This is the fourth in a series of article dealing with Crohn’s and IBD’s. In previous articles we talked about what it means to have Crohn’s or an IBD, the emotional consequences of dealing with Crohn’s, and current treatments.
If you or someone you know has IBS or other symptoms of an IBD, you should seek medical attention from a gastroenterologist.
This is our last article dealing specifically with Crohn’s, although we will examine other IBD’s in future interviews and articles. In this article a Crohn’s patient talks about what to expect from a visit with the gastroenterologist (G.I.).
Q. How should you find a gastroenterologist if you suspect you have an IBD?
A. I would look for a doctor or group of doctors that is associated with the Crohn’s and Colitis Foundation. You can find a listing at ccfa.org.
Not all gastroenterologists know about Crohn’s and how it should be treated. That may seem hard to believe, but it is true. I had a GI doctor hospitalize me for a week and I almost died. They never approached the idea of Crohn’s. I was barely able to make it out of that hospital and find another doctor who knew something about Crohn’s.
I’d recommend that you start by doing your research on Crohn’s websites. Become familiar with people who have similar problems. Find people in your area and find out which doctors they see. Chances are they have made the rounds and may be able to save you a lot of pain and the irritation of finding the right doctor.
You have to be comfortable with your doctor. You must trust your doctor. Treatments vary and some of the medication can be a little frightening. If you are not comfortable you’re your doctor you may not be comfortable with the doctor’s treatment and recommendations.
Q. How can you determine when you have found the right doctor?
A. You know yourself better than anyone else. Find a doctor who will listen to you and not blow you off, or not listen to your concerns, or even hear your symptoms because they have already made a decision as to how to treat you before they ever walked through the door.
When you have a visit, understand that all doctors are busy, but this disease involves a lot of factors and sometimes you may have questions. You need a doctor who is willing to spend time listening to you and addressing your concerns. They should be willing to take the time to explain procedures and/or problems.
Your doctor needs to be available and reachable. If you are having a problem, you should be able to call your doctor. If they take forever to get back to you, mark that as a red flag. You may need another doctor.
I have had to do this. Currently, if I call my doctor’s office my doctor will call me back herself within a few minutes. It is probably difficult for her to break away considering her work load, but she does it.
I think consideration for their patients and knowledge of Crohn’s or your IBD are the two most important factors to look for in a GI doctor.
Q. Based on our series of interviews you have shared some difficult time before someone identified your IBD. Do you have any additional tips to help others avoid the trauma you’ve been through?
A. As I said before you know yourself better than anyone, find someone who will listen to you and is willing to help you. Don’t take your doctors word if you have that gut feeling it is not right. One of the biggest things you can do to help yourself is research, research, research.
Q. What should I expect from a first doctor’s visit to a GI doctor? How often will someone with IBD need to see their doctor?
A. The first visit is lengthy, but easy. The doctor will get your medical history and symptoms. Take time then to voice any physical complaints you have.
Once he/she has your history and symptoms, he will develop a game plan. First, he will want to identify what type of IBD you have. In order to do this they may try medications for certain symptoms, and most likely they will schedule a test of your upper and lower GI tract. Depending on those results, or your doctor’s methodology, they may wait to schedule a colonoscopy and/or endoscopy or they may go ahead and schedule everything right away.
The doctor’s decisions will largely depend on your complaints and symptoms.
The frequency of your follow-up visits and sick visits will depend on the nature and severity of your IBD. It also depends on how often you have problems.
When I am sick, I will usually seem my doctor; get meds and a plan to get better. If I am not hospitalized, but sent home with medication I usually see her again in two weeks, sometimes sooner, again, depending on the problem.
If things are going smoothly I will see her about every six months.
IBD’S are so unpredictable that there is no one prescription or treatment. That is why it is so important to find a doctor who will listen to you and work with you as an individual.
Q. How do you know when it is time to find a new doctor?
If you are not getting any better and your doctor is not listening to you maybe you should check around. It all depends on your level of comfort with your doctor.
If you feel rushed and unheard when you visit the doctor, it is time to find a new one. As I’ve said before, you know your body. You know when things are changing, you don’t feel right, or your IBD is disrupted.
Q. I want to thank you for honest responses in this series of interviews. We’ve talked about some very difficult aspects of Crohn’s. If I may, in conclusion I’d like to ask not about your doctor, but to what extent being a Crohn’s/IBD patient has changed your life?
It has changed my life a lot, a lot more than you could imagine. I am no longer able to do things that I once enjoyed doing, like playing sports.
When I go out to eat I have to watch every little thing I eat. I also have to know where the bathroom is at all times.
Things that I used to take for granted can now cause so much stress. I don’t know where or if I’ll find a bathroom. I don’t know if I’ll have an accident with no one there to help me out. There are so many little things that I have to think about. It can make the simplest outing stressful.
Taking a long trip is difficult. You can’t pull off just anywhere on the interstate. What am I to do if I go horseback riding? I keep a lot of these concerns to myself, and do as much as I can. I mention them here because if you know someone who has an IBD you may not understand their peculiar behaviors and preferences. It isn’t something you want the world to know.
Also, if employers know you have an IBD they don’t want to hire you. You may miss work, but that’s not their worst fear. We cause insurance rates to go up because of frequent high medical expenses. IBD’s are covered under discrimination laws, but we all know that employers can always “find” another reason to hire someone else instead of you.
At first your family and friends may seem to understand how sick you really are, but when it never goes away you tend to lose their support. Sometimes they think you use your illness as an excuse. Hello, it is chronic! It never goes away. It is not going away.
It can affect my attitude at times, too, causing depression and anxiety. Sometimes you feel like you are in a world all alone and no one else hears or cares. That is why belonging to an online forum or support group really helps. It gives you a place to vent, get advice, and even get a cyber hug when you need it most. These people understand what you are going through because they are going through the same kinds of things.
Then, I’m able to paste back on a smile and face the real world.
I’d like to thank you again for your candor. I know our reader’s appreciate it. I want to wish you the best as you continue to battle Crohn’s. My prayers are with you and I know the best wishes and prayers of our readers are with you and all IBD sufferers.
You have certainly raised my awareness. Perhaps this will help people better understand Crohn’s and other IBD’s. I’m sure it will also help those who are suffering with IBS or other symptoms.
(If you are interested in reading more about IBD and Crohn’s feel free to scroll through my content producer page, using my I.D. button at the top of this article.)
