Thursday, August 15, 2019

What CAN You Eat?

We all get this question.
You know, when you go to someones house for dinner, they ask you what you can eat, or can't. Frankly it's not that easy to answer.
My answer always is, "Everything" and that gets me strange looks because they know that's not true.
It's just easier than trying to explain the foods that:

1. cause me problems
2. sometimes cause me problems
3. don't cause any problems
4. I outright avoid.

Easy right? Sometimes I will just eat whatever is put in front of me and pay for it later...though, I don't do that very often. I'll even tell them not to make something special for me, I will eat what you make, but will leave on my plate what I would normally avoid.  I hate making people feel THEY need to make changes for me. It's not fair to them.

So, I'm going to try and make a list of items of things I can and cannot eat. This is tailored for me and will be different for you. This also changes on "bad" days such as a flare.

DRINKS

I try and stick to just water because it's the easiest, BUT, I drink Brita filtered water. I cannot drink water straight from the tap, it's causes problems for me, I've been using Brita for almost 30 years now.
I avoid soda, but do drink it occasionally, because of the sugar and causes bloating. If I drink it at a restaurant, I ask for no ice (ice is usually made from tap water) and I know I'm heading home afterwards as I try to avoid public washrooms.
Fruit juices are also out.
I drink coffee and tea occasionally, but with coffee, only brewed coffee and not instant. With 1 teaspoon sugar and no milk or cream.
Milk is a straight "nope". Way too many problems drinking milk, even lactose free milk.
Alcohol is also a no go. I will have a small glass of white wine at Christmas and that's it. I do miss drinking long island iced tea though...

VEGETABLES

I ALWAYS avoid "gaseous" vegetables like, onions, cauliflower, cabbage, broccoli, asparagus, etc.
I also ALWAYS avoid all raw vegetables. They can cause blockages in the intestine because of strictures. I once was hospitalized from eating raw carrots...never doing that again, it was a very bad experience, throwing up every 5-10 minutes.
I avoid leafy green vegetables such as lettuce, spinach, kale, etc. You know....the ones you're suppose to eat. LOL
Any vegetable needs to be cooked down so it's soft.
My normal vegetables are cooked carrots, corn, potatoes or squash. I will have cucumber, with the rind cut off.

MEAT

This one is fairly easy.... chicken, fish, pork or hamburger.
The only problems I've ever had with meat is with steak. It's too hard to break down, in me anyway.

DAIRY

I try very hard to avoid milk or some milk products like ice cream, cream cheese, cream, cottage cheese, sour cream, whipped cream, etc.
Though, I CAN have yogurt, some cheeses (mainly hard cheddar's) and frozen yogurt.
When I was a baby, I could not drink cow's milk and was brought up on goat's milk. I outgrew it and did drink cow's milk (loved chocolate milk) as I was in soccer and figure skating, but when I was diagnosed with Crohn's, it caused wayyyy to many problems, even Lactose free milk. So I avoid it all together.

GRAINS

I try and avoid grains, not easy but I stick to white or sourdough bread. But I can tolerate instant oatmeal. The good healthy grains like whole wheat etc, has too much fiber.
I do my best to avoid fiber as it causes me to go to the bathroom because of lack of large intestine.

FRUIT

Basically.... banana's. Everything else has fiber. Berry's have seeds and other fruit have a skin that contains the fiber. So the safe bet are banana's

NUTS AND SEEDS

And that's a firm NO

It's hard to list everything, but I highly recommend to keep a food/drink journal. It was very helpful when I was first diagnosed.
I kept track of the time I ate or drank, what I ate or drank, when I went to the bathroom and type of bowel movement (watery, semi formed, etc.), as well as if there was gas or blood.

A food journal is a must, especially for the newly diagnosed.


Wednesday, August 7, 2019

Crohnie Quote of the Day

The following quote has to do with all chronic illness sufferers, no matter what the disease.
We are all told that we "are strong", or that we are "the strongest people they know" which is great, but we all don't feel that way sometimes. Then I heard this quote...

"People want to have something positive to say. They want to tell you how strong you are and how you need to fight. But, they don't know how hard it is and how you basically never feel strong.
But you deal with all this awful stuff and you feel helpless, sad, but you keep trying"

I don't know who said it or wrote it, but it's true.

Sunday, August 4, 2019

You Might Be A Crohnie....

If you get excited when you have a "semi formed" bowel movement
.... you might be a Crohnie

Friday, July 26, 2019

Are Clinical Trials Necessary?

The simple answer?  Yes.

First of all, what ARE "clinical trials" anyway? Again, simply put, is where people volunteer for tests to help researchers investigate new treatments for a wide variety of diseases or medical conditions.
They could be looking for how people respond to a new drug or maybe the side effects.
It also could be they are comparing existing drugs to new factors in a patients life. Clinical trials cover a wide variety of situations from new drugs or vaccines, or maybe surgical or even behavioral changes.

The World Health Organization (WHO) defines a clinical trial as:

any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes’ 

Think of where we would be without trials. Without the volunteers. Animals, labs and computer simulations can only go so far. Nothing compares to testing with the human body itself.
Imagine diseases or conditions like, heart disease, cancer, alzheimers, parkinsons or crohns/colitis WITHOUT those clinical trials. More people are alive today, or living better lives, not only because of those scientists and researchers working hard behind the scenes to bring new treatments forward, but also those volunteering for clinical trials.



Let's take me for example. I am currently on Remicade (800 mg) every 6 weeks. Recommended dosage is 5 mg/kg, meaning 5 milligrams of Remicade for every kilogram of the patients weight.
So I'm at about 10 mg/kg because I have an ongoing problem with fistulating peri anal disease.

I remember back in early 2000/2001, my gastroenterologist telling me about Remicade and asking if I wanted to be part of possible clinical trials. After discussing in length about it, I declined. My Crohn's at the time was 'manageable' and to be honest, I was scared, eventhough my doctor said that from what she'd heard and read, the drug looked promising. I was worried about possible side effects, but that was 20 years ago.

In hindsight, I wish I had taken her advice and done it. I eventually made the decision to get the Remicade infusions many years later. I've now been on Remicade for over 7 years now and it's been a "god send", for me. I regret my decision 19 years ago. I could have been part of the initial study and had the benefits from it earlier.

Researchers and scientists are constantly trying to improve life for crohn's/colitis sufferers. Whether that be with improving on current treatments or coming up with new ones. Clinical trials are happening all the time. Your doctor would know of any current trials going on or coming up but also search your country's crohn's and colitis foundations. Many will have links on their websites to pre screening. You might get declined, but it just means you dont meet their criteria, don't let this discourage you. I've been declined numerous times for various reasons.

The more patients who are willing to participate in clinical trials, the better the research



Monday, July 22, 2019

You Might Be A Crohnie

If your gut talks to you so loud, it's like having another person in the room with you
.... you might be a Crohnie

Friday, July 19, 2019

You Might Be A Crohnie

If you can be through pain, fatigue, dehydration, bloating and overall "unwellness" and still look like nothing is going on
.... you might be a Crohnie

Tuesday, July 16, 2019

WEGO Health Awards

I'm honored and humbled to have been nominated for this years WEGO Health Awards and endorsements are now open.
If you have liked, enjoyed, laughed or have been informed from reading my blog, please feel free to endorse me here:

https://awards.wegohealth.com/nominees/142

I have been nominated for Best in Show: Blog and Hilarious Patient Leader.


But if not me, then maybe endorse one of the other health activists/leaders listed

Thank you and good luck to all !!



Wednesday, July 10, 2019

You Might Be A Crohnie

If after you check in to your hotel room, you notice there are ONLY two rolls of toilet paper
... you might be a Crohnie

Tuesday, July 2, 2019

You Might Be A Crohnie

If you have come up a form of "toilet yoga" just to find a comfortable position while going
....you might be a Crohnie

Saturday, June 29, 2019