Having surgery for ulcerative colitis comes with a lot of unknowns. J-pouch surgery in particular causes worry, which is understandable. However, it’s important to know that most of the time, this surgery is successful and people go on to live well.
Having j-pouch surgery for me has meant I am able to do a lot of things that I could never have done with ulcerative colitis. That includes hiking, camping, and white water rafting. Part of these types of trips include time without running water or a flushing toilet. And a day out on a raft in the water means no bathroom access at all.
I realized that some people may think outdoor activities aren’t a reality after surgery. But they’re absolutely possible, as well as many more adventures. For that reason, I thought I’d lay out how I plan before going on outdoor activities.
However, an an all-day activity does take planning. It’s not like being a person with a functional colon, who probably doesn’t have to think about it much, if at all.
People who live with j-pouches pass stool more frequently: usually several times a day. But this is only an issue if you don’t have access to a bathroom.
Getting ready for travel begins long before the trip. There are things that take time to learn about a body without a colon, and then there are the things that need to be focused on in the weeks and days ahead of time. As an owner of a 20+ year old j-pouch, here are a few of the things that I think about and plan for when I’m traveling.
Sleep might be different while traveling — usually this means getting less sleep, or less quality sleep, for a variety of reasons. We can’t store up sleep, but we can try to prioritize it in the days before a trip. Spending a few days, or even a full week if you can manage it, focused on getting quality sleep will help.
Coming home, it’s the same situation: plan to spend a few days focused on sleep. It might not be possible to come home from a trip and expect to get a lot accomplished until rest has been prioritized. I give myself at least one “day off” after coming home from a trip, and try not to plan any meetings or have any deadlines that day.
For a day away from a bathroom for a person with a j-pouch, some of the planning includes thinking about diet in the days before travel. Every person with a j-pouch will have a different relationship with food. What’s important to understand is which foods are neutral and won’t cause either a slow down or a speed up of digestion. Eating those foods in the days beforehand can help avoid any surprises while traveling.
To be away from a bathroom for a day, I start planning a few days ahead of time. I avoid anything that might trigger digestive symptoms: fried foods, alcohol, fatty foods, spicy foods, or even too much coffee. In the 12 to 24 hours before I know I won’t have bathroom access, I focus on taking in some high quality protein and avoiding carbs or roughage.
For my day out on the water, I had one cup of coffee several hours before we left and ate a light breakfast. I also relied on two tricks many people who have had surgery use: bananas and gummy bears (or fruit snacks). A banana and/or a few gummy bears usually slow things down enough that you can get away with avoiding the bathroom for a while.
Some people with a j-pouch or an ostomy also use anti-diarrhea medications to manage bathroom trips during the day. It’s important to know how these medications affect you and to work with your doctor to learn what the right dose is to manage output while traveling.
People with a j-pouch need to be careful to stay hydrated. I have a mature j-pouch, so I don’t get dehydrated as easily as someone who is closer to their surgery date. So, I can go a little longer without drinking water.
But, along with sleep and food, I focus on hydration in the days before traveling. That means drinking plenty of water or other fluids leading up to a trip. That puts me in the best possible position to not have to worry as much about hydration for a day trip.
Dehydration can happen really quickly, so there’s a limit to being able to do this. You need to understand how fast you personally can get dehydrated and the best way to rehydrate. That could mean having some products like oral rehydration or sports drinks on hand, rather than plain water.
This is where things can get a bit trickier. Managing a medication schedule for a day may not be too difficult, depending on the meds. If possible, it’s a good idea to schedule travel around medications. For those who receive infusions or injections, planning a trip in that “sweet spot” between doses may be the best idea.
For medications that are taken every day, or for topical medications, it might help to talk to a doctor and/or a pharmacist. There could be a way to work out the medication schedule to be able to go longer between doses, if needed. For a day or two, it’s likely that there is a way to work around it.
The spongiest and most difficult part of traveling is in approaching it mentally. Sometimes our bodies are ready, but our mind isn’t. Focusing on mental health is important in chronic illness. Travel takes a certain amount of zen at times, because unexpected things happen.
When stress levels rise, or things don’t go according to plan, having some kind of tool or a plan to fall back on is important. What that is will look different for everyone, but planning for it is going to be something that has to happen long before the trip.
Putting long-term stress reduction techniques into place and learning to use some short-term coping mechanisms can help make travel easier. Finding the right balance may take time, but it will happen. Enjoying a trip is what’s important, so picking the right time, when you’re ready, is going to be key.
For myself, that means checking in with my anxiety and being realistic about what might and might not happen. Just because I can imagine a worst-case scenario doesn’t mean it is at all likely to happen. I plan for the things that I can anticipate, and I try to let go of the other “what if” worries.
Your j-pouch journey isn’t one that you have to take alone. Your medical team, whether that’s a colorectal surgeon and/or a gastroenterologist, a primary care physician, a nurse, a pharmacist, a mental health provider, and other specialists, are there to help.
I know our providers want us to live healthy lives filled with experiences and travel is one of those. Reach out to them and let them know your plans. They can help you make the tweaks you need to be successful.
What’s more, there’s an entire community of patients who are living life after surgery and are only too happy to share their ideas and their tips. Search social media for tags like #jpouch, #jpouchlife, or #jpouchsurgery to find others living life after surgery.
My tips for enjoying short trips with a j-pouch are:
- Get enough sleep in the days before traveling
- Eat light on travel days
- Manage hydration carefully
- Plan for medication changes, if needed
- Keep on top of your mental health