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

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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

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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

Dehydration

I've posted about dehydration here before, but I think I might go in to more detail after being asked a few times via email....thank you for all the questions!

Let's start by saying, I have been to hospital a few times for dehydration and have been admitted for days at a time.  It's not like I stopped drinking, just not enough.  Turns out, I had moderate to severe dehydration.  I my case, I was very tired, exhausted, thirsty, very dry mouth, low blood pressure, rapid pulse and zero energy.  Now, having Crohn's, I thought it was my Crohn's.......yeah, no.

I was in hospital the last time for dehydration for a week getting IV fluids.  An easy sign to see if you are getting enough water is your urine.  The more yellow it is, the more water you need.  If it's running clear, you doing good!  Oh yeah....if you're NOT peeing at all, NOT a good sign.

I've also learned that drinking 8 glasses of water a day, isn't necessarily true.  It's when you drink.
Think of your body as an engine.  When you get up in the morning, drink a glass of water, NOT coffee, etc.  You have to get your body 'started' for the day and a glass of water is the best thing to do, as well as the last thing before you go to bed.

I myself try and drink at minimum 80 oz every day and more after a workout, any physical activity or when it's hotter outside.

So, here is a list of symptoms...thanks to the Mayo Clinic

Mild to moderate dehydration is likely to cause:

• Dry, sticky mouth
• Sleepiness or tiredness — children are likely to be less active than usual
• Thirst
• Decreased urine output — no wet diapers for three hours for infants and eight hours or more without urination for older children and teens
• Few or no tears when crying
• Dry skin
• Headache
• Constipation
• Dizziness or light-headedness

Severe dehydration, a medical emergency, can cause:

• Extreme thirst
• Extreme fussiness or sleepiness in infants and children; irritability and confusion in adults
• Very dry mouth, skin and mucous membranes
• Lack of sweating
• Little or no urination — any urine that is produced will be dark yellow or amber
• Sunken eyes
• Shriveled and dry skin that lacks elasticity and doesn't "bounce back" when pinched into a fold
• In infants, sunken fontanels — the soft spots on the top of a baby's head
• Low blood pressure
• Rapid heartbeat
• Rapid breathing
• No tears when crying
• Fever
• In the most serious cases, delirium or unconsciousness

I'm hoping this helps a little!!!

Get Your Belly Out

If you live in the UK, please be aware of this great organization Get Your Belly Out. This charitable organization does a lot for the IBD community in raising IBD awareness, social opportunities, helping in practice and policies, supporting research and creating a safe online space. They may be located in the UK, but a lot of what they do help support the global IBD community.

Their site covers a lot of information from donations, shop for GYBO products, support, events and research.

They are also active on Twitter, Instagram, LinkedIn and Facebook.

I encourage anyone either living with IBD or is supporting someone with IBD to check out their site or social media and, if you can, make a donation.

~Vern

"Well, That's Not Very Ladylike" A Memoir

I recently finished a very heartfelt book (written by my good friend Jennifer Lock) about the struggles, the tears and triumphs with living with a chronic illness along with mental illness. It is very well written with a good sense of humor. 

I have known Jenni for many years and we have talked and supported each other through these years, even though we have never met, but even I never realized the struggle and pain she was having. One chapter had me almost in tears. This will give you and understanding what someone with a chronic illness goes through. Crohn's disease is so much more than a bowel disease and everyone who reads this book will get that understanding.

You will read about Crohn's disease, fibromyalgia, mental illness and suicidal tendencies and the struggle to deal with coming out of it all.

This book can be found online on Amazon, Barnes and Noble, ImagineWePublishers, etc.

A must read for anyone with a chronic illness.

Funny IBD-related TV Ads

It's funny how some TV commercials can directly relate to IBD and some of my favourites are with the drinkable anti-diarrhea vaccine, Dukoral. 

Like this one... "Funny Walks"

https://youtu.be/XxK4tAbAeR8?si=YpdSjgfKVz-qVWNX

I think I have done all these, what about you?

Working With IBD: I Am Reliable, but My Health Is Not

Come take a look at an article I wrote about how coworkers and employers feel about my IBD.

Working with IBD 

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IBD Glossary

Here are a few helpful words you will need navigating your IBD diagnosis.

IBD glossary

Another New Normal

I have had another article published on inflammatoryboweldisease.net about a new normal after having permanent ostomy surgery. 

Come read it here:

Another New Normal

Visit inflammatoryboweldisease.net for more articles regarding IBD