Making Procedures More Manageable
Intro
For many people with IBD, getting used to routine invasive procedures can be very intimidating, especially for those who are afraid of needles or who have never had many medical tests done. It can also be overwhelming to have to suddenly learn the meaning of different test results and figure out how to navigate more frequent medical care than you might be used to. However, there are ways to make these procedures much more manageable, and in time, you will become an expert on the certain types of tests that are most common for IBD!
Needles
For those who are nervous about needles, getting used to frequent blood tests and IV’s can be a huge barrier during the first couple years living with IBD. Most doctors and nurses are understanding about this fear, and it is important to tell the person taking your blood/placing your IV that you are nervous. Many hospitals have child life specialists who can come to your infusion room while getting an IV placed. They can help make the experience much more calm and advocate for you! You can also request different types of numbing substances that can make it almost entirely painless! These can include EMLA cream, which is a numbing ointment that takes approximately twenty minutes to work, or J-tips, which deliver local anesthesia under your skin without using a needle.
Endoscopies
Getting used to frequent colonoscopies and endoscopies can also be nerve-wracking for new patients. It is important to remember that you will be under anesthesia for the procedure, so you will be asleep for the entire time and will not remember anything. The preparation for these procedures is usually the hardest part. However, there are ways to make that easier as well! You can try mixing the preparation medication with different types of drinks to see which one tastes the best, which makes it a lot easier to drink. Adding ice can also be helpful. It is also good to find different types of clear foods (such as gummy bears or jello) that you can eat without messing up the preparation. It is very important that you follow all of your doctor’s recommendations about preparing for the procedure to ensure that it goes smoothly and does not have to be repeated. If possible, take the entire day of preparation off from school or work so that you can relax and and take care of the preparation in privacy.
PICC Lines and Feeding Tube Management
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For people who have procedures that result in longer term medical appliances, such as a PICC line or feeding tube, the impact on your lifestyle may be more significant because you will be living with a medical appliance for an extended period of time. It is extremely helpful to have a support system of family and friends around you who understand what your procedure was for and can help you. There are also other external groups that a patient can take advantage of including CCF (Crohn’s and Colitis Foundation) and their support groups (there are local groups/chapters in each state). Also groups like the PAC, which focus on IBD advocacy allow individuals to redefine how they interact with their IBD.
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A major difference with PICC lines than something like the feeding tube is that it allows for more freedom and the ability to complete treatment at home or while out and about. PICC lines and the process of getting it inserted initially can be nerve wracking, but once a PICC line is inserted it gives patients the ability to not be stuck in the hospital. This is especially liberating around holidays or major life events. PICC lines are also useful and easier to deliver medications during a surgery or to take blood labs. They have minimal care associated with having them as you only need to redress the PICC line every 1 or 2 weeks depending on a schedule decided upon by the team who inserts it.
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Placing a feeding tube every night can be intimidating, especially for the first week or so before your body gets used to it. Many patients find it helpful to drink juice or water through a straw while placing their tube, because it helps it go down more smoothly. It is also helpful to have popsicles and hard candy to suck on while your body gets accustomed to the feeling of having a tube. After a few days, you will get used to the feeling and hardly notice it! If placing the tube every night is too difficult, you can also leave the tube in during the whole day; if you do this, your body will get used to the feeling even faster and you will hardly feel it after a few days. It can be difficult to not be able to eat with your friends and family, but if you talk with them about other ways you can socialize that don’t revolve around food, it will be much easier to get used to!
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