Frustration...

Living with a chronic illness can be incredibly frustrating. As I sit here writing this my knee is swollen and hurting and my insides are rumbling from the bagel and cream cheese I ate for breakfast. Life with a chronic illness means doctors appointments, medications, diagnostic tests, sometimes surgeries, pain, feelings of loneliness, and uncertainty. I think that when you have a chronic illness, it’s important to learn how to live successfully. What I mean by this is that it’s important to take control of your life and to learn what you can do to make things a little easier for yourself. Here are some things that might help:

• Find a support network: Many people who have chronic illnesses find that going to a support group is incredibly helpful…myself included. The reason being that it is wonderful to have people to talk to that genuinely understand what you are going through. Family and friends can be of great support, but frankly, they just don’t understand.
• Find a doctor you gel with: No matter what illness you have, there are many doctors around to treat it. It’s important however, to find a doctor you feel comfortable with and who matches your personal style.
• Educate yourself: Learn everything you can about your illness and the medications you are taking. That way you have some knowledge of what you can expect and you can be an active part of your treatment.
• Ask a lot of questions: Ask your doctor what you can expect to happen down the road with your illness. Ask your doctor a little bit about the new medication you are about to start taking. Ask if there is anything you can do in your daily life to make yourself more comfortable (i.e. diet, exercise).

Life with a chronic illness means a new normal. Things are never going to be like what they were before you were diagnosed. However, that doesn’t mean that life can’t be good. Having a chronic illness forces you to take a good look at yourself and to appreciate life in a whole new way.

8 Things to Avoid When You Have IBD

There are so many things to do and not to do when you have IBD (inflammatory bowel disease). In my experience, these are the top 8 things to avoid when you have IBD:

1. Stress - While there is no known cause of IBD stress can definitely be a trigger. Now you are probably thinking "How in the heck am I supposed to avoid stress? That's impossible!" While I know it's hard to avoid stress completely, reducing stress can be a great benefit to you. Everyone has different ways of reducing stress. For some, including myself, it's by exercise. Others reduce stress by reading or watching TV. Find something that works for you.

2. NSAIDS (Non-Steroidal Anti-Inflammatory Drugs) - This is a big one. Many gastro's advise their patients to avoid long-term NSAID use because they can cause serious adverse affects in people with IBD. They can cause ulcers in the stomach and first part of the small intestine, and they can worsen bleeding and inflammation. I have firsthand experienc with this, and let me tell you, it's not fun.

3. Certain Foods - Now this varies from person to person. While certain foods don't cause IBD they can trigger a flare or cause discomfort and worsen diarhea. It's important to find what foods work for you and what don't. While you are trying to figure this out, keep a food journal to help you out.

4. Dehydration - It is so important to be aware of dehydration when you have IBD. Because of all the lovely bathroom trips that come along with flares, it's essential to make sure you are getting enough liquid every day.

5. A sedentary lifestyle - This is going to vary from person to person, and it's also going to depend on whether you're having a flare or not. For me, before I had surgery, I was very active. I went to the gym 3-4 times a week and also did yoga. When I had a flare though, I couldn't do as much and cut back on most of my exercise until I felt better. Find what works for you. Some sort of exercise is important though, not only because it's good for your body, but because it's good for your mind too. When you exercise, your body releases endorphins which not only put you in a better mood, but help with stress as well.

6. Malnutrition - When you have IBD and are having a flare, it is really easy to become malnourished. You don't have an appetite. You are in pain. You are constantly running to the bathroom. Because it is so easy to become malnourished it is essential to get the nutrients you need in some way. It helps to eat small meals throughout the day. Find nutritional food you can tolerate. Drink protein drinks. Take supplements in pill form.

7. Isolation - Having a disease like Crohn's Disease or Ulcerative Colitis can be very isolating. People who haven't experienced these diseases just simply don't understand what it's like. Not only that, quite frankly, it can be embarrassing! However, isolating yourself will only make things worse. Find an IBD, J-pouch, or Chronic Illness support group. I go to one, and let me tell you, it is so helpful to talk to other people who understand what you are going through!

8. Smoking - Especially if you have Crohn's. People who smoke, or who have smoked in the past, have a higher risk of developing Crohn's than those who don't smoke. Crohn's disease patients have a higher risk of relapses and repeat surgeries. Interestingly enough, in patients with ulcerative colitis, nicotine has been shown to have a positive short-term effect on those having a flare. I AM NOT TELLING YOU TO SMOKE PEOPLE! I'm just saying, there is research going on now on the effectiveness of nicotine patches in controlling flares in patients with UC.

Well, that's all I've got for now...stay tuned for more.

The Beginning...

If I had a dime for every time I have heard the phrase "Your color looks good" in the last year I think I'd be rich! Since this is my first post, I guess I'll start with a little background:

My story began about 3 years ago when I was diagnosed with ulcerative colitis. I was 25 years old. Since then, life has been a little bit of a roller coaster; mostly good, with the last year being the most challenging time of my life. So that I don't go on and on I'll just give you the short version (well at least I'll try). On April 14, 2009 I was admitted into the hospital with a flare that I had been trying unsuccessfully to get under control for the last 2 months. By that time I had lost almost 30 pounds (I started at only 108 lbs so losing 30 pounds was not a good thing!) and was extremely ill. On May 5th, I had my first of 3 surgeries, which was a total colectomy (in layman's terms, I had my colon removed). Yes, you can live without a colon! For the next 5 months I was to live with a temporary illeostomy and endure 2 more surgeries. If you don't think that's bad enough, wait there's more! After my first surgery, I had lost so much weight that a fat pad that allows food to pass into your stomach closed and I had to have a tube down my nose into my stomach for 3 weeks so I could "eat" through the tube. Oh, I almost forgot the two blood clots from picc lines and the three months of blood thinners I'd have to take because of those suckers. How could I forget that?

Three months later was my second surgery where the doctors created my J-pouch, an internal "pouch" made out of my small intestine that would essentially act as my new colon. I know... weird. From the beginning, my body did not react well to this surgery. I was vomiting the day after surgery which meant...yep, you guessed it...another tube down my nose into my stomach. I only had this one for 3 days though. Three weeks after surgery I became sick again. For the next month, I had no appetite, was nauseous, incredibly weak and was losing weight. Basically I felt like hell. And to top it all off, my incision wasn't healing correctly so my surgeon had to cut part of it open again and I had to pack it with gauze for 8 weeks. Yes, it's as gross and painful as it sounds. After an ER trip, 3 day hospital stay, and a tube in my stoma (aka Stomie the Clown), I had my final takedown surgery a month early. My surgeon found that I had scar tissue that was not letting food completely pass through which was causing all my problems.

My takedown surgery went off without a hitch! It's now been 8 months since my final surgery and I'm doing great! I've gained back almost all my weight, I'm active, and lovin' life. My purpose for this blog is to use my experiences to get the word out about IBD (inflammatory bowel disease) and other chronic illnesses and to help those suffering from them. IBD and chronic illness can create so many emotions including anxiety, depression, fear, and helplessness. I found that it helped tremendously to have someone to talk to who had been through what I was going through and to get educated (just not too educated...you don't want to scare yourself with what could possibly, but probably won't, go wrong).

Anyway, that's all I got for now...stay tuned for more...