Is there a cure for IBD?
No, as of right now, there is no cure. Some individuals with ulcerative colitis may be considered “cured” if they have their colon surgically removed, however patients who have undergone a colectomy either have an internal pouch (IPAA) or have an ileostomy bag. Most people with IBD are on some form of medication, but IBD medications are not a “cure”, they are used to induce and maintain remission.
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What is the importance of transition?
Transition from pediatrics means you are growing up and as a result becoming responsible for your own health. It is very important that you know everything going on with your body so that you can make appropriate and informed decisions about your health to make your own quality of life the best that it can be.
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Taking prescribed medication and eating a proper, healthy diet that works for you are both very important. Remember that if you feel well, that doesn’t mean you should stop taking your medications and that no one diet works for everyone with IBD, so it is important to know your triggers to avoid them and develop a diet that works for you.
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How do I know which course of treatment is best for me?
Speak with your Gastroenterologist/IBD Specialist for instruction and advice on proper treatment and care. There are many treatments for IBD because every case is different. Find out what is right for you.
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No, however due to the shared environment and genetics, the family, parents, siblings, and children of someone with IBD all have an increased risk of also having IBD.
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What is the difference between transition and transfer of care?
Transition is the preparation process for being transferred into adult care from child care. There are 3 stages in transition:
- Pre-Transfer of Care – you should become more involved in appointments and try to learn more about your disease and the medications you are taking. It is important that you take more responsibility for yourself.
- Transfer of Care – is the date of your 1st appointment in the adult clinic. This is the formal switch from pediatric care to adult care. After this point, you should only contact the adult clinic with any questions or concerns you may have, so that it is clear who is providing your care.
- Post-Transfer of Care – The final stage comes after your formal transfer of care. Some people may be more ready for this transfer than others. Here, you should be able to answer any questions about your disease, take initiative to ask the doctor any questions you might have, and start to become more comfortable with making your own appointments. It is up to you whether anyone is allowed to join you for an appointment and whether any medical information is shared. Finally, you are responsible to make informed decisions about your care and treatment options. Ultimately, transfer of care is only a small part of the transition process.
When should transfer of care occur?
Simply put, there are four conditions that should be met for transfer of care. It is ideal to transfer when you, your parents, the disease, and the doctors are all ready. You should be ready to speak for yourself and take responsibility for your health before transferring. It is important to understand your disease (what type of IBD do you have, where is it, etc.), medications (what they do, why you take them, and when you need to take them), make informed decisions, and know how to make arrangements to make sure you get the care that you need. Practically, transfer of care takes place around 17-18 and depends on the local hospital policies. At the Stollery Children’s Hospital, patients are only cared for if they are under 17 years (with some exceptions, of course). So usually, the transfer occurs around age 17 but, since every patient and disease is different, this can vary.
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Transition is a process and takes place over a period of time. During this period, you will be put in contact with new, adult-care physicians. This does not mean that you cannot contact your pediatric care provider if you have questions or if something goes wrong. Until your first appointment in the adult clinic, you will still have direct contact with the network you have established from your pediatric care. After, it is important that you only contact the adult clinic with any questions or concerns you may have, so that it is clear who is providing your care.
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