Tuesday, September 17, 2019

"Crohn's Disease Ate My Colon" - My story (Part Four)

Physically and Emotionally

Everyone talks about Crohn's Disease and how it affects your "gut health", I mean, there's a hell of a lot of things going on in there all at once. But the disease is much, much more than that, physically and emotionally as well.

When I was finally diagnosed, I already had symptoms for months. Pain, weight loss and diarrhea were the most obvious to everyone around me. I mean, I couldn't really hide it. It's hard to disguise running to the toilet every few minutes or being curled up in the fetal position on the floor or your clothes hanging off you like I was 10 and wearing my dads clothes. I learned fast that not eating helped take some of the pain away, but not always, and not eating forced the dramatic weight loss. Physically I looked like I was from a concentration camp, skin and bones. Ribs were showing, my gut was concave and arms and legs had no muscle.
The worst came when I was 'confronted' on the street by a perfect stranger. Remember how everyone says, 'don't judge a book by it's cover'... well this guy had never heard it before. He asked me...and I quote, (because I will never ever forget it) ' Do you have AIDS? '
I remember being stunned by the question because I had never thought about it before, but there it was. I responded by saying no of course and that I have Crohn's, he had no idea what that was and I wasn't about to explain it to him.

I was in my 20's and now weigh a mere 110 lbs (50 kg, 8 stone)

I knew I was skinny, I could see it like everyone else but that day burned into my brain. It's this day I attribute to where I became more of an introvert (turning in on oneself). Not so much "shy" but I purposely started to stay home, avoided going out on purpose, didn't want to see anyone. I never was a party person but had lots of friends, a couple of close ones and a girlfriend. It's amazing what having an illness will do to your social life when no one understands, or wants to understand. It takes a toll on your life physically and mentally. I was with my girlfriend at the time for 3 years and she was there in the beginning when I started to get sick, but after my first two back to back surgeries, she dumped me when I got home from hospital. She said SHE couldn't handle me being sick, only reaffirming what I was thinking, who's going to want me in this condition? I mean, who could blame her, I went from having a toned athletic body (from figure skating and soccer) to skin and bone in about a year. I was still "me" but... not.
Everything starts running through your mind, including "why me?"  What the F did I do in my short life at the time, to warrant such a disease and my now new life? Still does sometimes. Depression goes hand in hand with this disease, and any disease for that matter. No one understood what I was dealing with and now I didn't want to talk about it... with anyone. Even if I wanted to, who was I to turn to? No one I knew had ever heard of Crohn's disease. There was no social media at the time, so I needed to go to the library (it's a place where they have books, LOL) and start researching. But even then, there was not much. No other people, no information, no job, no money, nothing. Talk about isolated.

In the meantime, not only am I dealing with regular symptoms from Crohn's but also the other complications like, kidney stones, fistula's, fissure's, peri anal disease, fatigue, dehydration, etc, PLUS malnutrition. I now know, but I didn't at the time, I was becoming depressed from all that was happening and how everything was collapsing around me. And then, in 1991, I had had enough. I tried to commit suicide.

I was home alone, things were not going well for me personally as well as with my Crohn's, I made myself a rum and coke, grabbed my bottle of Tylenol 3's and laid down on the couch. I remember taking 3 at a time, I don't remember how many I took in the end, but when I started to feel "funny" in the head and light headed, I started to freak out and got scared. I remember calling a Help Line to talk with someone (when I probably should have called 911) and I didn't want to call family or friends, not that I had many friends left. Let me tell you, the "help" line was not much help the woman on the other end of the phone eventually told me that she "had to go now, it was the end of her shift". I remember thinking, "are you fucking kidding me?", but in the end, it turned out to be okay because right after getting off the phone, I started to feel sick and ended up throwing up.

Today, I'm glad it didn't work. Today, I have a good life, married, two kids, a home, a job, etc.
I still have days where, mentally, I need a rest. Physically, I've gained all the weight back (thanks to Remicade), I probably could lose a few pounds now LOL! I still have days I feel pain, discomfort and other complications but I deal with it and move on. I don't have time to worry or dwell about it but I rest when my body says so and when my brain says so.

We all have those days, we all know how you feel and we are all here for anyone who needs help, even just to lend an ear, but we would never say, "sorry, it's the end of my shift, I have to go".

Coming up....Part 5





Sunday, September 1, 2019

Crohnie Quote of the Day

"When a person with IBD says they are having a "shitty" day, they could mean it figuratively AND literally at the same time"


Friday, August 30, 2019

Around the World....33 times

Following up on my last post with the amount of time I have lived with Crohn's disease, here's something interesting...

The earth is 24,902 miles. If you walk an average of 3 mph, it would take you 8300 hours if you didn't stop and you kept up that pace. That's 345 days.  (Quora.com)

So, going back to my previous numbers and factor in those facts, if I started walking around the world the first day I was diagnosed, I would have gone around 33 times by now! 

Another fun fact brought to you by.... well.... for know other reason than to go "hmmmm"

Friday, August 23, 2019

Yesterday....All My Troubles Seem So Far Away

Seems like yesterday anyway, but since my diagnosis, I have been a "professional sick person" and living with Crohn's disease for:

31 years, 2 months and 23 days

that's...

374 months and 23 days...
1629 weeks and 3 days...
11,406 days...
273,744 hours...
16,424,640 minutes...
985,478,400...401...402...403... seconds

So... to sum up.... a really, REALLY long time!!


If you can't already tell, it's a little slow at work today. 😆

.

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! BUT my "go to" protein is smooth peanut butter and I eat A LOT of it!

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