There have been a lot of times in my decade of living with these diseases, Crohn’s and Colitis, that I had trepidation about traveling, specifically flying, but even driving short or long distances was stressful at times. I have learned a lot over the years about the steps and actions I can take to make traveling less stressful and actually enjoyable. Some of the things seem simple, but by taking many of these little actions, it can make a trip from work or pleasure a great deal more comfortable and hopefully Fun.

When I was first diagnosed with the disease I was concerned with not being able to make it to a bathroom in time. In my experience, my body never seemed to fail me when I was in a social situation or surrounded by a public audience. I recommend that you always carry a spare outfit with you, including all necessities. Clothes that are easy to slip on if you are in the car or a plane bathroom. I like to carry a dress with me.

I think the most helpful coping technique is to be aware of what you are eating. Make good food choices during the time you are traveling. I am a fan of Food Supplement bars or drink supplements like Ensure and Drink Chia or G2 for hydration. They will give you the calories you need to maintain your energy levels.

I would stay away from raw fruits and vegetables while traveling if you have any urgency issues or frequent bowel movements.

I think another important part of traveling is making sure you are strategic with your seat location and bag location. Because Crohn’s is protected by the ADA, you can board planes early and ensure that your bag with your supplies and change of clothes make it on board. I also recommend letting the flight attendant know you have some health issues, so you might be in and out of your seat frequently. I try to always choose an aisle seat.

When traveling, it is very important that you remember to carry all medication in a labeled bottle, and that you have enough medication with you, so that you will not have to miss any doses while you are on your trip. I have found it helpful to even carry a few items that aren’t always a necessity, but can be helpful to ease the occasional uncomfortable moment. Ibuprofen, Tylenol, Gas-X, Antacids, and my prescription medications are always with me, with an extra few days supply in case my plans change. I never want to be stressed if my plane is late or I want to extend my trip.

Finally, I recommend to always give yourself plenty of time during your travels, so that you don’t have to be concerned about taking the time to go to the bathroom, stop for food, parking, ensure you haven’t forgotten anything. I hope some of these planning strategies are helpful to you for your future travels. crohn’s disease, crohns, colitis, ulcerative colitis, uc, uc and crohns

There are recent improvements in Stem Cell research. It might be able to help with Fistula repairs in IBD Patients.

It is important to know all of the drug therapy options that exist for Crohn’s and UC patients today. Make sure you are asking your physicians about their experience and preference with drug therapies such as: Remicade, Humira, Stelara, and Cimzia. There are also dual therapies. The above in conjunction with Imuran, 6MP, purinethol, or methotrexate. This is just a few therapies out there. It is important that you talk to your doctor to see what might work best for you.

Our preference has never been to be treated with long term steroid use because of the side effects.

Be your own patient advocate. Talk to your physician about the various drug therapy options.

Patient Advocate

When dealing with Crohn’s and Colitis, having a Patient advocate is very important and I have been blessed to not only have a twin sister to support me, but other family members, friends, and even Nurse Case managers from UHC(my health insurance company) and pharmacists that have helped me take an active role in my healthcare.

These diseases, Crohns and Colitis, can be very difficult to manage because there are so many moving pieces to remember, take into consideration and react to during the initial diagnosis and ongoing management of the disease. We recommend always bringing someone with you on your office visits or testing. These are difficult diseases with difficult decisions, so it is nice to have another set of ears there listening for you.

A little trick my mom taught me – always position someone in front of the door after the doctor walks into the room. It is important to come prepared to your appointments. Have your list of questions ready to be asked, and then make sure you get them all addressed before your human barricade steps away from the door. It is very difficult for a doctor to slip in and out of the room if someone is blocking the door. Bring a pen or Ipad, so that you or the person with you can take good notes and ask all of your questions.

It is important to have a Voice in your treatment plans, and by having someone with you or that you can ask questions to other than your physician or their staff can be very important. Do not be afraid to ask for help from the people who love you, it is beneficial to have someone you can lean on. Don’t take for granted the people who care about you and their desire to see you well and to be able to help you in some way. They can feel as helpless as you when the disease is making you miserable because they can’t stop your pain or sadness, so by letting them take part in your care plan, you might be helping them as well.

I think it is even more important to have someone by your side whenever possible during a hospital stay. It is nice to have the distraction of someone there to talk to, watch TV with or even walk around the floor once you are up and moving. They can also be another set of eyes and ears during your hospital stay to ensure that you are getting the right medication, quick response times by the nurses, and all of your questions answered when the doctors/fellows/interns/nurses come into the room during your hospital stay.

You can also be your own Patient Advocate. It is important to ask questions, understand your options and make sure that you are comfortable and comprehending the information and directions that are being asked and told to you. I like to repeat the question and provide a response. I also like to make them write down all directions for prescription uses, drug therapies and surgical procedures. The Drug therapies associated with these disease can be complicated, and you usually need to monitor your kidney or liver functions during your use of the medications. You need to make sure to have a conversation about any drug interactions with the different therapies you are using, as well as the type of food or alcohol you should not be using when you are on the medication.

For any surgical procedures having someone there to support you during the pre-and post operative time periods can be very important. You need to make sure you and your Patient Advocate understand the the procedure and the impact it will have on you; including the length of time in the hospital, recovery timeframe in and out of the hospital, potential complications and what to expect while in the hospital with food, activity level and medications.

You are the most important person in your healthcare plan. Take action and take the steps necessary to feel comfortable with the path you are traveling to a better life.

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