Questions Answered By Expert
Eva Szigethy, MD, PhD
Professor of Psychiatry, Medicine & Pediatrics
Director, Behavioral Health with the Chief Medical and Scientific Officer
Founder, Visceral Inflammation & Pain (VIP) Center
A: First for any type of pain, you want to check with your gastroenterologist to make sure that it is not due to inflammation and other medical causes. The most natural pain relief options are those that do not use medications- brain techniques such as relaxation, meditation and increasing enjoyable activity. For natural pain options, omega 3 fatty acids have been studied but best to check with your doctor. hide answer
A: You are correct- there is a growing list of serious problems caused by opioids including tolerance (needing higher and higher dose to treat the pain), brain effects, increased risk of infection and increased risk of death. In vulnerable patients, they can lead to addiction. With chronic use, they can lead to gastrointestinal problems such as constipation and obstruction. There are patients who do well with low dose opioids and careful monitoring but given the risks, it is important to be followed by a pain specialist and to consider other non-opioid options when possible. hide answer
A: There are scientific studies showing safety and tolerability of rapid infusions of Remicade. I am not aware of any patient-focused literature discussing this topic. I would recommend bringing your questions to your daughter's physician to discuss further with him or her. This is not yet typically standard of care at most hospitals, but is being offered at more and more infusion clinics. hide answer
A: While the decision to have j-pouch surgery is ultimately left for the gastroenterology and surgical experts, the CCFA is a wonderful resource to connect with other patients/parents with similar experiences. Speaking with the treating surgeon and IBD gastroenterologist may also provide patients/parents to exchange experiential stories. While IBD is a challenging disease at any age, younger children can often adapt quite well even to surgery, especially when the adults around them are able to make them feel comfortable about themselves. This positive adaptation is likely a result of a still formative self-identity in early years of life which is especially responsive to environmental influences, especially parental reactions. If the child does seem frightened, angry or depressed about having IBD or surgery, a few sessions with a behavioral specialist can be helpful to help teach coping skills often using play therapy techniques. hide answer
A: Fatigue is a very common problem in patients with IBD, both during disease flares but also during times of remission. This fatigue can come with poor sleep, low energy, and depression, if symptoms become severe enough. Sleep disturbance is common in patients with IBD, and there are several potential reasons for this, one of which is that the inflammatory substances in the gut may also have an impact on the brain. Medications used to treat IBD affect sleep, especially steroids. If poor sleep is contributing to the symptoms you describe, there are things you can try to get better sleep. These techniques, sometimes called ‘sleep hygiene,’ include setting a specific schedule and being very consistent in sleep and wake times. People who sleep the best often engage in relaxing activities before bedtime, rather than watching violent TV or movies that can arouse people. It is important to get all of your sleep at one time, and you should avoid napping during the day, especially if you find yourself tossing and turning at night. People are encouraged to avoid alcohol, as this can worsen the quality of sleep and make it less refreshing. When “drive” is low, a jump start is often needed, and the longer you remain ‘stuck in a rut,’ the harder it can be to break out. However, just like bad habits can breed more bad habits, good habits can lead to more good habits and help you to break out of your low motivated ‘funk’. Scheduling your day (and sticking to it!) can be very useful with this, and I would encourage you to detail your activities for the week. Be very specific and build enjoyable things into your schedule (exercise, time with family), as well as things that you have to do (work). The longer you can stick to this routine, the easier things become. Sometimes, low motivation and poor sleep may be signs of depression or other mental illness, so if your symptoms are going on for more than two weeks, it is worth discussing with your physician as you may require more help hide answer