Keep on Living with Crohns!

Well I've finally returned.  There is a huge water leak under our house and this is our fourth day without water.  You never realize how much you need it until it's gone.  Excavaters are digging a 19 foot tunnel under our foundation to get to the leak.  This is how much they dug out yesterday.

Backyard looks like a Rock Quarry

Should be another full day of digging before they reach the leak and then hopefully we'll have some water!

 

So as far as my Crohns.. The doc reduced my Entocort to 6mg per day and I saw an immediate decrease in my QOL.  So I'm not sure if the remicade is doing much.  The plan is to reduce to 3mg per day for a month before my next infusion.  Not sure how that's going to work out. 

 

Apparently I have Anemia from chronic Crohn's disease as well and they plan to give me Iron Infusion Therapy at the same time.  Seems like a long time to wait for the iron.  I'm thinking I need to send my doc an email and let her know what the infusion department is up to and what my status is. 

 

Seems rediculous but you really have to stay on top of your own health care!

 

 

Yay I'm Here! Coming out about my Crohn's Disease

Finally I've started a blog in hopes it may somehow help other Crohn's Disease sufferers know there are others out there like them.  In some way maybe it will help me too because Crohn's is a very lonely disease for me.

I think Crohnies often suffer in silence about so many things that go on with us.  Well I do anyway and it's time I spoke up!

My disease started at age 9 and it took a long time for them to diagnose.  There were no easy breezy colonoscopies back then.  Just horrifying for a child proctoscopes!

It wasn't even called Crohns back then (late 60's).  They called it granulomatous colitis.

I somehow went into remission at age 16 and didn't have another flare until age 30 and it was pretty quickly under control after a short hospital stay.

Fast forward to age 49 (6 years ago) and a Carribean Cruise where I supposedly contracted Norovirus. I've pretty much been sick ever since.

Doing pretty well right now on Entocort and Remicade Infusions.



Third Remicade Infusion - Fingers crossed!

Apparently I need to take a picture when the lights are ON!  (Sorry for the graininess)

I can go into more detail later if there is any interest. Isn't it crazy that after 46 years of this disease for me there is still no cure?

I can't even begin to name the numerous medications I was put on as a kid and in the last 6 years as well.  Really hoping the Remicade will get me into remission.

In my experience Crohn's runs the course it wants to and all the docs can do is try to alleviate symptoms.  No medicine or diet has ever worked for me so we'll see what happens with Remicade.