The Gimpy Colon*

*No, it's not another trendy bar.

The Shoutout…

My health has been poor lately, so I’ve been on a liquid diet since Monday. It’s mostly pain and so, since I’m not exactly malnourished, my GI doctor allowed me to go on Ensures and applesauce to give the gimpy colon a rest. I do feel better with just the Ensures, but it is a tad … sad… that I make actual food for the boys and I get to drink my meals out a bottle… I’m all for a comfy colon though.. so I shouldn’t complain.. but I will anyway… poor, poor, gimpy colon.

But enough of that… I have a few shout-outs I want to do. I’ve gone to several restaurants in the area and also grocery stores with my crazy diet requirements in hand… no fresh vegetables, no fresh fruit, no gluten, no nuts, no seeds, no fiber, no popcorn, no sex, no drugs, no wine, no women, no fun, no sin, no you, no wonder it’s dark…. (That’s a shout-out to my biggest big brother.)

Here’s a shout-out to Pamela’s Products and Giant Grocery Store. Giant is one of our local grocery stores. About a year ago, they opened a new one which has a whole section for freaks like us. Gluten-free, egg-free, dairy-free, all that stuff. There’s a whole row of gluten-free stuff and one of the more yummy lines is Pamela’s Products. Giant has most of Pamela’s products which are currently my favorite of the “mixes”. Granted, I’ve only been gluten-free for a short time. Pamela’s pancake and baking mix has been consumed by the gluten eating men of the house (read that as, they didn’t notice that it was any different from any other pancakes)… Farmboy totally digs the chocolate chip cookies made from Pamela’s pancake and baking mix. I haven’t tried to make the muffins or any of the other recipes on the package, but I keep a package of Pamela’s mix around just in case….. I start eating real food again.

Giant also carries Foods by George which is where I got my very first gluten-free English muffin. I’ve mentioned before that the gluten-free English muffin as created by Foods by George looks and tastes nothing like an American English muffin. I confess, I’m lame and I don’t know what a real English muffin looks like or whether English muffins come from England or if it’s like French fries and only Americans make up these foreign names for things. Last time I was in Europe, I was three. Cut me a break…

…Wait a minute… why am I admitting lameness? I have google… AND Wikipedia… and here’s what I’ve found since I’m so brilliant with search engines… The English Muffin does come from England and back in the 1700s they called it a moofin… which is hilarious. I couldn’t read any more after moofin. I don’t need to know anything more than moofin.

Anyway, like I said before, Foods by George English moofins… taste and look nothing like a regular English moofin. In fact, if I were to do the Pepsi challenge with English moofins by George, I would have to go with biscuit. Not ENGLISH biscuits… I know those are different. I’ve seen Upstairs/Downstairs. But regular American biscuits. So every morning, I eat an egg with some kind of gluten-free spread and a moofin by George. Here’s the package… disregard the spelling of the word “moofin”. I’ll have to have a talk with George about his spelling skills.

Shout out #3 goes to Betty Crocker who has a whole line of make yourself box deserts that are gluten-free. You can get yellow cake, devil’s food cake, chocolate chip cookies and brownies. You can even find them in the baking aisle at the grocery store so I got to feel like less of a freak for about five seconds. I bought and baked a chocolate box cake by Betty herself. I haven’t tried it yet, but I have tried the cookies. They’re good and totally passable as gluten-filled. In fact, I’m starting to wonder why the world needs gluten.

I have a couple of other shout outs but I’m low on time these days. I’ll have to break it into another post.

Cheers!

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The Turkey Box…

Yesterday, I had my fourth Remicade infusion. Remicade is one of those drugs that can best be described as nuclear waste… or poison. It’s basically a bio-hazard, and I get to send it racing through my veins in hopes for a remission from Crohn’s disease. Here’s how it works:

(From http://www.remicade.com) The immune system protects the body by responding to “invaders” like bacteria, viruses, and other foreign matter that enter your body by producing antibodies and putting them into action to fight off the “invaders”. In Crohn’s disease, TNF can cause your immune system to attack healthy tissues in your body and cause inflammation and damage. If Crohn’s is left untreated, it can cause permanent damage to the tissue in the digestive or gastrointestinal tract. Remicade helps put Crohn’s into remission by neutralizing TNF-alpha. Remicade is therefore called a TNF “antagonist” that works with your body’s immune system to block TNF-alpha, reducing inflammation. Remicade targets, binds to, and blocks TNF-alpha in the affected area to relieve painful symptoms of Crohn’s.

…or so that’s what’s supposed to happen…

I was put on Remicade pretty much right off the bat back in December. It’s a crazy expensive drug (about 4k per infusion) so I had to get permission from my insurance to get the infusions. They made with the permission pretty quickly, which always makes me wonder if I’m sicker than I actually feel. So every 8 weeks, this is what I do:

I go down to the local hospital (the one smack in the middle of the city) and go to their Medical Outpatient Unit or MOPU which they pronounce “MOP-YOU”… which I think is kind of cute. The MOPU looks like a big blood bank with those big comfy chairs. No cookie table in immediate view though which was always my blood giving incentive. Each room has four chairs in it (or beds, I think the beds are for the chemotherapy and the more poisony treatments). 1 hour before my appointment I have to call in my weight which is always SUCH A TREAT… you know, being on prednisone and everything… When I get to my appointment, my Remicade is all mixed up and ready for me. I get one of the chairs, which reclines, a remote control and tv that has more cable channels than I have at home, and of course, I always have my busy bag with a collection of readables. The nurse then checks my vitals, blood pressure, checks the lungs, all that good stuff.

After that, nurse starts an IV, flushes some nice saline through, and hooks me up to the Remicade bag. Then, and this is the best part, the nurse asks me if I need anything. That’s when I say “YES!!! I’d like the turkey box please”.

During my first infusion, the nurse asked me the same question, and I asked her what she had, and she went through this heavenly list of things… cookies, chips, sodas, and of course the turkey box. I don’t think the appeal of the turkey box has anything to do with actual taste. I think it’s a matter of someone actually bringing it to me. The turkey box is a turkey sandwich on a roll, with a little cup of applesauce, coleslaw (which I’m not allowed to have anyway) and two graham crackers… AND little condiments… and I’ll just point out right now, that I’m the type of person who likes airline food… and I think it’s also because someone brings it to me rather than me having to go and get it myself. I’m also a big fan of clever box lunch packaging.

So for two hours, every 8 weeks, I get to watch whatever I want on TV… eat my turkey box, and sit with my feet up. If there were spa treatments involved, we’d be on to something here. Yesterday, I watched an awful episode of Kate Plus 8. It’s the first, and hopefully the last time, I ever watch the show. Sometimes I have a person next to me, sometimes I’m all alone. My second infusion involved an elderly lady who REALLY liked to curse, and amused me for the entire time.. as in “I should have been dead years ago… now GET ME SOME SALT!!!!”. Most of all though, it’s two hours of absolutely nothing but sitting.. no one needs to be let out, no one needs dinner… if we’re out of whites… it’s really not my problem, not for two hours… that actually makes it worth it to be injected with poison.

One of the things they make you do your first time out is stay and make sure you don’t have any side effects. I didn’t have anything notable happen the first time out, except being tired afterward. The second and third I was tired and yesterday’s actually went OK. I didn’t feel horribly tired, and my pain decreased a bit.

Is it working? I have no idea. I hope so. I actually like the possibility of having something injected into me that is actually helping. I do feel better than I did a few days ago, so maybe it is working.

If the doctor takes me off of Remicade, I’m going to REALLY miss the turkey box. I suppose I can make up my own turkey box, but it won’t be the same.

My next spa.. er…um… Remicade treatment is in 8 weeks… woot!

Cheers!

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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!

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