Travel with a J pouch

A year ago the thought of driving more than an hour was a horrifying thought. I had to know there would be places to stop in case I had a feeling of urgency. Once that feeling hits I would have maybe 5 minutes at most to find a bathroom. Other times I would only have 30 seconds to find a bathroom. So driving to Ohio from North Carolina to visit my parents was out of the question. Flying was just as bad. I have never used an airplane bathroom. What I know is they are small and have little to no ventilation. Not a good combo for someone who would has an IBD. So I stayed in my little bubble in Raleigh North Carolina. Always 20 minutes from home, and always 4 minutes from a toilet. It wasn’t an exciting life but it worked. That was my life a year ago. Now...It is so much better!

Now I have my J pouch. With the urgency gone, I am able to go out for a few hours and not worry about where the bathrooms are. I didn’t travel the first 4 months. Not because I was afraid to. We just didn’t have anywhere to go, and the kids calendar was full of activities. Our first trip was after my second surgery when my rectum was removed and the J pouch formed. I still had my ileostomy bag. We drove to Myrtle Beach three hours away. We made it just about the whole way to Myrtle Beach. Six months before that I had barely made it home from Wilmington, only 2 hours away. This was huge for me. The whole week was amazing. I was able to swim with my kids, play putt putt, take a walk on the beach every morning, search for seashells, and never wondering if I would have a feeling of urgency, or make it to the bathroom.

Two months later was my take down surgery and the beginning of life with just the J pouch. At first (as with the ileostomy bag), the output is watery and I could only hold it in two hours at a time. As time moved on, my body adjusted and I’m able to control the thickness of my output and “hold it” longer.

This weekend I did a two day, nine hour road trip with Vince to Ohio. Normally when I take the kids to see my parents, we stop about every two hours. Giving the kids bathroom breaks, and wiggle breaks. This trip we had planned to drive at night and spend the night in Beckley WV. There was a nasty winter weather system moving in and the thought of driving in the mountains through it in the dark did not sound like the best idea. We left early and made it to Virginia before it stated to get dark. This is normally when we would take a potty break. There was no way I was going to stop unless Vince said he had to use the bathroom, or I had a feeling of urgency. The fog was thick, it was raining, all I wanted to do was get to Beckley before it started to sleet. We made it without any problems. After I had brought the bags in, I realized I hadn’t once had to use the bathroom! Over four hours of stressful driving and never breaking into a sweat with cramp pains or bursting into tears because I can’t find a place to pull over in the middle of nowhere in the mountains (insert banjo music here). For most people this is not a big deal. For anyone with and IBD...THIS IS AMAZING! The best comparison I have (and only parents will get this) it’s like when your child is going through potty training, and they just get up on their own, go into the bathroom, and wash their hands without any prompts from you for the first time.

We did stop on the second part of the trip  for lunch, but could have made it the whole way again without needing a potty break. So other than being able to sit in a car for 4 hours, what is travel with a J pouch like. It’s very similar to travel with your colon. Many people experience some kind of stress when they are away from home. This can sometimes cause them to be blocked, or need to use the bathroom more. For me it’s more of a consistency issue. I have noticed my output is more watery. Even though I am in my childhood home and don’t feel the stress, it is there. To help my J pouch stay happy I do these things…

1 Increase my Imodium from six to eight or ten. I don’t have any cramps, or gas pain. I just want to make sure I don’t become dehydrated. The

2. Really watch the amount of food I eat in one sitting. I’ve made sure I only eat half of my meal with we eat out. When you only have your small intestines, they fill up quickly.

3. Have wipes and ointment on hand, and an air freshener. When you go a lot, your bum gets raw. Flushable wipes help with the irritation, and Desitin helps to calm down the “my ass is on fire feeling”. The air freshener keeps the embarrassing smells away and your business stays your business.

4. Get a good night's sleep. Normally I have to get up between 5 and 7 in the morning to use the bathroom. Sleep is really important to keep up a healthy immune system. Years ago I talked to my GI team about my sleep concerns and they prescribed me a muscle relaxer that would help with the hidden stress, and help me fall asleep. It is a low dose so I can still get up and function if my kids needed me in the middle of the night, but will help me fall and stay asleep when I need to.

Tomorrow we drive back to North Carolina. We’ll have to go the the whole nine hours but the insecurity is gone. People often ask if I’m happy with my surgery choice, or if given the chance would I do it again. In a heartbeat. I have the whole world back, and I’m no longer stuck in my little (but adorable) Raleigh Bubble.

These are my experiences with my J pouch. As we all know with IBDs, not everyone has the same experience. These posts are to offer hope and encouragement.