When is it ok to panic???

Since October, I have struggled with understanding Crohn's disease. The information is overwhelming. Sometimes I think I know the appropriate amount of information to live wisely with this disease. Then I panic about a new symptom and jump on Google. All previous knowledge fails me. I know the internet is filled with nonsense, but still, I need some relief. I know it's a 50/50 coin toss. When I Google, I may see the most terrifying information pop up. OR maybe it will be no big deal - stop stressing Carly! I'd like to constantly think that it's all in my head. After all, I have been told for years that my symptoms are because I'm depressed, anxiety-driven, and just suffering from irritable bowel. How could I not wonder?


There are so many things to take into consideration when having Crohn's. The list is extensive when you look up "chronic diarrhea." Same applies to all medications. I read the side effects list and see myself having ALL of them. So here is my confusion:

1. I live with Crohn's which means: daily diarrhea (for most).
2. Symptoms for Crohn's alone can also be symptoms from medication.
3. Symptoms for Crohn's can also be similar to dehydration from chronic diarrhea.
4. Simple body malfunctions can be similar to serious complications with Crohn's.

My problem: how do you differentiate all of these symptoms? How do you know when to be concerned, or when to think you're okay?
It's no fun feeling like you're a hypochondriac. Currently I have this soreness near my left ankle. The tenderness and pain shoots up near the left portion of my chin. Now, I've had a blood clot before, so I'm aware of the feeling. I did nothing physically to pull a muscle or bruise my muscle. This is where the panic sets in quickly. Diarrhea can cause joint pain or tenderness from dehydration...check, I do have chronic diarrhea. Crohn's as a disease can cause joint pain...check, I have Crohn's! Dehydration can cause tenderness in the muscles or extreme joint/leg fatigue...check, I'm probably still dehydrated from chronic diarrhea! Crohn's disease can cause a person to be susceptible to blood clots, same with medication...check, I've had deep vein thrombosis AND I'm taking plenty of meds.
Wow, I think I've stressed myself out enough for today. This debate is enough to drive anyone crazy.

Of course the simplest thing to do is call your doctor and hope he's available for a response. I'm sure we've all experienced going into the ER or an urgent care of some sort and getting a dense doctor. Most general doctors don't specialize with the digestive system. This makes it so difficult for an IBD patient at times. It's never fun having to explain your disease to a doctor - let alone anyone!

Confession

I have a sweet tooth. I can go without eating wheat and dairy easily. But when it comes to a nibble here and there of candy/sugar, I'm weak.
I confess (with such guilt) that the other day I decided to eat frozen yogurt (dairy and sugar) and a few cow tails candy (more sugar). Darn you Cracker Barrel! Boy did I ever pay later that evening. Why, oh why can't I just accept that I CAN'T eat things like that? I might as well get a blow up mattress and start spending the night in the bathroom. OR I can do what my mother suggested and get a mini TV installed on the bathroom wall. I think I need a plastic, comfy toilet seat for "old" people. Oh dear, this disease is really A PAIN IN THE BUTT!!!

I just want a little sugar...

A healthy diet for Crohn's can be immensely complex. I would say that I'm knowledgeable when it come to eating the right foods. However, when you're struggling to stay in remission, all your knowledge gets thrown out the window.
Just because certain foods are healthy, does not mean that it won't upset your stomach. I can easily determine the foods that are known to cause bloating and gas. I know I will blow up if I eat a plateful of steamed broccoli. On the flip-side, broccoli is good for you. It's bizarre that nutritious vegetables can cause problems for people with IBD. Now that I have Crohn's almost all of my food intake has to be evaluated. I know that everyone reacts differently to foods. However, there are certain foods that are on the "eat with caution" list - which generally applies to most Crohn's patients. I do my best to stay away from dairy, raw vegetables, gluten and high fat foods. The only dairy I will allow myself is yogurt. This is the only dairy product that doesn't cause me pain. I can have other dairy products here and there, but not in excess or large portions in one sitting. Also, I know I'm taking a risk. If I have gluten, I know I need to balance the rest of my meals for the day. Before I had Crohn's I ate bread products for almost every meal. Gluten is in everything!
For six months I have been experimenting with my diet. I'm still on my way to remission. So I know that certain foods will affect my stomach. For a short period I was in denial about my disease. It still happens from time to time. I thought I could handle a nibble of dessert after dinner. I have such a sweet tooth. I should have known that I can't just have a nibble. I was off to CVS to buy packs of marshmallow Peeps. I don't think I can emphasize the operative word: packs. I convinced myself that it was OK, because it's almost Easter. Eating Peeps is festive, everyone knows that. I told myself that I was allowed one Peep a night - obviously it never happened that way. After scarfing one row of Peeps, I would go to bed bloated and in pain. I knew I was eating too much of the wrong things. I didn't need a doctor or nutritionist to tell me what caused the nightly pain and bloating. I had to take a step back and evaluate my diet.
My main concern is my future with Crohn's. I know that diet won't determine if I have a surgery down the road. But I do know that it can decrease my pain and keep me nourished. Having chronic diarrhea is another way to easily lose all your nutrients. I have to drink more than the suggested amount, because every morning I have diarrhea. I'm not just talking once...or twice...
What I'd really like is donuts for breakfast, pizza for lunch, and a bean burrito with cheese for dinner. I would love to have dessert every night. Whether it be Peeps or a bowl of sugar cereal. I need to face my reality. Maybe now I will really appreciate having sweets once a month. I supposed going without lots of sugar and cheese is a positive change. My body is already attacking my colon. That should be enough in itself to eat healthy and stay away from toxic, processed food! I need to give it all the proper nutrients. I'm the only one that is in control.
For now I will dream of a world of Peeps....

Help is ALWAYS needed

Living with Crohn's can make you feel isolated from the rest of the world. Everyone else can go grab a quick bite to eat, have drinks at a bar, scarf down their Easter candy, and stay away from the hospital. Now, most people with IBD can do these things as well. However, we know that there will be severe consequences. I can't go to Charm City Burger and indulge because I know I will be spending the rest of the evening in the bathroom. I can't go to Chucky Cheese with my nephew and share a small, greasy cheese pizza. But I can join for good company. Yes, it's awful watching people eat what you know will turn your body into a hot air balloon (filled with the smelly kind of gas). Easter will be extremely difficult without my candy-filled basket. Those close to you will try to understand and feel sympathy for you. Maybe they will even partake in your healthy diet. Family is always a superior support system. Right now, living with this disease, you need all the support you can get!
I am a firm believer that knowing someone else with IBD is a great advantage to a healthy future. People with IBD can say with honesty, " I know how you feel." This is why I appreciate organizations like the Crohn's and Colitis Foundation of America. After my diagnosis I gathered so much information from their website: www.ccfa.org. The non-profit organization is dedicated to finding a cure and bringing the IBD community together. They have numerous events year round that allow you to be involved. The seminars are immensely beneficial and informative. Medicine is constantly changing and it's important to keep up with the latest research. The organization gives you the tools to gain knowledge and truly understand what's happening within your body.
My absolute favorite offering from CCFA are the support groups. There are different chapters depending on your location. Right now I am speaking of the South Florida chapter. The group meets the first Tuesday of every month. A CCFA volunteer generally leads the group discussion, but everyone has a voice during the session. You can ask all the embarrassing questions you want. Finally you can see faces of your fellow survivors. This makes you realize you're definitely not alone. People are nodding their heads in agreement, because they've all been there before. Even though the disease affects people differently, it's still nice to hear opinions and recommendations. Sometimes it's even nice to be with other people who can laugh and find the positive in life with IBD.
For me, I leave the group feeling motivated. I'm ready to control the disease and not let it take over my life. I feel ok with feeling sorry for myself from time to time. I feel lucky to be in love, lucky to have a life. I look forward to the next support group session. I feel like I've gained new friends who will greatly influence my life. I feel comfortable with the word Crohn's.