Following the Diet

After receiving e-mails about the diet, I figured I should share what I'm doing and how it's been working for me.

I knew that completely cutting out processed foods and carbs was going to be extremely difficult. I don't eat poorly, but I was never a super healthy eater. I did some research about diets and found out that sugar can actually mess with our brains the exact same way as drugs do. If you take it out cold turkey, you will most likely have withdrawal symptoms and crave it so much that you have to eat sugar again. I decided to start the diet slowly.

I always (unless there weren't any good options) took a dessert after lunch and supper. First off, I cut that out. At first, I really wanted a peanut butter cookie or a piece of chocolate cake, but after a week, I decided to have one, and I didn't even want one. I no longer think about taking a dessert because I just don't want it anymore.

Then, I realized that I ate a lot of bread. When I didn't know what I wanted, I would make a sandwich. Instead of doing that, I would make a quesadilla. It still has grain, but not as much. Once I stopped craving sandwiches, I started making sure I took a salad, piece of meat, and possibly fruit (which isn't on the diet, but I wanted to get into eating healthy).

Throughout this time, I'd stopped drinking milk for every meal. I made sure I drank a glass of water in line for the drinks and then got a second; this is based on other diet articles I read. Water helps clear out our intestines. I stopped putting cheese on my quesadillas and salads and no longer took cottage cheese.

Now, when I crave potato chips or something salty and unhealthy, I eat almonds. I've been doing this long enough that I actually crave almonds over chips. I make sure I eat a small salad with every meal.

I've made myself the goal that by the new year, I will be 100% on this diet. It will have taken me about a month to make the transition, but I don't mind that it took a long time. Having the goal has allowed me to eat a cookie when I want one without feeling guilty, but I'm also working on only eating these foods. It's not difficult, and I feel so much healthier.

 

I will keep you all updated on how the diet is going and whether I feel better. I never believed a diet would work, but we'll see!

 

Merry Christmas!

A Cure/Cause of IBD?

Finals are finally done! Which means I have time to write another post. Today, I had the fantastic opportunity to talk with Dr. Steven Gundry from California. He's done some really amazing research, and I'm hoping to summarize his explanation of his theories about the cause of IBD.

Dr. Gundry first was a transplant surgeon, and apparently one of the best. He first began with the joke about how most people stop an elevator from closing with their hands, but surgeons stop it with their heads, because it's the least important part of their body. Joking aside, he took me throughout the timeline of his research. Dr. Gundry and his partner would do heart transplants, and several times it happened that the patients would develop coronary heart disease. They attributed it to the fact that those patients did not have healthy hearts before the transplant, so the same occurred with the new heart. However, the same thing began to happen when they did heart transplants on otherwise healthy kids.

Down the road, Dr. Gundry met a man who cleared his arteries in six months, with diet and supplements alone. This is a crucial part of his journey. He told me that you cannot see anything unless you go in with your eyes open, and without preconceived notions. Many researchers tend to already have theories about what should work, and that's what they end up seeing. Dr. Gundry saw that this man was clearly better, so for a year he tested this diet on himself and other humans. He thought that it worked, but wasn't sure how.

Dr. Gundry began to suggest this diet to his heart patients. His patients had amazing results. What couldn't be completely helped through medication was gone with this diet. Patients with other diseases said that they were even feeling no symptoms from the diet, which made sense because it was anti-inflammatory. People's arthritis was no longer bothering them, and Crohn's patients, who could never get rid of some symptoms no matter what treatment they tried, were symptom free.

At this point, Dr. Gundry looked at what exactly the diet was doing, whether it had more to do with what patients were eating, or what they weren't. What he realized, was that all the foods he had taken out of their diets included the protein lectin. This is a protein similar to gluten, but he has found that it plays a bigger role in autoimmune diseases. When on a gluten free diet, people tend to eat foods that are made from rice or corn, but corn contains 40 proteins that are very similar to gluten, so that explains why a gluten free diet may help, but it usually doesn't completely take away the symptoms of the disease. Lectin is contained within the seeds of certain plants and the genes of American cows (which is why people shouldn't eat cheese or drink milk from the United States).

This is how he explained how lectin is the problem. Plants are smart, a lot smarter than we give them credit. They can make matter from sunlight, which we have not been able to do yet. However, animals are their predators. In order to keep from being eaten, plants will put proteins (which act as poisons) within their seeds (or babies), in order to keep reproducing. Most animals, once they become sick from eating this plant, will stop eating it. He says that humans are pretty dumb; we think that we can overcome these poisons and take tums or immodium instead of not eating the foods that sicken us.

Lectin is contained in plants that were not originally eaten by our ancestors (if you are from European descent, possibly others as well), such as corn, potatoes, and seeds of fruits. At the beginning of human life (about 30 million or billion years ago), we only ate plants with two leaves. Although they also contain a poison, we had a long time to adapt and be able to digest them. Up until we were introduced to different foods (roughly 10,000 years ago), there is no evidence of arthritis in the skeletal remains of humans. As well, before that time period, most humans averaged to be over 6 feet tall. After then, humans shrunk to an average of about 4 feet, 10 inches (roughly 8,000 years ago). It took only 2,000 years to feel the damaging effect of eating poisons their bodies weren't used to. As he said, 10,000 years is merely a blink of time compared to the 30 (million/billion) years that we've had to evolve to be able to eat green, leafy vegetables.

The Kitavan society from the South Pacific eats no grains, and its only starch is from the taro root. They live well into their 90's with no modern medical care; they have no strokes, heart disease, or many other diseases of the modern world. And they smoke.

Italians refused to eat tomatoes until about 300 years ago because they believed the seeds to be poisoned. Irish people refused to eat potatoes until they had a famine 150 years ago because they believed them to be poisonous.

People with autoimmune diseases have a hyper-sensitive immune system. Dr. Gundry explained that when our immune system sees these toxins in our body, they attack more heavily than they do in a normal person's body.

Dr. Gundry also said that most people with IBD can relate the start of their symptoms to a certain event in their life, one that is usually related to stress or taking antibiotics. This is because our body relies heavily on the bacteria within our gut. There's about 5 pounds of bacteria in our gut, but they contain more genetic information than the rest of our cells combined. If these are messed up, such as by antibiotics or stress, it can start the onset of IBD if we are genetically predisposed to it.

 

I know this post isn't super well organized, but I'm still processing all of this as well. I was never a big believer in diets; throughout my 10 years I've been on tons of different diets, and none (except for liquid) have made me feel any better. However, I've been trying this diet (cheating a little bit now and again) for about 2-3 weeks now, and I had my first day of no loose bowel movements in months, if not over a year. I've gone through years of no remission, but I'm finally hopeful.

 

If you're interested in the diet here's what you can't eat:

Fruits

Corn

Grains

Dairy products from the U.S.

Sugar

 

What you can eat:

Nuts

Green, leafy vegetables

Meats (preferably organic)

French cheese or milk

Sheep and goat milk/cheese

 

If you have questions, feel free to message me!

Uncertainties of a Clinical Trial

Tomorrow is my week 6 appointment for the Ustekinumab clinical trial.
I had a great week about fours weeks ago in which I had only 2-3 bowel movements a day, and very little pain, but I'm back to 5ish a day and difficulties sleeping because of the pain. I get tired so easily and I don't like eating because it just causes more pain.

Sometimes it is so frustrating to be on a clinical trial. I have no idea if I even got the medication. However, there was that one week of being quite a bit closer to a remission state, so I want to have hope that I got the medicine and that it could possibly work for me. As well, because I've been back to where I started, if not a little worse, I know for sure I will get the drug this next time, so I will hopefully be able to tell if it's going to do anything for me.
This whole not knowing thing just gets to me. If I actually got the placebo, but I had that one really great week, why did it only last one week? And what could I do to get that back, because it wouldn't have been from the medication. But if I did get it, why did I only feel good for that one week? Why are my symptoms worsening on it?
Being on a clinical trial, well, I don't really have much hope left to ever reach a remission status. If this doesn't work... then what do I do? I go on another clinical trial and go through all of this uncertainty again?
Mrs. Buntrock told me about her no-carb, no-sugar diet. While it sounds like it's really worked for her, I'm 19 years old. I would be restricting myself from eating pretty much everything. I love pizza and ice cream, I really don't want to stop eating it for the rest of my life.
There's a lot of times where I wonder if I will ever reach a remission status. Since I was 10, I have had 2-3 months where I had few enough symptoms to be considered in remission. Is that what I have to look forward to the rest of my life? While I love learning about different medications and the theories of the cause of IBD, I would much rather learn about it from a book and not as a patient. At least I'll have plenty of personal experience when I'm a gastroenterologist.
All these questions, but no answers. I just hope that all the data they get from me brings us a little bit closer to understanding IBD.

Being a Crohnie College Student

*Disclaimer* I may be rambling because I'm not feeling the greatest.

Today I woke up feeling absolutely awful. I have a headache, cramps, diarrhea, and the overall spaciness I sometimes get when not feeling well. It really put my last post into perspective for me; it's a lot easier to be thankful about a disease when you aren't feeling super sick from it. On the note of being thankful, I thought about making a post about being a college student when you feel like crap (poop jokes!).

We all know how much it sucks to be sick. All you want to do is lie in bed, drinking 7-up and watching movies or sleeping. There isn't anything that can get you out of bed. Except for having organic chemistry, a biology test, and a test that 30% is participation. There's not really the I-can-miss-class-because-I-have-Crohn's situation going on here.

I know a lot of people that take advantage of anytime they are "sick" to miss class. People with diseases especially have an excuse because they can't help it. Frankly, I don't live by that rule. If I'm not down and out on the bathroom floor, I will make it to class. My professors know that on a bad day I won't be participating, but they know that I will not be using my disease as an excuse. I've found that you will be respected a lot more when they see that you are making an effort to be places even when most people would have called it quits. IBD has made me so much stronger, that I know I can make it to class even when I feel like a bus has run me over.

I'm trying to think about what my overall message for this post would be. It isn't that you should go to class every time that you feel awful, because sometimes that just isn't possible. I guess it's that we are a strong people. We know what it's like to be in such immense pain and have accidents and not be able to eat the things we want. I think it's important to not say that you are going to skip something because it's okay since you have a disease. You have to fight and do everything that you can, because otherwise you'll be stuck in your bed everyday, and that doesn't sound like fun.

One thing I've found helpful, is keeping in contact with my professors and my support advisor about my disease. They know when I'm not feeling well, and they work with me to make sure I'm still doing everything to get the best education possible.

You can do everything any non-digestively challenged person can, you just have to fight a bit more.

Thankful for Crohn's

I know it's been pretty much forever since I've last posted, but with finals coming up I am so incredibly busy.

With Thanksgiving come (and gone), I felt it time to really think about how thankful I am to have Crohn's disease. It's not that IBD is rainbows and unicorns, but I've spent so much time in the recent past being angry about my never-ending flares to really remember why I love having this disease.

Because of my Crohn's, I've been able to enjoy life more.

Since the start of my clinical trial, my CDAI (Crohn's disease activity index) has reduced dramatically, not to a remission, but I have quite a bit less pain. The other day, I had one formed bowel movement and almost no pain. It was such a glorious day, and I fully enjoyed it.

That day made me realize that, without my Crohn's, I would not have been able to appreciate feeling healthy and well. I will never take a day that I am able to get out of bed and do everything I want for granted. I think that's pretty darn cool. Each day that I wake up in little-to-no pain, I feel fantastic.

Even when I'm feeling fairly ill, I enjoy everything I do more, because I know I'm going to pay for it later. Eating a greasy pizza, or popcorn is absolutely amazing, because it has to be, or it wouldn't be worth putting myself through the after-pain.

I realize it sounds silly to be thankful for pain and accidents, but they help put life into perspective. Today, I was so thankful to not have to rush to go to the bathroom. I casually waited until it was a convenient time, and then walked over. Best bathroom time in a long time. Most people just go to the bathroom, and that's it. I'm so happy I have the chance to be grateful about making it on time.

For all those people who feel sorry for us with a chronic disease, I feel sorry that you probably don't have the chance to appreciate some of the simplest things in life.
Crohn's disease is an awesome disease :)

 

 

Accepting Your Disease

Accepting the fact that you have a chronic disease is a hard pill to swallow, especially when that pill causes unendurable pain and sadness. Although I was diagnosed almost 10 years ago with Crohn's disease, I still find myself getting very angry or depressed, especially during times of flares.

I've always tried to see the positive side of IBD; my best friends were met through Camp Oasis or other IBD conferences, I've discovered my passion for the medicinal field, and I've become a stronger person because I have needed to deal with a terrible chronic illness since I was a child. However, that doesn't mean I'm always super ecstatic that I have this disease that's attacking my digestive system.

The most difficult times for me have been when I haven't been able to eat what I want, or had to completely sit out of something because I couldn't push myself any farther. Today, with health care such a hot topic, I worry about being able to fulfill my dreams because I will need to find a way to pay for expensive healthcare, and the rising cost of medical bills. I see other people not needing to worry about what they do to their bodies, and I wish that I could have just a few less worries in my life.

Every once in awhile I hit this roadblock, in which I see my entire future before my eyes, painful day after painful day. I'll never be able to eat without worrying about whether or not I've just given myself some extra hours of pain. I see a life in which I will be worried about passing on my Crohn's to my children; in which case I would feel so incredibly guilty for causing them the same pain and suffering I go through on a daily basis.
There are so many points in my life where I have cried and cried, thinking that life cannot possibly be fair. Why was I chosen for this disease? What did I do to deserve this?

Recently, I have learned that realized that things happen for a reason. I may not like the fact that I can't always do the things I want, but I pray and ask God for the patience to understand that life is not meant to always go the way I want. I've also definitely learned to slow life down. I do not need to get the best grade on every test, be the fastest, be in the most activities.

All I need to be... is me.

Crohn's disease, although it does not define me, is such an integral part of my being. I am who I am because I have had tribulations. I think the way I do because I know what it's like to be picked on because  my medications have made me fat or slow. I know what it's like to feel all alone. Crohn's disease has made me empathetic to those who suffer and it makes me so happy to be able to help other people. Although I still have many hurdles on my road to acceptance, I know that I am okay with who I am, and that has brought me closer to my goal.

Telling Your Significant Other

During our IBD talk at Camp Oasis, the teenage girls were asked to talk about how and when they would tell their significant other about their disease. I thought this was a really interesting topic as some people are super open, and others don't tell many people. This can be a delicate subject, and it's up to you when you tell him/her about your IBD.

If your SO didn't know before you started dating, how do you start up the conversation about IBD? "I'm really enjoying this salad. By the way, it may give me uncontrollable diarrhea." Not exactly an easy topic to broach.

The perfect time to break the news is different for each relationship. If you start out strong, it may be easier to get it out in the open right away (probably not during a meal). Honestly, if your SO can't handle the fact that you have a digestive disease and thinks it's gross, he/she is so not worth your time. Telling your SO early on means that you can slowly bring up other topics about it - food, bathroom issues, doctor appointments, etc.

However, if you don't feel comfortable telling your SO right away about your IBD, that's fine too. It may be better to tell them before things get too serious - some people are jerks and it's easier to get hurt if you're deep into the relationship. As well, it may be difficult to explain why you have to run to the bathroom several times or have to cancel on several dates. Complete honesty is best to keep relationships healthy.

I've found it to be so much easier when my guy knows about my Crohn's. They understand why I can't eat certain foods and know that I'm not being a party pooper when I say I don't feel like going out. Plus, many people will be truly curious about the disease and want to know more. As great as Crohnies are, sometimes it's nice to talk to someone without IBD just to get out your frustrations.

Telling someone that you have IBD can be a truly terrifying ordeal, but so rewarding as well. Most people will be on your side and so eager to help you fight your battles. Don't be too scared - they care more than you think.