about the swimming aspect. Because I was born with a limb difference too, I had already tackled the barrier of what people thought of me. Being open about my stoma wasn't quite as hard as I had such a positive reaction about my hand. I felt more confident with my stoma. I found it hard to swim in the water or enjoy myself in the pool as I was always worried my bag would unstick. I remember my partner had convinced me to wear a bikini on the beach and It wasn’t as scary as I thought. A few people would come up to me to ask what it was, someone even asked if it was somewhere that I kept my cigarettes! But I had such a positive reaction that I instantly felt more confident.
The main thing I was worried about when I was traveling was how many bags I needed when I went away. With going in the water, I was concerned about how many I actually needed to bring. When I researched online about ‘traveling with a stoma bag’ I couldn’t find anything online that would help. I follow Mr. Crohn's and Colitis and he made a support band which I purchased for swimming and was a lifesaver. I wore it every day. My thought process was: if my bag falls off, I’ll be supported by the band. So it allowed me to swim with more confidence. Plus, the band made my bags last so much longer! My bags whilst I was away with the support band lasted 2-3 days.
There was one time when I had to change my bag on a ferry and with the language barrier, it was a little difficult to use a disabled toilet. Changing a stoma bag requires me to have a bigger space to change! but when they realized, they were so helpful and understanding!
What's In your bag?
I have an incredibly supportive boyfriend and he offered to take half of my stuff just in case. For traveling for 3 months, I took 30 bags and I had 30 of everything else and I didn’t even use it all!
- 30 of everything (and my boyfriend took double too)
- Coloplast bags. (no other bags work for me!)
- Skin barrier wipes - sensitive skin
- protective seals go around Stoma
- Dry wipes and wet wipes
- Adhesive remover to get the bag off
- Just for convenient disposal.
- Strips go around – These were great for when my bag started coming too loose and needed a little extra stick!
This is what is in my suitcase, but I would take in a backpack 2 of everything for day-to-day use!
What is your go-to for traveling?
I would 100% recommend the bag from Mr. Crohns and Colitis. I would also say to be more prepared than you need to be! I would recommend trialling out which products work best for you before you go off traveling and even trail out going into a swimming pool at home to see what works best for you. Of course, being abroad is completely different to being at home, especially if you are traveling somewhere hot! You sweat a bit more so there's a risk of your bag becoming unstuck.
Most importantly, my go-to is to pack what you want! It doesn’t matter! It's so worth not caring! Like me, I never thought I would be able to travel and have this opportunity, so being away was incredible and you have to just enjoy it as much as you can. Plus, you never know who else is or was going through the same thing. There may have been another girl suffering from colitis that saw my bag, so it's never a bad thing to just enjoy yourself!
When it comes to flying, the Greece flight is only 3-4 hours so it's not a long flight, but I flew to New York, which was the furthest I flew with a Stoma bag. I was a little nervous emptying it on the plane and had been putting it off for ages. Then I was just like "f*ck it, everyone poos.” I just do it a little differently! Ensure you have all your essentials in your hand, luggage, and stop caring what people think!
I also recommend that the person you are traveling with is supportive and knows how to change your stoma. It’s peace of mind knowing you can have a drink and that you are with someone who can also look after you and change your bag if need be! I'm a 20 year old girl, there's no lie that I'm going to drink a bit too much! On a boat trip in Greece, I was a bit too drunk and my boyfriend changed my bag for me.
Can you apply sun lotion with a stoma?
Unfortunately, I have the worst tan lines around where my stoma is!! I would always put my bag on first and wait 20 minutes to ensure it was stuck, when applying sun lotion, I just ensure it didn’t get close to the adhesive. Always put my bag on 30 minutes before I went swimming, so I knew it was stuck down.
Any foods to avoid?
I ate everything I wanted to! I can now enjoy food and drink when I want. Why not take advantage of that? I have been lucky with food, but it completely depends on the person. I never have been into spicy foods, so I can't speak for how that can affect people. Everyone’s body is different.
The positives of having a stoma bag completely outweighs the negatives. I never thought that I would have the opportunity to travel and eat and drink what I wanted without the pain and anxiety. But I traveled Greece, and I’m living my best life!