You're Gonna Put That Gel Where...??!!

Further to my visit to the surgeon, last week I had my MRI appointment.  I've had MRI's before, so this was old hat to me, nothing new, nothing exciting......or so I thought.
I arrived early, as I always do, and sat in the waiting room with all the other medical imaging "hopefuls", anxiously waiting for your name to be called.  You know that feeling...when the technician comes out and everyone sits up hoping to hear your name cuz you don't want to wait anymore, either because you just want to get out of there, or simply because you don't want to wait to catch something that's floating around in the air. Because hospitals are so clean... not.
My name was called and was handed a packet of paperwork and told to follow the blue line to MRI...another waiting room, good lord.  Not so much of a wait this time, but then had to get changed into the fancy blue "smock" and comfy yellow pants and sit some more in the waiting room.
I got called into the large MRI room which actually is dwarfed by the huge MRI machine and told to lay down while they put on IV into my arm.

Then the lovely news I wasn't told about....

We're going to put in some rectal gel for contrast.  Ummmm, excuse me?  I actually had to get clarification on this because after 30 years of testing, I have never had rectal gel shoved up my ass. I had to explain to the technician that because of my anal stenosis, that might be a problem. There is no way you're getting a finger up there.  Even when I have colonoscopies, they use the pediatric scope and I'm OUT for that! He would have to contact the doctor on call to see what can be done. The doctor showed up and was going through drawers pulling out all kinds of things all the while telling me what he's gonna do....ummmm, nope.  He was getting all technical and explaining how he has this flexi tube with a balloon on the end and then inject the gel, blah, blah, blah....ummmmm...nope.  I then explained to the doctor how I basically only have the rectum left which is attached to my small intestine and if he injects that into me without me doing any colon prep (which I wasn't required to do), he's going to have a mess all over his nice MRI table.  It's funny how quickly he said....

ummmmmm, nope, no gel for you.

2017 WEGO Health Activist Awards

I am happy, humbled and surprised to announce that I am a top 5 finalist for a WEGO health activist award for this blog in the category of Best in Show: Blog.
Thanks to everyone that nominated and endorsed me.
Even if I don't win when the award is announced in October, it really does feel great just to be nominated.

Thanks to the judges and to everyone.

Crohnie Quote of the Day

"Fall seven times. Stand up eight."

A Visit With the Colo-Rectal Surgeon

A couple of weeks ago I was finally able to go see a colorectal surgeon to get another opinion on what, if any, can be done for me regarding the peri anal abscesses and fistulas.

This surgeon is one of the top surgeons around and deals mainly with cancer patients so I was hoping....

My specialist recommended me to her so all my files were transferred over.....all 30 years worth....so it was not a surprise when I walked into her office, the first thing out of her mouth was, "wow, you've had a lot going on"

After a good discussion and small exam, it was her recommendation that what is left of my large intestine, which is barely anything, be removed and have an ileostomy.  Not what I wanted to hear, but not totally unexpected.  She said I would have a better quality of life.

But before all that, I need to go for blood work (check), CT scan, MRI, sigmoidoscopy and then a laparotomy so she have have a close up look inside.  She's concerned about any "hidden" cancers.  Well, THAT made me feel better when she mentioned it!

I haven't posted in awhile because it's a lot to take in right now and even though I've had Crohn's for 30 years, I still now get that feeling like I did when I was first diagnosed.

You try and stay strong, but some days.....

You Might Be A Crohnie

If you need a rest....from resting
...you might be a Crohnie

You Might Be A Crohnie

If you can go months without a flare, but have one as soon as you go on vacation
....you might be a Crohnie

What Else Is Crohns Gonna Do......(*update*)

Went back to my Dr. yesterday to check my blood pressure after two weeks of being on blood pressure meds.  Good news and bad news, for me.

Good news.... blood pressure down and stable at 110/70 (yay!!)
Bad news.... more meds for me to take, probably for the rest of my life.

And even though my blood pressure is fine now, it's always going to be in the back of my mind every time I exert myself.  Something else to worry about.

At least the meds are cheap!!

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What Else Is Crohns Gonna Do......

Crohn's likes to kick you while you're down.
On top of having Crohn's and all the fun stuff that goes along with it, I can now add high blood pressure and psoriasis of the scalp.
The psoriasis has been developing for months and months now and no help from the dermatologist.  It's because my skin cells are overdeveloping but Remicade should be helping with that, hmmm.  My GI has requested a Remicade levels check to make sure the Remicade is still working.  I've tried all kinds of shampoo for dry scalp, but nothing works.  My wife suggested using Aloe Vera, but REAL aloe vera, not the kind that's mixed with a whole bunch of other chemicals.  I found a recipe online which is aloe vera gel (from the plant itself) and coconut oil....mix it together and apply to the scalp.  Let it sit for about half an hour and wash it with a baby shampoo, or something mild.  Worked right away.  It's not gone or anything, but not nearly as bad.  I need to do it every 2-3 days for awhile before giving it a full 2 thumbs up....I've only done it once.
The high blood pressure is new.  At least since last November.  The highest it's been was 157/95 and I've been on meds for almost two weeks and the last time I checked, it was 130/80.  But now I'm tired all the time...MORE than usual!!  Great.
So lets recap.....
Crohns and all the "good" things that come with that like kidney stones, fistula's, fissures, abscesses, pain, dehydration, etc etc etc
High blood pressure
Psoriasis
I wonder what's next.....

You Might Be A Crohnie

If when you get a burst of energy you squeeze in as much housework as you can before getting exhausted and have to rest again...
...you might be a Crohnie

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Yes....I'm Fine

Ah...the proverbial answer to the question, "how are you?" .... I'm fine. 
And it's not a lie.  Not really.  If I wasn't "fine" I'd be in hospital, generally.  
And in that case it would be:

Please rip out
All my
Intestines
Now!

I haven't felt THAT way in quite sometime now (knock on wood) thanks to Remicade, but as we all know, it can change in an instant.  But when I say "I'm fine" it means I'm fine for "ME".
The Crohn's is tolerable and manageable and I'm doing "fine".

Then again, if I'm not "fine" I will probably tell you I'm "fine" because...really....I don't want to talk about it.  So "fine" is the defense mechanism.  Ninety-eight percent of the time, I really don't want to talk about it and the other two percent I'm too sick to talk about it.

And really...if I was asked "how are you?" and I gave a long answer as to why I'm NOT fine...would you really understand?  Or would you just listen politely nodding your head and after I'm finished telling you how well I'm not feeling, you're just going to say, "sorry, I wish there was something I could do or say to make you feel better".  So unless you have the "cure" or have just won the lottery and are giving me some so I never have to work again...

"I'm fine, thanks" 

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