Crohn-fucius Say......

I'm channeling my inner wisdom and introducing you to Crohn-fucius

Crohn-fucius say, pain in ass is literal, not figurative
Crohn-fucius say, may your toilet roll always be full

New Drug, A Crohn's and Colitis Breakthrough...????

Looking over the Internet, I came across an article about a new drug that's in Phase III of research and could be available within the next couple of years.  The drug is called Vedolizumab and I found out about it through a newspaper article in The London Free Press in London, Ontario, Canada.

As a Crohnie, I get "excited" about news of a new drug, or drugs, to help treat this awful disease.  BUT at the same time, I am very wary and don't get my hopes up until I see results.

Fingers crossed...

Funny Thing Happened At The GI Office.......

I had my 6 month check up with my Gastro this week and basically....I still have Crohn's.

During my 15 minute chat, I discovered that I was actually contributing to my dehydration.  Yea, go figure.  Here all this time, I've been drinking tons of water, but I was forgetting one important thing.....I also need salt.  Yep, salt.  And when you think about it, it's true.  When you go in to hospital and they re-hydrate you, they give you basically salt water.  And all these years I've been avoiding salt.  Well you learn something everyday and after over 20 years of Crohn's, apparently I'm still learning.  So, now I snack on saltine's (with peanut butter) and a shake (or two) of salt on my dinner.  I still have to drink though as well.   I'll let you know if it works.

She can see from the tests that the Remicade seems to be working for the most part.  It has eliminated the pain but I still haven't gained weight.  Then she proceeded to tell me that I may have "topped out" at my current weight.  I may never get bigger than I am.  She recommended Carnation Instant Breakfast, but also made suggestions on different ways of using it, like in yogurt, soups etc.  Even watering down Boost and drinking it throughout the day instead of all at once.  I find that if I drink one of those little bottles, I'm heading to the bathroom and "urinate out my ass"!  So it looks as though I'm going to be stuck at 145 - 150lbs.

Other than that, I'm going to get my colon scan in Sept to get a closer look to see if the Remicade is working......let's hope.  Last time, which was almost 2 years ago, she couldn't even get the tube inside a few inches from all the inflammation and scarring. 

Let's hope there's light at the end of the tunnel.

Crohnie Quote Of The Day

The best thing about the warm weather?  The warm toilet seat in the morning.




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Crohnie Quote Of The Day

Sometimes good things fall apart, so better things can fall together.




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Remicade : Day 281

Closing in on a year of Remicade and I do feel better, but I still have 'minor' problems like abscesses and I ache all over.  Especially in the muscles and joints, to the point where it makes it difficult to walk sometimes.  I see my GI in a couple of weeks so maybe she has an idea what's going on or maybe my infusions get switched to every 4 or 5 weeks.  The problems always seem to get worse as the infusion nears....

well now I'm all filled up with the 'liquid gold' and now let's feel good for another 6 weeks, til the next fill up.

Crohnie Quote Of The Day

It was asked on Twitter the other day.....

"How do you feel about your IBD? is it a gift or a nightmare to you? please share your thoughts."

So, from that, I have today's quote of the day from my personal experience...



"If it weren't for my Crohn's, I wouldn't have my lovely wife and our two kids"






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Urinating Out My Ass

We Crohnies are a talented bunch.  We can eat and eat and eat, and not gain weight, we can lay in the fetal position all day long, we know where every bathroom is in the world, we can inflate our abdomens like a balloon simply by doing nothing and we can urinate out our asses! (or so it feels like anyway)

The latter I experienced this weekend during my 6 year olds birthday party.  About half way through, I started having to go to the bathroom and by the time the party was done, I had been 3 times and went 3 times more before bed.  Six times in the night and twice more in the morning before starting to slow down to a Crohnie 'normal', or at least 'normal' for me.  It's now lunch time and I'm starting to NOT having to go to the bathroom.  And yes, before figuring out what had happened, I was literally 'urinating out my ass'.  It was just like water.
Unfortunately, doing this causes dehydration, which I am experiencing today.  Weakness, dry mouth, exhaustion and thirsty.  I have been sucking on Jolly Ranchers to help.
The culprit...??  I thought at first it was the icing from his birthday cake ( my wife made a great snake cake with green icing and Oreo cookie crumbs as 'dirt'), as I hadn't eaten anything else prior, but I've had icing before and not had a problem.  The key here is the fact it was 'green' icing.  Yep.....food coloring (or the combination of icing and food coloring)  I had forgotten about that.  It's happened to me in the past, but as I'm doing better on the Remicade, I didn't think anything of it to eat the cake.
Well, after almost 24 hours, 14 bathroom visits, a couple of Tylenol 3's and enough water to fill a small lake, I'm starting to feel better.

The moral of the story?  Don't eat icing with food coloring unless you want to urinate out your ass!!


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Crohn's and 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.

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!!!

Crohnie Quote Of The Day

"Learn to appreciate the things you have before time forces you to appreciate the things you once had"




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