Living With Short Bowel Syndrome AND Crohn's

I wrote 2 articles about living with Crohn's and short bowel syndrome.

You can read them here:

What It’s Really Like Living With Short Bowel Syndrome

Short Bowel Syndrome After Bowel Resection

.

Keep Hydrated with Grosche

With it still summer, Crohn's and IBD warriors need to stay hydrated all the time, especially in the hotter months and even more so if you have an ostomy like me.

Do you want to "buy Canadian" in the current political climate?

Grosche is a Canadian company dedicated to safe drinking water, and when you buy one of their products, you're funding 50+ days of safe drinking water for someone else through their Safe Water Project.

Click this link to get yours today Grosche

. 

Accepting Reality

I know that having Crohn's sucks, I mean really sucks!, but in order to live, you basically have to make the disease your "friend" and live together.  Like any relationship, you're going to have your ups and downs, but there are days that everything is calm. And there will be days that you will hate each other.

Give up the "but."  You know, the "I want to go out, BUT I can't cuz I have Crohn's".  Don't get me wrong, there will be days that you just "can't" because of your illness.  There's a difference. You have to just do it sometimes.  Even if you're feeling a little bit "fine", take that opportunity.


Accept reality.  You have an incurable, chronic disease.  Until there is a cure, you need to live with it and do what you can do make it livable.  It took me years before I accepted the reality that there wasn't much I could do about it.  I could watch what I ate and could "control", sometimes, the symptoms, but not all the time.  When the flare comes, it comes and when it does, deal with it the best you can.  If curling up in a ball is it, then do it.  When the symptoms pass, you get up, brush yourself off and continue on.  If not, it will smother you, take control and consume you.


Like the song by Chumbawamba - Tubthumping

I get knocked down
But I get up again
You're never gonna keep me down

First Gastroenterology Appointment??

I have had another article published on inflammatoryboweldisease.net about what to expect at your first gastroenterology appointment. 

Come read it here:

What to expect at your first gastroenterology appointment

Visit inflammatoryboweldisease.net for more articles regarding IBD

.

What I Do For Crohn's Pain Relief

I have had another article published on inflammatoryboweldisease.net about IBD and what I do to help alleviate IBD pain. 

Come read it here:

What I Do For Crohn's Pain Relief

Visit inflammatoryboweldisease.net for more articles regarding IBD

.

My IBD Glossary For The Newly Diagnosed

I have had another article published on inflammatoryboweldisease.net with my glossary for the newly diagnosed IBD warriors. 

Come read it here:

My IBD Glossary For The Newly Diagnosed

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

.

My Advice On Flares

I have had another article published on inflammatoryboweldisease.net with my advice on flares after 35 years of Crohn's disease. 

Come read it here:

My Advice On Flares

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

Crohn's Disease and Mental Health

I have had another article published on inflammatoryboweldisease.net about Crohn's disease and mental health. 

Come read it here:

Crohn's Disease and Mental Health

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

.

Experiencing a Bowel Obstruction With Crohn's

I have had another article published on inflammatoryboweldisease.net about experiencing a bowel obstruction.  

Who knew carrots could have been the death of me.

Come read it here:

Experiencing a Bowel Obstruction With Crohn's

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

.

Quarantine

We are in Day 9 of a 14 day self isolation quarantine because we were in Orlando, Florida visiting DisneyWorld.
I'd like to point out that quarantine is not that hard, for all of those people whining they cant go out.
Think of the consequences. This virus will never go away if people go out and socialize and not keep distance from others.  I akin it to the old 1980's Faberge shampoo commercial, IF YOU DON'T quarantine...

You infect two friends (2) and they infect two friends (4) and they infect two friends (8), and so on (16), and so on (32), and so on (64)... well, you get the picture. You can see just how fast this virus can spread.

In the 9 days so far, we have done alot of things around the house. We've cleaned out the garage, cleaned gutters, power washed all the cement outside, washed the cars, thoroughly cleaned out and disinfected the inside of the cars, played games, puzzles, watched movies, caught up on tv shows, etc.
I still have to clean one more room, but I have alot of time still.  The point is, don't complain, get things done. Read a book... WRITE a book, whatever it takes.

I'd like to take this time to thank the doctors, nurses and all essential service workers out there on the front line.
I'd also like to thank all those friends and family that have come to our need with groceries, etc. When all this is over, I have alot of lunches, dinners or coffee "dates" to plan.
Everyone needs to do their part at this time. Cover your mouth and nose, keep social distance, self quarantine if needed (or even not), but most importantly, WASH YOUR HANDS !!!

And finally, to all those out there NOT heeding warnings, you don't think you're going to get it... you don't know that. Everyone is susceptible. You could still carry it and pass it without having symptoms. Listen to your Health Officers or Surgeon Generals, and not those who have no idea or any knowledge of viruses or pandemics. Serious times require serious measures.

I am immune compromised and even though I have no symptoms, I am in quarantine with my family.  To be honest, I will still probably stay at home because it's safer. I don't trust others out there in the world. I don't trust they will follow the rules. I am very anxious about my life right now and that of my family.  PLEASE, follow what the professionals are telling you. Certain leaders... well just one actually, *cough* Trump, is making everything worse and I feel for my US family and friends.

Please take a look at links below for COVID 19:

Canada - Health Canada
USA - CDC
UK - NHS

Also, for us IBD'ers, go to your country's Crohn's and Colitis sites.

Canada - Crohns and Colitis Canada
USA - Crohns Colitis Foundation
UK - Crohns and Colitis UK

My final thought on this matter.
To all those out there around the world who think COVID 19 is a hoax?   

Go "F" yourself !!

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.

Crohnie Facts Of The Day

Crohn's Disease is SOOOO much more than just a "pooping" disease.
It can also lead to problems with:

Abscess's
Fissures
Fistula's
Malnutrition
Strictures
Arthritis
Bone loss
Vitamin deficiencies
Skin
Eye's
Kidney's
Liver
Development

Not to mention the mental health problems associated with some, if not all, of these.

Crohn's Baby

Wednesday was like any other day. It's my regular day off, went to the gym, ran errands, cleaned around the house, ate dinner and took my son to taekwondo class. 
After dinner though, I started to feel tightness in my abdomen, not out of the ordinary but a little different than normal. It was bad enough that I had to lay down in the car while my son practiced. After getting home and getting ready for bed, the tightness was worse. I took a look in the mirror and there it was....... my Crohn's baby.
My abdomen was so distended and tight, I looked pregnant.  I tried my normal procedures like laying on my stomach in hopes to maybe relieving the pressure by passing gas....didnt work. I tried having bowels movements (as it felt like I had to go)....didnt work.  I was up and down, up and down, up and down from bed to bathroom for hours before I finally had to give in to what was happening to me.
I had a block.
On one of my trips to the bathroom I started throwing up while I sat on the toilet.  That continued throughout the night and into the morning until there was nothing left to throw up. Definitely a block in MY experience.  Not sure how....but there it is.
Now was the question, do I go to hospital? I need my intestines to rest and the best way is with an IV. I decided to stay home and not eat but just drink water and tea and stay in bed to rest. That seemed to work. Later that night, whatever was causing the block, released. I took over 24 hours, but it felt so much better after that.  I am still sore, but the pain is gone.
It's been years since I've had a Crohn's baby, I hope its years more before I have to experience it again.

Travelling With Crohn's Disease

We are off on holiday for a week soon, so its time to get ready.
The key to travelling with Crohn's?   PLAN AHEAD
Each of us will have our own things to pack or plan.
First I had to book our travel in between my Remicade infusion and enough time to recover (as I always get tired for a day or two after).  With that done, I needed to make sure I had enough oral meds and in their own bottles with the information clearly marked.  I purchased extra travel insurance for someone with a pre existing condition.
We are renting a vehicle and we put my wife as the registered driver just in case either I have to cancel the trip OR something happens to me while away that I cant drive.
Packing is simple, just the usual items, though I also will pack a bed pad, just in case of an "accident" while sleeping. I'll pack all my underwear, for obvious reasons and add antiseptic cream and my "poo-pourii" spray to my toiletries.
The day of travel, I generally won't eat but drink alot of bottled water ( I can't drink tap water).  I will take  protein bar for the plane ride, but wont really eat anything until on the other side and at the hotel.  For this trip, that will be about 10 hours from the time I get up until we get to the hotel.  It's seems like a long time but I dont feel the hunger.  The thought of what "could" happen overrides the feeling of hunger.  After 30 years of living with Crohn's, I've gotten use to watching others eat while I eat nothing.
During the trip I will be very careful what I eat and drink.  If there is no bottled water, I will drink sparkling water, even though I hate the taste.  I don't drink alcohol so thats not a big problem. Things like Coke etc are mixed with water so I dont drink that unless it come directly from a can or bottle.
Food, I stick to what I know.  If I try something different, I ask alot of questions on what is in or on it.  I avoid dairy, so no cream sauces, etc. and no sour cream so I need to make sure they are not mixed in with the food.
And then do it all again for the trip back home.

Check out Healthline.com for tips on travelling with Crohn's

It would be nice to just go on vacation and not have to worry about anything, but this is the "norm" for me now.

Crohnie Quote of the Day

There's a difference between being "tired" and being "fatigued"


.

Crohns Disease Essentials and Emergency Kits

Again, from IBD News Today, a fantastic column by Mary Horsley
I would encourage everyone to follow her blog It Could Be Worse

IBD News Today

Make Your Illness Your Friend

I know that having Crohn's sucks, I mean really sucks!, but in order to live, you basically have to make the disease your "friend" and live together.  Like any relationship, you're going to have your ups and downs, but there are days that everything is calm. And there will be days that you will hate each other.

Give up the "but."  You know, the "I want to go out, BUT I can't cuz I have Crohn's".  Don't get me wrong, there will be days that you just "can't" because of your illness.  There's a difference. You have to just do it sometimes.  Even if you're feeling a little bit "fine", take that opportunity.


Accept reality.  You have an incurable, chronic disease.  Until there is a cure, you need to live with it and do what you can do make it livable.  It took me years before I accepted the reality that there wasn't much I could do about it.  I could watch what I ate and could "control", sometimes, the symptoms, but not all the time.  When the flare comes, it comes and when it does, deal with it the best you can.  If curling up in a ball is it, then do it.  When the symptoms pass, you get up, brush yourself off and continue on.  If not, it will smother you, take control and consume you.


Like the song by Chumbawamba - Tubthumping

I get knocked down
But I get up again
You're never gonna keep me down

All 'Pee' and Clear

Sorry that I haven't updated, but have been dealing with my kidneys.  Unfortunately, kidney stones are secondary to Crohn's Disease and I have been suffering through them on and off for 25 years now.  Now I have been researching a low oxalate diet.  Most of the foods and drinks that are high in oxalates I don't take anyway, but now I'm learning that if I were to have something that is higher, then I need to eat, or drink, something with calcium.  Calcium is the key to lowering the oxalate.  BUT, I normally don't drink milk, etc. because of lactose intolerance, so it's been interesting researching what foods have calcium. 
I have the stent removed now (that was "fun") and no longer have the flank pain from my kidney.  The doctor told me it was one of the longest surgeries she's ever done with stones, just over an hour. I had 4 and one almost 1.5 cm.  I had to keep the stent in for a week and a half, but she was able to get them all by either using the basket or breaking them up by laser.  I like to say, "all 'pee' and clear".
I have been taking my time off writing more of my book.  I got the title copywrited and didn't realize when I started writing, that it would be such a long process trying to remember everything over the 27 years of my disease.
It's coming along though...

Crohns Tips

Did you know that the emulsifier, polysorbate 80, is in the flu vaccine you get every year...??

Crohn's Tips

Crohn's Tip #75 - "make a list of every hospital visit, when, why, meds, doctors and take it with you whenever you go in to emergency"