It's not always a cut-and-dry decision to determine which physician should be managing your care. Most people, when they have a new problem, probably call their primary care provider first, to find out what to do. And in many cases, that's where you would go first to seek treatment. But there are other times when a referral to a specialist would be appropriate. If you have a heart condition, you see a cardiologist, if you have a prostate problem you see a urologist, and if you have a digestive or liver problem, you might be referred to a gastroenterologist.
To some of you veterans of IBD, you may say "well, of course I need a gastroenterologist!" IBD is very complicated to treat. But I also know that some people have their IBD treated by their primary care physician or their internist. Children might be treated by their pediatrician, especially in places where a pediatric gastroenterologist is not available.
Find out more about what conditions gastroenterologists treat, why people may be referred to them, and if it's worth your while to see one.
More about doctors who treat digestive disease:
Photo © Renjith Krishnan
Are there any good parties this week? I certainly hope so! If the weather is nice, or maybe even if it's not, there will be plenty to do, and much of it will be outside. Our society tends to gather around food, so if you're at a party or a get-together this week, you'll likely be staring some typical cookout food in the face.
How much of a problem are those hot dogs and hamburgers for people with IBD? Well, the answer to that question largely depends on what state your IBD is in at this particular time. Unless you are very ill, you should try to get out and have some fun with your family and friends. I have some tips for you, and some ideas about the kind of foods that might be on your diet plan, as well as the foods you might want to avoid.
Photo © FreeDigitalPhotos.net
Do you ever feel as though there's a third entity in every intimate relationship you have? IBD can really worm its way between two people and prevent them from feeling close. A physical relationship can be part of that, but what's really important is the emotional connection that's made between people. IBD can infiltrate even the most important relationships in your life, and strain them.
No matter if you find yourself as the "well spouse" or the chronically ill spouse, there is work to be done in order to keep your relationship healthy. All good relationships involve some measure of compromise, and it's no different in a relationship that is complicated by IBD. Learn how you can work together to strengthen your bond, and keep the lines of communication open, even when IBD makes that task difficult.
Photo © FreeDigitalPhotos.net
With all the symptoms associated with IBD, it is sometimes difficult to decide what you should call your gastroenterologist about immediately, and what can wait until your next office visit. After a while, living with such serious symptoms as pain and bleeding can just seem normal, even though those things are anything but normal. Here are some of the signs and symptoms that should be reported to your doctor right away.
Do you ever have dreams about not being able to find a bathroom when you need one? Perhaps you dream about finding a bathroom but it is horribly unclean or somehow unusable? I have these types of dreams all the time, usually when I am under some kind of stress. And, truthfully, it has happened often enough in real life that I encounter a bathroom that is less than perfect. This is why I have tissue, wet wipes, and hand sanitizer in my car and in my purse at all times.
Dreaming about toilets isn't at all unusual for people with IBD. People who have a chronic health condition commonly have dreams closely related to their illness or sometimes even dream about death. The bigger problem is that these dreams can disturb your sleep. How do you deal with sleep problems?
More about sleep:
- Dreaming of Toilets
- Does IBD Keep You Up At Night?
- How Do You Get Better Sleep When Your IBD is Flaring?
- IBD and Night Sweats
Photo © Stuart Miles
World IBD Day is Monday, May 19th. I encourage you to spread the word about IBD in whatever way you feel comfortable. That may mean
- Talking to your friends and family about IBD
- Getting co-workers involved in a Crohn's and Colitis Foundation of America (CCFA) Walk or other fundraiser
- Volunteering your time to help someone with IBD who is struggling.
If you have inflammatory bowel disease (IBD) or you love someone who does, you know frustration. Heart-breaking, impotent, endless frustration. It starts with getting a proper diagnosis. For some it may go swiftly, but for others, symptoms go on and on while the diagnostic process drags out. And for others, there is a misdiagnosis (sometimes several) before IBD is finally ferreted out and confirmed. After the diagnosis, the difficulties continue with symptoms and treatments.
What would you say if I told you that your doctors are also frustrated?
Physicians Are People Too
Whether you believe me or not, they are. On May 3, I attended a roundtable of IBD advocates and IBD specialists (gastroenterologists who have focused their careers on studying IBD and treating patients with IBD) that took place in Chicago during Digestive Disease Week 2014. All the IBD advocates were either patients themselves, or the parent of a patient with Crohn's disease or ulcerative colitis.
As you might expect, we had some heated debates and some general consensus. We discussed the (lack of) available treatments, the difficulty in obtaining a diagnosis, and the education gap between patients and their doctors, among other things. We honed in on a topic that I'd encountered before personally, but had never spoken about outside of my own doctor's appointments: how physicians feel about IBD.
I frustrated my doctors. In 1989 I spent 40 days hospitalized, most of it not eating anything, and finally receiving the prednisone and sulfasalazine that stopped the bleeding. I had a young GI who was just starting his career, and my case perplexed him. We got along, we would talk about all sorts of things, but I could see it behind his eyes: he had no idea what the hell to do with me. He had more experienced partners (and I saw them on rounds too), but obviously they didn't know what to do about me, either.
Today there are many, many more options for treatment, and most patients don't reach the depths that I did, but some still do. And what I heard at the IBD roundtable was that the physician community is also frustrated with IBD. IBD as a disease, for sure, but also the politics of IBD.
The Politics Of IBD?
There are politics behind everything, and IBD is no exception. We struggle with finding the money to treat IBD, and the insurance companies are not always on board with how our doctors want us to be treated. There are more treatments available today than ever before, but so many patients still have a poor quality of life. Researchers agree that IBD is more like a range of diseases rather than just two, but government entities don't have the capacity to handle that paradigm shift. Patients need an education on their disease, yet physicians don't have the resources required to provide an answer to all the questions (keep in mind that I've been writing about IBD for 14 years and I'm still learning!). In some cases -- there are no clear answers to basic questions about IBD.
All of these facets of being a physician who treats IBD are frustrating. Gastroenterologists didn't get into the business of digestive disease because they don't want to help people. They want to help. They want us to be well. But there are so many disparate obstacles standing in the way. They are also overwhelmed. They are people too, and I would hazard to say that they become attached to some patients, and may feel like they are letting those patients down.
What Can We Do?
As a patient, or the loved one of a patient, what can you do to address everyone's frustrations? You can ask questions. You can be open to hearing the answers. You can take the initiative to educate yourself about IBD, and about how medicine works in general. You can be honest with your caregivers -- brutally honest if necessary. And you can demand respect and brutal honesty from them as well.
What do you think, IBDers? Are you up for the challenge?
Feelings of isolation and depression, especially if you are flaring and unable or afraid to leave your house, can be overwhelming and even crippling. IBD is not the kind of disease that people usually talk about freely, and you may not feel as though you have too many people you can confide in. Some people in your life might even make your circumstances more difficult for you because they just don't understand why you need medication, or always have "to go." You might not look like you are sick, leading some people to wonder if you really are ill.
Social functions can be particularly difficult. You may be on a restricted diet and feeling tired, which can leave you feeling out of place, even in a room full of people. Young people especially are affected by the feelings of being left out of group activities.
The good news is that there are ways you can advocate for yourself so you can feel included again, and take part in social activities with family, friends, and co-workers. How can you help yourself to feel "included" in professional and social situations?
- Stay on top of your treatment regimen no matter what you're doing -- follow your diet and take your medication. When you feel better you'll be able to do more of the things you like to do.
- Do your homework, and plan for outings by finding out what the menu is, where the closest bathrooms are, and bringing any supplies you might need.
- Join an IBD support group. Face-to-face would be best, but an online group will also be helpful. There's no group in your area? Start your own.
- Be honest with yourself about what you are -- and are not -- going to be able to realistically do. You can be selective and pass on certain activities in order to join in on others.
- If you're still feeling as though you're not included, you could try talking to those people closest to you and enlisting their help. They may not realize that you feel excluded.
How do you deal with feelings of being "left out" or isolated? Share your stories here.
More about dealing with your medications: