Your Role as Advocate for a Crohn's or Ulcerative Colits Patient

Being a close friend to someone with Crohn's or ulcerative colitis often means playing the role of advocate. There are a number of people who do not understand Crohn's or colitis. I often find myself educating and defending friends who have suffered from Crohn's, colectomies, and colostomies.

Educating mutual friends should only be done to the extent that your friend with Crohn's or ulcerative colitis wants their problem explained. It is a good idea to discuss your friend's disease ahead of time with them, so that the two of you can developed a canned speech to answer any uncomfortable questions which may arise about Crohn's or Colitis.

In the event of an unexpected accident, as a friend, you may be the one who needs to come to their defense. You may have to help create a distraction if there has been an accident and the Crohn's or colitis patient needs to slip away. You may need to come up with a simple explanation as to why they have to step away from their desk, or exit a party, or group event.

When you are the friend of an ulcerative colitis or Crohn's patient you cannot wait to be asked for help in the event of an accident, or emergency. It is your job to learn to read your friend and step up and offer your assistance when needed. The amount of appreciation your friend will extend, to avoid embarrassment and harassing questions is immeasurable.

I have had to follow a colitis patient out of store before because they had an accident. The store's restroom was in one corner of the store. We were in the other. Their bowel started moving and there was nothing they could do. I held a shirt between us to cover what I could, and helped him exit as quickly as possible.

Some have asked me if I was worried about security. No! IBD's are covered under the American's with Disabilities Act. That is all you have to say to store security or personnel in the event of an emergency.

If any place of business declines a request to use a restroom, remind them of the American's with Disabilities Act. Crohn's and ulcerative colitis patients should carry I.D. cards or wear medical bracelets to identify their disease. With proper identification, a Crohn's or colitis patient cannot be denied the use of the nearest restroom.

I have no problem being a vocal advocate when my friends need restroom facilities.

Advocate Concerning Medical Care

There are a number of excellent gastroenterologists in most cities, especially where I live in the metro-Atlanta area. However, every patient isn't a match for every gastroenterologist.

Some patients prefer a doctor who is blunt and to the point. Others prefer a doctor who will take a little more time with them and has a good bedside manner.

The truth is doctors are busier than they have ever been. While your concerns are most important to you, and your concerns are important to your doctor they also have a lot of other patients to see.

If your friend gets into a situation with a doctor who is not listening or who is prescribing the same routine over and over and the Crohn's or ulcerative colitis patient is not getting any better, it may be time to find a new doctor.

Switching doctors is never easy or pleasant. That is why it is your job as the patient's advocate to pay attention to what is transpiring between the doctor and patient.

The goal of treatment is remission of the disease; however, this is not always easily achieved. Many times an ulcerative colitis or Crohn's patient will fail to report a disease to the doctor because they do not want to be hospitalized. It's an advocate's job to speak up.

Sometimes hospitalization is necessary to give the bowels rest and ensure the IBD patient is adequately hydrated. However, when a patient, like I know, has already spent six weeks of the year in the hospital they don't want to go again. It is important to have a patient advocate with the Crohn's or colitis patient to help them work with the doctor to make a rational decision. Someone who goes to the doctor alone can easily come home and tell everyone everything is fine, when they should actually be in the hospital.

Another reason a patient may not mention a flare-up to their doctor is because they do not want to be placed on prednisone. Prednisone is a steroid which helps with inflammation. Some of the side effects are weight gain, moon face, and irritability. Some Crohn's and colitis patients decide to tough it out because they do not want to be placed on prednisone, again.

As long as the patient has given consent for you to attend the exam and/or consultation, HYPA laws do not affect what you may say (They don't affect what you may say, anyway, but it is better to work within them to get information from the doctor). You may have to be the one to tell the doctor the extent and duration of the latest flare-up. It may be up to you to be honest about whether a treatment is working so that the correct treatment is used with a given Crohn's or colitis patient.

The more you learn about Crohn's and colitis, the affect it has on the body, the potential for blockages, and the miserable pain that IBD patients suffer you will want to become an advocate to get your friend to see a doctor, help select a doctor with whom they are comfortable, and make sure the patient is honest about symptoms and whether or not they are taking their medications.

There is a certain barrier of friendship which must be surpassed for you to become involved in treatment and become a patient advocate. If you are not that close with your friend or family member with Crohn's or colitis don't push. IBD patients will allow you to get closer to them the more they trust you.

Why do ulcerative colitis or Crohn's patient need advocates? Because their disease often causes them embarrassment, difficult situations, and the fatigue of dealing with IBD year after year causes them to sometimes want to forego treatment. They need an advocate to help keep communication open, watch for signals of a flare-up, and communicate honestly with their physician.

The goal of treatment is remission of the disease; however, this is not always easily achieved. The Crohn's or colitis advocate may be the one who assists in bringing the doctor and patient to a place of understanding so that Crohn's and colitis can be better controlled.