The Latest… (Part Two)

So.. moving right along. …

I had another colonoscopy this past August.  This scan actually looked worse than the scan I had when I was first diagnosed.  It kind of proved that Humira was not making things better, so I have been switched to Cimzia which I started two weeks ago.

Cimzia is also a shot.  A really painful, sort of freaky shot.  As I mentioned before, I wondered why Humira was a spring loaded shot.  It’s probably spring loaded because the maker of Humira saw how they administer Cimzia and decided not to scare the crap out of people.    The needle for Cimiza is about an inch long and is visible, which is not the case with Humira.  Humira looked like a giant highlighter pen with a button on the top.  You just put the end of the pen on your stomach and press the button.   I saw nothing.  I felt pain.   It is a spring loaded shot after all,  but I saw nothing, which apparently makes all the difference.

Call me a wuss, but the minute the nurse pulled out the needle to the Cimzia shot, I blanched and told her that I was absolutely sure that I could never poke myself with that thing.  Not only that, the loading dose for Cimzia is one shot in either side of the stomach or thigh, so I would have to poke myself twice.  To make it even more fun, Cimzia has the consistency of jello.  So you have to flick the needle to watch a little bubble rise to the top, and then when the needle goes in, you have to press the plunger slowly so all that goo goes into the body.   THEN, you have to wait 10 seconds with the needle in your thigh and then you can pull it out.

Humira was doable… for Cimzia, I’m going to need a professional.

So off I went to find a qualified person to give me my Cimzia shots.  Talk about finding a needle in a haystack (get it?).  My GI doctor could do it, but after taking the first shot, I quickly found that I need to sleep after taking a dose of Cimzia, so best if I take it right before I go to bed.  I called my local express clinic.  They told me that I could only get the shots there if the attending doctor prescribed it.  I called my pharmacy, which was a long shot, but they do flu shots, so maybe they could at least point me in the right direction.  Basically they told me that, by law, they aren’t allowed to administer injections (except flu shots).  They even called around and thought up some good suggestions.  I ended up at my kid’s bus stop asking if anyone was a nurse or an LPN, or a diabetic or a heroin addict… or someone who is good with knives or needles, or pointy objects.

I finally did find a qualified person to administer my shot.  In the event it’s illegal for this qualified person to administer my shot, I’ll keep her name and affiliation under wraps… but know this…  I am eternally grateful to you, qualified person, for there’s no way I was doing this on my own.

My first shot of Cimzia was a little more like shooting up a sleeping potion than a medication given to calm down my Crohn’s Disease.  I took the first dose on a Thursday, was really sleepy Thursday evening, went to bed early.  Was ok on Friday probably because my kid’s birthday party was that evening and I had to be in tip top shape.  Parenthood will do that to you no matter how you are feeling.  Then Saturday, things got really fuzzy.  I somehow made it to Downingtown for my kid’s soccer games,  I actually don’t remember much about that ride.  Then I came home and slept until the following day.  On Sunday, I went to church, came home, and then proceeded to sleep and sleep and sleep.  But then Monday I was much better.  I contacted my GI about it and he didn’t have a definite answer as to whether or not Cimzia caused all of this or not.

The second shot was a few days ago.  I went to Qualified Person to have it in the evening so I can ward off this sleeping thing I have going.  It worked.  The next day I wasn’t very sleepy, but none of the Crohn’s symptoms went away.   So I may be injecting myself with jello for no reason at all.

Believe it or not there’s more … There’s MORE? You ask?  Yes, but I haven’t written it yet and I’m really trying to catch up here…

Onward!

The Latest…

I guess a year and a half away from a medically targeted blog could mean so many things… or maybe just two things.  That the blogger is doing really really well and doesn’t want to talk about having Crohn’s, or that the blogger is doing really really bad and doesn’t want to talk about having Crohn’s.

For me, it started out that I was doing really well.  I visited my nutritionist, a SUPERHAPPYGALNAMEDJENNY.  Jenny was very enthusiastic about helping people who can only eat air and water come to grips with their lot in life.   I got a handle on the gluten free diet and honestly started to feel a little more like a healthy person.  Lost a little weight, felt a little better, walked the dog.   That lasted for about a month or so.  Then, a year ago, in July, things started going… dark.

It started with joint pain.  You know when you start working out again after a long stretch of time, and there’s that achy pain that goes through your joints the following day? Imagine that in every single joint in your body, every day, all day long, for no reason.  If you look at your hand, there are three major bendy places in each finger, two or three in each toe… I never gave much thought to any of that… until moving my pinky toe actually caused me to flinch.

I guess on the upshot, I have a very sedentary job, so it really only hurt to move the mouse around.   Other than that, I read… all. the. time.   I managed to start and finish the entire Twilight series (and watch the movies) The Hunger Games series, and of course, the Fifty Shades of Grey series along with all of the FSOG spawns.  Some of those were so bad, I actually felt worse for the author than for myself, which was what I was shooting for in the first place.  So it was win win.  I made it to Delaware to visit some friends, and luckily, they let me float around in their pool the entire time…  very nice for the joints.   I took a bunch of pain killers each night and hoped for the best.  But it was pretty pathetic and sort of sad at the same time.

At the time, I was still on Remicade.  (Note foreshadowing)  I told the nurses that hooked me up about the joint situation and they gave me that smiley face chart that tells them the level of pain I was experiencing.  I picked number six.  Which is like a sad face trying to be a happy face.

As the Remicade was dripping through (it takes about 2 and a half hours) I could feel my joints loosening up.  It was wild.  Kind of like when I was in the hospital two years ago, begging the nurse to kill me.   Whatever she injected into my tube was like some sort of magic juice.  So after every Remicade appointment, I would dance myself out of the hospital, happy and thrilled with my new found flexibility.

But then 4 weeks later it started again.  I would get the Remicade, feel fantastic, go home, and then 3 weeks later, the same thing happened.  I would gradually become an invalid.  It was a horrible, helpless feeling which went on for about 6 months.  I wasn’t happy or fun to be around at the time.  If you saw me during this time and I was just standing there, (or just sitting there), it’s because I couldn’t move.

Luckily, I have a stellar medical team who went to great lengths to figure out my problem… and figure it out they did.  I was diagnosed with drug-induced lupus erythematosus last January, which thank God, is not permanent.  The GI blamed it on Remicade and switched me over to Humira.   Unfortunately, I was informed that I would probably get lupus again because that’s what happens with these kinds of drugs.

Humira wasn’t as fun as Remicade. There’s no turkey box, no nice nurses to talk to, no two hours of uninterrupted, brain depleting, televised crap for me to enjoy.   Instead, it’s a spring loaded shot of medication straight into my stomach.  At the time, I wondered why they had to spring load it.  Either way, with the first shot of Humira, the joint pain started to go away.  Hopefully, never to be seen again.  That part was great.  The not so great deal was that all Crohn’s symptoms, the fevers, the stomachaches, the nausea, the whole stinky gamut came back.  I didn’t notice any instant relief of my Crohn’s with Humira.   I will note though, that many of my friends with Crohn’s have a lot of success with Humira.  That just proves what a weird bunch we all are, and how totally aggravating this disease can really be.

After I went on Humira, I visited with the GI doctor who wanted to immediately put me on steroids.  We spoke.   I reminded him of my problems with Predisone and Entocort.  Long story short,  I got put back on steroids (I know, right?) and surprise surprise!  I had nothing but grief for the next six weeks.  When I went back to the GI doctor, I was an unintentional 15 pounds lighter and feeling pretty awful.  GI was unimpressed with this past round of steroids so I, slowly this time, weaned off and now I’m steroid free… again.

I’m going to end there in the interest of getting the rest of this story out in a timely manner.  There are lots of exciting things coming for me to share, a death defying colonoscopy, a trip to the sweetest place on earth, and a very special episode of The Gimpy Colon Goes to  Philadelphia! Stay tuned!

Cheers! and be well fellow Chronies

The Quiet…

The Gimpy Colon has been quiet. Shhhhhhh hear that? That’s the sound of a sleepy gimpy colon. I am truly grateful. And it’s been a busy fall so far. A lot of research has gone into the theory that most Crohn’s fails happen during periods of stress. But for some reason, I’ve been able to escape the nasty effects of my gimpy colon. I say that very quietly with every finger and toe crossed for good measure.

In fact, we are almost at a year since this whole debacle started. On October 3, 2010, I took our son to a birthday party which was taking place at the karate center just a few walkable minutes from our house. I came home, ate some leftover Dominoes pizza that my friend, Butter (we call her that because of her strange insistence that all baked items that pass her lips be made with butter and not margarine or any of those other fancy lards) and I had enjoyed the night before. I sat down on the couch to enjoy a non G rated movie for once and that’s when the pain hit.

The pain was on my lower right side and radiated around to my back. It reminded me of labor pains but were not intermittent… meaning it was a constant totally raw, totally outrageous pain. I tried switching positions, I tried walking around, I tried the bathroom… I finally gave up and went out to the carriage house to find the Farmboy. He immediately figured it was appendicitis and ran inside to get his wallet and keys.

On the ride to the hospital, I instructed the Farmboy to drop me off at the hospital and go and get the boy at the birthday party when the party was finished. Farmboy was clearly not liking those instructions, but was willing to listen to last requests… It’s funny, today we have a host of people in the neighborhood who could have taken care of the boy at this time, but just one year ago, there wasn’t a soul… consider this a public service announcement for the usefulness of school bus stops.

Anyway, we get to the hospital. Farmboy drops me off and speeds off to get the boy. I hobble into the ER and immediately ask the front desk person to kill me. She refuses to comply, and instead takes my information. At that minute, a man comes up behind me from my former church with a big ole’ “Hey how ya doin’?” I say that I’ve been better and hope that he goes away.

Now the pain I was having was the kind of pain where no speaking could happen… It hurt to speak, it hurt to hear people speak to me, it hurt to try and think of answers to questions… it hurt, it hurt, it hurt… so this man proceeds to ask me if it’s my son who is here for emergency care… I guess he didn’t notice me hunched over in outrageous pain. Then he asks me where I’ve been. I tell him I changed churches and I know I sound just like William Shatner… I. Changed. Churches. Then the guy asked me why I switched and that’s when God intervened and had the nurses call my name.

I get taken in a wheelchair to the triage area where they take my blood pressure and temperature and I guess figure out how serious my case is. Luckily (or unluckily… whichever…) my blood pressure is in the toilet. At that point, I’m basically waiting for permission to pass out. I get taken right to the back. Someone is there right away to assesses the situation. I get a nurse, the most beautiful nurse in the whole wide world, with a big giant needle… she fixes me… that nurse… with Toradol. Some fantastic pain stuff.

After that I get wheeled in for a CAT scan. The medical people are figuring that I have a kidney stone. I really don’t care at that point. They cured my pain. But, I go along with their silly tests…

And so, after a month of test taking which usually resulted in the doctor calling me THAT DAY with the results and having me take another test, we finally got my diagnosis… Crohn’s Disease…. Five months later…. Celiac Disease…. One month after that… Adrenal Insufficiency…

Memories….like the corner of my mind.

Anyway, here we are at today. I’m off Prednisone. I took a test to check my adrenal gland and find that it’s working pretty well. All my levels are good. I am currently weaning off Ultram which is kind of a funny story…. I got my prescription and actually forgot what Ultram did for me. It was for pain… well, I haven’t had much pain lately, so I thought.. I’ll just stop taking it… really bad idea. I spent two nights wandering around my house unable to sit… it was anxiety to the nth degree. So I started taking the Ultram again and went online to see what the deal was with getting off this stuff.

All the google entries talked about going to rehab, and taking other drugs to counter the Ultram and honestly, I could use a good rehab right now… one that has a spa. Anyway, I ended up calling my GI doctor. They are sending me my wean schedule tomorrow. Also good stuff.

Remicade is going well. I hope I get to stay on it. I know last year my GI doctor wanted me on Humira which is just a quick injection (I hear it’s painful though). I totally look forward to my turkey box, my chit chat with the nurses and watching Little House on the Prairie uninterrupted.

This November I get another colonoscopy. One of the joys of having Crohn’s disease is you get a colonoscopy every year. I can’t wait to see this year’s colon pictures compared to last year’s! And here another public service announcement from the Gimpy Colon… if you are over whatever age they want you to get screened for colon cancer, then for God’s sake man! Get a colonoscopy. The prep is good because you get cleaned out. They give you nice, fun, sleepy drugs, and they give you graham crackers when you come out of it. AND you get to find out what your colon looks like on the inside… it’s win win if you ask me.

Today’s Glutie Award goes to Molly’s on Main in Landisville, Pennsylvania. Sadly, we found out on Tuesday that Molly’s has closed its doors. Some gals that work there are trying to get it opened back up. Apparently the owners have decided to close it up (reasons for that are still unclear). The staff at Molly’s were great with my gluten-free bread. They aren’t “gluten-free” per se, but they are very accommodating and that’s all us Gimpy Colons can ever ask for.

Until next time… I shall try my darndest not to be such a stranger… of course, I don’t know if I can promise that. The boy has started travel soccer you see…

Be well!

The Bizarro World…

Maybe I should say.. The Opposite World.

A few days ago, I got a phone call from my Endocrinologist’s office saying that there was a cancellation and I could come in to see him on Friday (which by the way, is today). I was told that when I did come to see him, it would take about 3 hours total from start to finish. I was also told that he is thorough.

So I collected magazines for my busy bag and headed off to the endocrinologist today at 10:05 a.m. I finally actually got into the room at 11:20 a.m. and was seen somewhere around 11:45ish.

Dr. Endo is a nice guy, likes chit chat, and likes to tell you what is crap and what isn’t. Very direct… and it turns out, super thorough. He wanted to know my entire story from start to finish, from me, even though all of the information, my hospital visits, pictures of my insides, blood test results, notes from three different doctors are all right in front of him on the computer. Long story short, it turns out that my cortisol problem may be a problem and may not be a problem. First, I have to wean off of prednisone verrrrrrrry slowly. According to my calculations, I won’t be off prednisone until August. After that point, I have to take a test to make sure I’m actually producing enough cortisol. Apparently, there’s a difference between making enough and making what you are supposed to make. So we’re going to find out about all of that in October. If I’m not making enough cortisol, then I’ll have to take a pill. You know… more pills.

The reason I call this post The Bizarro World or should call it The Opposite World (but I think that the Bizarro World episode of Seinfeld fits better), is because ever since I was diagnosed or sometime after I was diagnosed:

1. I was told that I cannot have fresh fruits or fresh vegetables.

2. I was told to “try” not to even have any cooked vegetables. You know, if I happen upon a pile of cooked vegetables and I fall over and some of it accidentally falls into my mouth, it’s not a big deal, but try not to let it happen again.

3. I was told not to have anything with a lot of fiber in it. Two grams of fiber was too much fiber. Did you know that EVERYTHING has fiber in it? It’s all the rage.

4. I was told that my dramatic weight gain due to the prednisone pleased the doctor… pleased him. So many of his Crohn’s patients are so thin and malnourished. I have room.. ROOM to I guess feed off myself before I get really sick…. I dunno… I’m in a strange part of the planet where fat is good. Bizarro world.

5. See number 3 for emphasis…

6. I was told to “try” not to go to the gym too much because it would distrub the healing process. I can walk the dog around the block though.. but don’t get winded.

7. And today makes the list EXTRA bizarre. I was told (and I have it in writing for all you doubters) that if a salt craving comes along I am to give in and eat the salt… people who know me well, know that’s bizarre…

So if you add all of this stuff up, the inability to eat pretty much anything healthy, instructions to not exercise, and finally, my favorite… “Hey Gimpy! EAT MORE SALT”.

I know what’s coming next… “Hey Gimpy! Quit your job and play Mario Kart all day… it’s good for your colon!”

I have to go pick the kid up from soccer practice… let’s hope I don’t wind myself on the way to the car.

Cheers!