Introduction
People with Crohn's disease or ulcerative colitis are continuously seeking education and support to help them manage their disease. They often find that
dealing with the psychological impact of living with a chronic disease proves to be the greatest challenge. It is not surprising that chronic disease
and its consequences can lead to stress, anxiety, and depression, or can worsen pre–existing emotional problems. Although we know that emotional
distress does not, by itself, cause inflammatory bowel disease (IBD), it is often a reaction to chronic diseases and can lower your tolerance
to pain. This newsletter will address several support strategies that may help you cope with IBD: attending support groups, seeking individual psychotherapy,
or accessing online support alternatives. Whether you are a new patient or have had IBD for years, these options can help you develop
strategies to cope with embarrassing or painful symptoms and manage fears about possible surgeries and unexpected complications that may accompany your illness.
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Support Groups
What is a support group?
A support group is simply a group of people who meet on a regular basis, share common issues, and support one another through their experiences. Many people with IBD find it therapeutic to meet with other people who have the illness. Members typically share a similar diagnosis (or have family members
with similar diagnoses), and the group provides a venue for discussion.
Support groups are as varied as the needs of those who join them. They may be led by a layperson, peer, or a professional, and their focus may be purely
supportive or may also include an educational component. Membership may include only the person with the illness or extend to the family. A group
may be open to new members on an ongoing basis or closed for a certain period of time.
Why do people participate in support groups? How do they benefit?
Support groups have been used for decades to help individuals and family members cope with chronic illness or mental health issues. Although some people
do not feel a need for support beyond their family and friends, others find it helpful to connect with people who are facing similar health–related
challenges. Studies have shown that patients who attend support groups have better health outcomes than do patients who do not.1 Many people
find comfort in knowing that they are not alone and benefit from talking about their experiences in a safe environment. Support groups provide a place
to share coping tips for symptoms and common feelings that accompany chronic illness, like isolation, loneliness, guilt, fear, stigmatization, depression, and hopelessness. These groups may help you to find the motivation you need to take a more active role in your treatment, stick to your treatment
plan, or tap into community resources. Support groups can also be a great place to learn about recent scientific advances and new treatment
options. If you have recently been diagnosed with IBD, it is likely that you will initially do more "taking" than "giving" when you first join a support group. But, after some time, it is likely that you will quickly find that you are also able to help others help themselves, and that can be very
rewarding.
What happens at a typical support group meeting?
Support group meetings usually begin with an icebreaker activity or an opportunity for members to introduce themselves. Each meeting may then focus on
a question or topic, like lifestyle issues, dealing with your doctor, feelings about your treatment, coping strategies, nutrition and diet, surgical
options, or understanding diagnostic tests. On other occasions, the focus of the meeting may be determined by a guest speaker, such as a physician,
a dietitian, or a mental health professional.
You can use the following list of questions to help you decide whether a particular support group might be a good fit for you.
- Can you visit and observe with no obligation to join the group?
- Who are the participants? What is the typical gender and age? Are family members and caregivers included?
- How many people usually attend?
- Is the meeting location convenient?
- What are the meeting dates and times?
- What is the meeting frequency and duration?
- Is there a facilitator or moderator? What is his/her training?
- What is the meeting format? Is the tone formal or informal? Is it patient–directed or presenter–directed?
- Is there a sponsor? Is it a reputable organization?
- Are there any fees for room rental or refreshments?
- What are the rules of operation? Are there ground rules regarding confidentiality, etc.?
- What are the group expectations? Are you expected to make an occasional presentation or find a guest speaker? Do members contact each other socially
or for support between meetings?
- How long has the group existed?
After attending a support group, think about to how it made you feel. You will know that you have found a support group that's a good match for you if
you receive encouragement and support from other group members, you learn helpful information, and your symptoms seem easier to manage. Although most support groups have each member's best interest at heart, some may not. Be wary of a support group that centers around complaining and negativity,
allows a few people to dominate the discussions, or pressures you to purchase a product or service. It is important for you to remember that support
groups are not a substitute for individualized medical management by your physician, and you should discuss any medical information you receive
with your physician.
How to find a support group?
The Crohn's and Colitis Foundation of America (CCFA) has over 40 staffed and volunteer regional chapters and affiliates nationwide. Each year these chapters
hold more than 300 free support groups where people with IBD and their family members can connect to others who are struggling to cope with IBD.
CCFA support groups usually meet monthly or every other month and all CCFA support group facilitators (many of whom may also be psychologists, social workers,
or nurses) are trained volunteers. To find a CCFA support group near you, check their website (http://www.ccfa.org) which
has links to chapters by state.
The United Ostomy Associations of America (UOAA) also organizes self–help groups where people meet to discuss facts about ostomies and share information
about the experience of living with an ostomy. To find a group near you, check the UOAA's website (http://www.uoaa.org/supportgroups.shtml),
which lists affiliated groups.
If the above options are not available in your community, your doctor or someone else with IBD may be able to recommend a support group near you.
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Individual Psychotherapy
What is psychotherapy?
Psychotherapy, which is also sometimes referred to as "talk therapy" or "counseling," involves talking with a trained mental health professional to help
you gain insight into your feelings, change behaviors, resolve problems, or learn how to deal with emotions like stress, grief, loss, fear, and sadness.
It is based on the theory that people can improve their emotional well–being and mental health by talking about their problems with a therapist who, in turn, helps them find better ways to cope, solve problems, and set realistic goals for improvement.
Who benefits from psychotherapy?
Psychotherapy can give you an opportunity to explore some personal issues in an individual setting. If you are not comfortable with the idea of a support
group, but need help coping with your diagnosis or feel you are becoming depressed because of your IBD, psychotherapy may help. In a recent study
of 302 patients with IBD, 20% expressed a need for psychotherapy due to impaired social functioning, anxiety, and worries about the impact of IBD.2
In another study, patients with Crohn's disease participating in 20 hours of basic short–term psychodynamic psychotherapy experienced reduced
hospital days and sick leave days during the follow–up period, when compared to a control group.3
Are there different types of psychotherapists?
Professionals who provide psychotherapy include psychiatrists, clinical psychologists, and licensed clinical social workers. A psychiatrist is a doctor
who has completed medical school, at least one year of internship, and three years of specialized psychiatric residency training. Psychiatrists specialize
in the diagnosis, treatment, and prevention of mental illness. Some psychiatrists provide psychotherapy and others work with a psychologist
or social worker who conducts the therapy while the psychiatrist supervises treatment and provides medical oversight. All psychiatrists are licensed
to prescribe medication.
Clinical psychologists apply psychological principles to the treatment of mental, emotional, and behavioral disorders through a broad range of psychotherapies.
Most have a master's or doctoral degree in psychology and also complete a clinical residency, however each state has different requirements
regarding the educational background necessary for licensure.
Licensed clinical social workers are also trained in psychotherapy. They usually have a master's degree in social work, and their coursework tends to be more hands on and less theoretical than doctorally trained therapists. A licensed clinical social worker can help you deal more effectively with the
psychological and physical stress of living with a chronic illness.
How to find a therapist?
The best way to find a therapist is through referrals. Try asking your physician, others with IBD, or friends and colleagues. You may also want to check
with your health insurance company about referrals or to see if there are any limitations regarding your choices. Health insurance typically covers
the cost for a set number of sessions. If you do not have health insurance, many therapists offer a sliding fee scale based on your income. You
can use the following list of questions to help you choose a psychotherapist who makes you feel safe, comfortable, and at ease.
- How long have they been in practice?
- What is their availability?
- Do they have other patients with IBD or other chronic disease?
- What are their payment policies and fees?
- What is the goal of treatment?
- What therapeutic approach do they use/what is a typical session like?
In addition to possessing the standard skills, it is important that the therapist be genuinely interested in treating patients with IBD. Ideally the therapist
will be familiar with the normal and erratic course of the disease, as well as with the various drug therapies used and the potential complications
that may arise.
What to expect?
Psychotherapy sessions are usually 45 to 60 minutes long and take place in a small office located in a medical clinic, an office building, or sometimes
a private home. The therapist will typically use the first session or two to learn about your situation and issues, and you may be asked to fill out
forms about your physical and emotional health.
During subsequent sessions, your therapist will encourage you to talk about your thoughts, how you are feeling, and what is troubling you. The actual treatment will vary depending on the philosophical affiliation of the therapist. You may find that it's difficult to open about your feelings, or you
may find yourself crying or angry during a session. A good therapist will help you gain the confidence to express yourself and help you cope with any strong feelings that emerge. Over time, you should find that you feel better about yourself and are better able to cope with IBD.
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Online Support – Message Boards and Chat Rooms
What are message boards and chat rooms?
The Internet provides a number of ways to communicate online (i.e., "virtually") with people whose situations are similar to yours. Message boards, which
are also called "discussion boards" or "forums," are like virtual bulletin boards. Participants post messages (called "posts") about specific topics,
such as ulcerative colitis, Crohn's disease, ostomies, parenting children with IBD, etc. Usually, anyone can choose to read some or all of the
messages, but you typically must register to reply to messages or post a new message. The beauty of a message board is that participants don't have
to be online simultaneously. You can post a message one evening and others post responses over the next few days.
Chat rooms operate like message boards, but in real time. There is no delay in the exchange in information, meaning that participants must be online simultaneously.
Chat rooms resemble telephone conversations – when participants log off, the conversation is over. With either message boards
or chat rooms, a moderator may monitor the content to prevent inappropriate posts.
What are the advantages and disadvantages of message boards and chat rooms?
One advantage is that if you are not feeling well enough to leave your house to attend a support group, you can participate on a message board or in a chat room from the comfort of your home. Another advantage is that online support is global and available around the clock, whereas you can attend a support group only if it's scheduled at a place and time that is convenient for you. Finally, if you are uncomfortable sharing information with people
you don't know, message boards and chat rooms allow you to maintain your anonymity.
Although the anonymity found online may be appealing, it can also be a disadvantage, since it is difficult to know if any other participants are being truthful about their identity and what conditions they have. As you feel increasingly comfortable with an online group, you may be inclined to reveal
more information about yourself, but always be careful about sharing your full name, your address, or your phone number with online strangers. Finally,
remember that health–related information you receive online may not be accurate. If you hear something disturbing or that doesn't seem right, discuss it with your doctor.
How to find online support?
The CCFA sponsors message boards called "online forums," which are moderated by CCFA staff. Topic areas include newly diagnosed, emotional wellness, dealing
with surgery, parents and caregivers, women's issues, and men's issues. Anyone can go to www.ccfacommunity.org/Forums.aspx to read what is posted, but you need to register to post comments or questions.
You can find links to other support groups through the following web sites:
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Conclusion
Support groups, psychotherapy, and/or online support can complement the care you receive from your physician. Although none are a substitute for medical
care, they may teach you new coping skills and encourage you to stay on course with your treatment. Opening up to others can be difficult at first,
but you are likely to find that doing so will give you a greater sense of self–esteem and empowerment as you learn to cope and adapt to life
with IBD.
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