Monday, April 21, 2008

I lived the first 20 years of my life thinking that feeling sick all the time was normal. I constantly had stomach aches, cramps, gas, bloating, joint pain ("growing pains" the docs said) and fatigue. My pediatrician told me that I had a spastic colon and taught me how to massage my stomach to stimulate a bowel movement. I kid you not. It wasn't until I was in my early twenties and my boyfriend became frustrated because I was always complaining about not feeling well. "You're always sick!" was the sentence that got me to start realizing that this isn't normal.

I was diagnosed with Irritable Bowel Syndrome (IBS) in 2002, at the age of 22 years old. The doctor gave me a one page handout that basically said "eat more fiber." So I did. I started eating whole grains and more fruits and vegetables only to find myself feeling worse than ever. I went to a new doctor in 2005 and was told, once again, that I have "classic" IBS. He suggested Citrucel (aka more fiber!). Around this time I started doing my own research and learned for the first time about Celiac Disease. I was convinced that this must be what I had, my symptoms were so similar!! I asked the doctor to test me and was told that my symptoms were not typical of Celiac and so therefore, I must not have it. He recommended I got see a gastroenterologist. During my first visit to this GI he basically told me that I'm in my early twenties and otherwise healthy. He didn't think I needed to go through dangerous, invasive procedures that would probably not show anything. I clearly just had a bad case of IBS. IBS. IBS. IBS. I hate those three letters!! IBS to me, is the diagnosis they give when they can't figure out what's wrong with you. In my case, unfortunately, they should've tried a little harder. I was so discouraged by the doctors I had seen that I gave up and decided to just take matters into my own hands. Since I was convinced that I must have Celiac, I started a gluten free diet. I felt so much better! But it was hard to stick to and since I didn't have an official diagnosis, I ended up falling off the wagon not long after getting on.

In the last summer of 2007 I contracted a stomach virus that had been going around. It was a nasty one and I ended up getting so dehydrated that I passed out 4 times and wound up in the ER for IV treatment. The weeks following the illness I lost 12 pounds, couldn't get my hydration levels back up, and felt miserable. The doctors couldn't figure out what was wrong with me. I kept telling people that I've had stomach problems my entire life and that I was afraid I had something more serious than IBS, but no one would do any other tests. My bloodwork was pretty normal, aside from a borderline iron deficiency. The following January I caught the flu and once again found myself passed out on the bathroom floor, and then riding in an ambulance to the hospital for more IV fluids. Still, the doctors looked at me with puzzled expressions. Why is this otherwise healthy 27 year old girl getting dehydrated so easily?

After the second trip to the ER I knew it was time to find a doctor that would take me more seriously. I was still thinking that Celiac could be the culprit so I searched online for a Celiac specialist. I discovered that Beth Israel Deaconness Medical Center here in Boston has one of the best gastroenterology centers in the country and also has a Celiac center. I made an appointment with a new doctor that same day.

My first visit with the New Doc was very encouraging. He was very concerned and wanted to put me through a colonoscopy right away. I was so excited that a doctor was finally listening to me! He was also going to do all the bloodwork for Celiac testing. The bloodwork came back negative but I know that those blood tests are not always 100% accurate so I was not yet convinced. The colonoscopy, however, showed extensive ulceration and inflammation of the Terminal Ileum... the diagnosis - Crohn's Disease. I was totally shocked, but glad to finally have some answers. I was immediately prescribed a steroid and an anti-inflammatory. Diet was not discussed. As far as my GI was concerned, "as long as you're on medication, you should be able to eat pretty much whatever you want." I was not satisfied with that, but at that point, I just went with it. He said that there is no scientific evidence that shows that diet has anything to do with Crohn's disease. I completely disagree with this, but decided to try it his way.

The steroids were a nightmare and I did not react well to the anti-inflammatory. I was miserable for the first 6 months of treatment. I gained about 30 pounds, my face looked like a balloon, I was weak and tired. I used to be athletic, I lost all of my strength and stopped going to the gym entirely. In September of 2008, I wound up back in the hospital after another dehydration episode. The Doc changed my med regime and put me on an immune suppressant. Crohn's disease occurs when your immune system attacks your own body instead of foreign invaders. So they suppress the immune system in order to control the disease. There is no understanding of why or how we get Crohn's, nor do they have any ideas on how to cure it, suppression is currently the only answer.

I've read hundreds of stories from patients with all kinds of autoimmune diseases. I've done a ton of research on the subject. The common denominator in all of the stories of successful healing seem to be diet related. Many of the foods we eat today are unnatural and they are causing our bodies to go haywire. Humans were not designed to eat the way we do today and unfortunately, many of us are suffering in silence because the medical community does not widely recognize diet as an issue. It's not easy to drastically change your diet, but the changes you may experience are worth it. Your health is worth it. My health is worth it. I started this blog as a way to help myself to work through the changes I needed to make. It's been a long road and I'm still learning and changing, but I'm not giving up. Now this blog has become a resource for others that are suffering and are looking to make positive changes to their health as well. I'm happy to write about my experiences here if it means that even one person will be helped.

I don't think that there is one answer for change. Every body is different, there are tons of food allergies and intolerances out there. It's a challenge to figure out which will work best for you, but it's worth it. I focus on gluten and dairy because those are two of the most prominent intolerances and I feel that for me, these are the two most important things to try to avoid. I also tend to have issues with sugar and yeast (they go hand in hand). It's definitely a journey, but if it means that one day I can be healthy and medication free, then I'll keep on walking. I hope you'll keep walking with me!