Crohn's Disease: 5 Frequently Asked Questions
This hub is by no means meant to replace advice of your doctor. I am not a doctor. This information is compiled from years of personal experience and reading.
Crohn's disease is a disease that can be very hard to describe and people are often clueless about what it really is. I was one of those people once. In order for you to understand why I decided to write this hub, I think it is important for you understand where I am coming from. For the last few years, Crohn's has been as real to me as the person standing next to me. It's like that house guest you never invited yet refuses to leave. When did this all start? Here's my story.
In 2006 I was diagnosed with Crohn's disease. I had been sick for over a year. Initially I was told that I had Irritable Bowel Syndrome (IBS), given some medication, and sent on my way. I was heading off to college so I took the meds and ran (I really didn't like doctors). The medications helped for about 2 months, and then everything started to go downhill again. It wasn't until May of the following year that I started to go to a doctor again. The reason is somewhat embarrassing - I had begun to lose my beautiful, thick hair. So it was my vanity that helped me to go back to the doctor as well as some encouraging from my parents. The next few months would be a series of visits to the doctor and blood tests. Finally, after I had dropped down to about 100 lbs and was so weak I spent most of the time in bed (except when I had to make mad dashes to the bathroom) I was finally recommended to an infectious disease doctor. My doctor had no clue what was going on, but I had a fever that kept coming back and so he sent me to this other doctor. I went thinking this would be another series of questions, poking and prodding, blood tests, and then I would go home. However, as soon as the doctor saw me (I was thin, pale, and shaking from the exertion it took to walk into the office) she said I needed to go to the hospital. They needed to run a battery of tests and x-rays and it would be easier in the hospital. The rest of that time is a little bit of a blur. I remember getting to bed that night in the early hours of the morning. I remember having to drink that horrible concoction that cleanses you out for a colonoscopy (my Mom was amazing, sitting at my bedside and making sure I drank the horrible stuff). Finally, I remember getting the diagnosis that it was Crohn's disease. I wasn't happy about the diagnosis, but I was relieved. I knew what was wrong with me! Or did I? Although I had a cousin with Crohn's, I realized that I really knew nothing about it. Since then I have read many different articles about this disease and my own personal experience has given me a first hand view. These questions I have listed are questions I asked when I was first diagnosed, questions I have asked since then, and questions that I have been asked when talking with others about my disease.
1. What is Crohn's Disease?
The simple answer? A digestive disorder. That's what I tell people when I don't really want to explain it to them. Unless they are sincerely interested in knowing the details, this is usually sufficient.
Another simple answer: It's an inflammatory bowel disease. At this point, disinterested folks will simply nod and say "oh, okay." Others that are more interested might come back with, "what does that mean?" Well, what does it mean? Let me explain.
Crohn's disease is chronic inflammation of the bowels or gastrointestinal tract. It usually affects the small intestine (or ileum) and beginning of the colon. However, none of your GI tract is really safe from the disease. It can affect you anywhere from your mouth all the way down to your anus. If the inflammation is only in the colon (or large intestine) then it is call Ulcerative Colitis. If you are one of the lucky ones that has inflammation throughout the large and small intestines, then what you have is called Crohn's colitis. Catchy name, right?
Once you've explained that Crohn's disease is inflammation of the GI tract, some might be content while others want to know what causes the inflammation. This is where you then explain that Crohn's is also considered an autoimmune disorder (like lupus and rheumatoid arthritis). Essentially, your BFF (your immune system) becomes your Frenemy. For some reason, your immune system decides that your perfectly healthy GI tract is sick and sends antibodies to help. The result is inflammation. Think of it as your well-meaning friend deciding that there are problems between you and your significant other. He or she comes over and starts trying to "fix" the problems. This attempt can result in irritation, frustration, and possibly and all out fight. You know the phrase, if it ain't broke don't fix it. Well, your immune system tried to fix something that wasn't broken and look at how well that has gone!
And that is Crohn's Disease in a nutshell.
Frenemies (for laughs)
Why are you reading this hub?
2. Is there a cure?
No. It is a disease and you will have it for the rest of your life.
Depressed? Don't be! While there isn't a cure there are many wonderful medications out there to help fight this disease. Also, remission is always a distinct possibility.
Doctors like to use the following assortment of medications, depending on the severity of the disease:
Aminosalicylates - These medicines help control your symptoms and inflammation (usually for more mild cases)
Antibiotics - These are used to fight any infections that might have occurred. Usually if you have a fever this is an indication that you might have an infection.
Corticosteroids - These guys won't enhance your sports performance, however, they will enhance your ability to control the inflammation from a flare up. Keep in mind, these are not a long term solution to your Crohn's. I think of them as the meds that help give me a kick start towards healing. The other medications I take are what will help me in the long term. In fact the less I use steroids, the better!
Immune suppressants - Remember how your immune system is now your Frenimy? Well, these meds help to keep things under control by suppressing your immune system. This means that you will be more susceptible to getting sick. Follow your doctor's advice on getting the flu shot and don't forget to wash those hands!
Biologics - These are the big guns that they whip out if the aminosalicylates or other medications no longer work. Sometimes they might use them first, but not always. These are administered either by injection or IV.
So, no, there isn't a cure. But if you work with your doctor to find the right combination of drugs and healthy lifestyle habits, then hopefully you will be able to control you disease and enter remission.
3. How do you get Crohn's Disease?
Unknown. It may be surprising, but despite our advanced technology and medical knowledge the exact cause for Crohn's disease is unknown.
What do we know? We know that one or all of the following three factors is the reason why you have Crohn's disease. They are:
1. Genetics/Heredity - does it run in your family? If you are genetically disposed to Crohn's disease, then all that needs to happen is a trigger to set it off.
2. Environment - surprising fact, more people have Crohn's in developed countries than in undeveloped countries.
3. Inappropriate immune response - essentially, your immune system (for some unknown reason) receives a message that your digestive system is in trouble, it sends help, and then (rather than stop) it keeps going. This results in inflammation
If you have Crohn's disease, then you can derive some comfort from the fact that there is probably nothing you could have done to prevent the onset of the disease. Especially if, like me, you don't have a first-degree relative (parent, sibling, or child) that has the disease. If you are concerned that you might have Crohn's disease but it isn't active, then the only advice I can give you is to eat well and start doing Yoga. Healthy eating and learning how to manage stress are both useful tools to have with Crohn's so it would seem to follow that they might help prevent or at least delay the onset of the disease.
4. How does Crohn's Disease affect day-to-day life?
This is a difficult question to answer. It all depends on the severity of the disease. If you have moderate to severe Crohn's then it really could affect your day-to-day life. If you have mild Crohn's or your Corhn's is in remission then it might not affect it so much. The easiest way to explain this is to explain some of the different symptoms people with Crohn's have and how those symptoms affect daily life.
1. Diarrhea/Constipation/Urgency: This is the really unpleasant side of this disease. This is what makes it such an awkward conversation topic. When your Crohn's is active, you become very much aware of where public restrooms are located. You become hesitant to go some place that might not have a restroom. At work things can be difficult if you have to go to the bathroom frequently. It is advisable that you speak with your boss and, if necessary, get a note from your doctor. You don't want to have unnecessary issues at work simply because you weren't willing to be open about your disease. Another thing I suggest is listen to your body and listen to your doctor! If you have to go to the bathroom every ten minutes, then you should stick close to home and call your doctor. If your Crohn's is under control, then it shouldn't limit you as much. You will still be aware of the locations of restrooms, but hopefully you won't have need of them.
2. Abdominal cramps or pain: The pain associated with Crohn's disease can be non-existent, severe, or anywhere in between. If you experience severe pain, your doctor can provide you with some painkillers. This is another instance where, if you are experiencing severe pain, you had better be on the phone with your doctor. Many people, however, are lucky enough not to experience pain frequently or severely. In this case, you can live your life normally. Again, don't forget to listen to your body and know what is normal for your body.
3. Fatigue: This can happen if your Crohn's is active. One of the negative affects of Crohn's disease is malabsorption. Because of the inflammation in your digestive tract your body is unable to absorb the nutrients from your food as well as a healthy digestive tract is. Therefore, if you are having a flare up you won't be absorbing a lot of nutrients and less nutrients equals less energy. Again, this fatigue can be difficult in the workplace. If fatigue is plaguing you do NOT depend on caffeinated beverages. I know this can be difficult, but caffeine can actually make your symptoms worse. Unfortunately, I have no other advice for battling fatigue then to make sure you are being extra vigilant in taking your medications and are working with your doctor to control the flare up.
What this all boils down to is this, if your Crohn's is under control then you should be able to live a normal, healthy life. Of course, you will be a lot more aware of your body and you will have your doctor's number on speed dial. However, I feel that these challenges and flare ups only serve to help you value the times when you are healthy so much more. You no longer take health for granted.
5. How can Crohn's Disease affect your life in the long term?
This is the hardest question of all and, quite frankly, I do not have a perfect response. I have yet to discover for myself what the future holds for me with this disease. Here are some potential things that might happen:
- The disease will go into remission and you will be able to enjoy months or even years without the pain and discomfort associated with Crohn's.
- You will have flares up off and on
- You will need to have surgeries
From what I have read, I have come to the understanding that if you have flare ups on a fairly regular basis then you will eventually have to have surgery of some kind. However, I have decided not to dwell on that. Rather I have decided to focus on finding out how to life a healthy and happy life, despite the disease.
If you are reading this hub because you have a family member with this disease, then I hope that this has helped provide you with a glimpse into the life that those of with us with this disease lead. This disease you be a lot easier to live with if more people were aware of it and what it means.
If you are reading this hub because you have this disease, then I hope that you have found some of this information useful. If you have anything you wish to add, please do so in the comment section below! I am always eager to hear of the experiences of others.
Crohn's disease is a life changer. It can either be seen as a horrible disaster or an opportunity. You can either choose to be miserable about this disease which has come to take over your life or you can choose to take advantage of every moment given to you. Life is full of challenges. Crohn's disease can be a great challenge. The big question is how will you let it define you?
I was diagnosed a number of years ago. Since then I have graduated from college with my bachelor's and master's degrees, I have served as a missionary for my church,and I have worked various jobs. I am now an adjunct instructor, a wife, and a mother. Each phase of my life has been influenced by Crohn's and by how I have approached the disease. Have I always been positive and optimistic about it? Absolutely not. However, I have learned and I am still learning.