The New Guy…

While I applaud my efforts to try and catch up on two and a half years of blog posts, I’ll stop clapping, bring you up to speed and then go forward from there. I’m so ambitious… in my head.

So in November 2013, I had a resection, had a pretty easy time of it, got the morphine pump, left the hospital, ate lots of Vicodin, weaned off of Vicodin, went on Cimzia (which is a whole ‘nother post) and had a blissful two and half years of remission with a few flares sprinkled in there for good measure.

I started eating healthy, I started exercising. I even ran three 5ks and really enjoyed every one. Really, I even ran one on vacation. Then in March 2016, everything went down the crapper. (Pun!) I was inflamed, wiped out, foggy, fevery, and my stomach was KILLING ME  I was moved from my original GI (who I really liked) to a new specialist.   He’s a nice guy and he looks a little like my brother, Paul.  He had me do a few tests, colonoscopy, CT Scan, etc. and put me on 6-MP (which is also called Mercaptopurine for those who speak medical).  I was on that and Cimzia through most of the summer.  I was sort of feeling better and began to eat a few too many salads and ended up in the hospital for three days with a alleged obstruction.  I escaped the hospital without having to have surgery and began a very real fear of raw vegetables. I don’t know if there is a name for fear of vegetables, but there it is.

After the hospital, I lived on a steady diet of mush and garbage….the more highly processed the better, but it didn’t seem to help at all. Still in pain, still foggy, exhausted and afraid of vegetables and did I mention the pain?

So fast forward to two weeks ago. I started a new drug with the 6-MP called Entyvio. It loads just like Remicade, but it takes way less time to infuse it, maybe 30 minutes. I get a loading dose, then two weeks later another dose (that was tonight) and then I get another dose in 4 weeks and then another 8 weeks after that and then every 8 weeks thereafter. So far, I’ve had no major side effects except feeling very strange, like goofy? and I also haven’t had any improvement to write about.

I found an Entyvio support group that has been instrumental in navigating my way through taking Entyvio. It seems that it takes several months for Entyvio to take effect if it even does in the first place. I’m so very grateful for the folks over there. If you are on Entyvio or considering going in on it, I urge you to ask for membership. It’s called Entyvio Warriors and it’s on Facebook.

Until next time!

The Path to the Semicolon…

***THIS BLOG POST WAS DRAFTED IN NOVEMBER 2013.  I’M GOING TO MAKE AN EFFORT TO MAKE UP FOR THE ALMOST THREE YEARS OF BLOG POSTS WHICH SHOULD BE GREAT NEWS TO MY MOM AND THE THREE OTHER PEOPLE WHO READ MY BLOG.

Whelp… in approximately 37 hours from now (give or take), I’ll be going under the knife for the first time for my Crohn’s disease. I’m told from some of my fellow Crohnies that I’ve had a good run, which is what most people say when you’ve died at the age of 100. But whatever, I’m currently sitting here thinking of things I might want to eat because in 3 hours or so, I won’t be able to eat anything that anyone would consider food until I wake up from surgery sometime on Monday afternoon.

But let’s back up. I did promise to tell you (all three of you including my mom) about my trip to Philadelphia to see the specialist. As promised, Butter (not her real name) accompanied me to my appointment. She is skilled in the ways of Philadelphia traffic and also in the ways of Philly specialists.

I arrived with a huge stack of my stuff from the past three years. Information, tests, results, copies of disgusting pictures of my colon, lists of medications, and stupid food journals which are really funny during a flare….

Breakfast: Rice.
Lunch: Ensure.
Dinner: Rice.

The specialist was a nice guy. We had a lovely opening discussion about heating systems (???). He asked me some questions. I answered them. He wanted to know why I didn’t go on a certain class of drugs (the Mexotrexate and 6-MP, etc.) and I couldn’t remember the answer to that. I found out that the gold standard diagnosis for Celiac has either changed or I was misdiagnosed or I don’t have Celiac and am just gluten intolerant. That was some interesting news.  I actually chose to ignore him because I am gluten free anyway – for the most part – so it really doesn’t matter.  Although after talking with my GI doctor he swears up and down that I have Celiac disease.

He also said that I might want to wait on surgery and try the mexotrexate or something in that class. I wasn’t totally on board with that, just a feeling, and took his information and summary. Butter and I ate at this nice sub place and headed for home. In a bizarre twist, I forgot my pain meds before leaving the house, which meant I was in a world of hurt going home. It was times like those where I just wanted to do the surgery myself. While I was in the car, I called my GI and told him what the specialist told me. He called me back while I was still in the car and told me that the part of my colon that is being removed was in such bad shape, he didn’t think the mexotrexate was going to help anything at all.  I was glad because in a funny way, I was all set for my surgery, I had people taking care of my kid’s soccer practice, Farmboy’s business was looked after, my mom was coming to feed and clothe anyone who was living in the house at the time of surgery.

As of the writing of this post, I’m 7 months out from surgery. I hate to be a big fat spoiler but the patient survives and … well lives to write about it.

To Be Continued….

The Ham Sandwich…

I put that title there because I wish I could have one.  But alas, nothing is going down properly except rice and mushy things, like… rice.

Lots of things came out of my last colonoscopy.   I got switched to Cimzia from Humira.  I was taken off Pentasa, and I got two referrals.  The first was to a surgeon at Penn State Hershey, and the other was to a Crohn’s specialist at the University of Pennsylvania.  I think this is a slick way of saying…  the Gimpy Colon baffles all….

I was happy about the surgeon referral which is a 180 from the attitude I had when I first diagnosed.   Crohn’s disease doesn’t just affect the digestive system.  It causes pain.  Lots of pain.  It different for different people.  All CD sufferers are different.  Mine is in the lower right side right around the appendix and it kind of curls around to my back.  My GI doctor described it best when he said it feels like a toothache.  Kind of a raw pain that’s not so debilitating that you need immediate medical attention, but bad enough to keep me from sleeping or walking, or wanting to leave the house.   So I take a lot of pain killers.  My favorite is Ultram, but I hear my liver is going to explode from taking too much of it.  Vicodin is my second favorite, but I can’t drive with Vicodin. That said, I’ve had enough with all of this and am willing to give surgery a go if that’s what everyone thinks I should do.  If it ceases my dependence on pain killers, even better.

Farmboy and I went up to visit the surgeon in Hershey the other day.  He was a nice enough guy… for a surgeon.  He said that since my terminal ileum is such a mess and it’s really just that area where most of my troubles are, that doing a ileocolectomy will be my best option.  We went over everything the surgery entails.  Recovery time, things like that.  The surgery is scheduled for a date in November so that I can still go to see the specialist in Philadelphia.  I’m pretty sure I’m still doing the surgery, but since the surgeon I’m using and the Philly specialist know each other, I can get a quick second opinion and also discuss with Philly guy what the best course of action will be after the surgery is over.

The surgery is scheduled the week before Thanksgiving week which doesn’t bother me at all.  What does bother me is that the boy has a big soccer tournament that Saturday, so I have approximately five days to recover enough to hobble onto a soccer field and sit myself down on one of those fold-a-chairs.  Of course, there’s a shot that I won’t even be released before that time, which means all of that fretting about making the soccer tournament is moot.  So it goes.

In a few weeks, my BFF, Butter (not her real name) and I will be taking a road trip (the first one we’ve taken in zillions of years) over to the city of brotherly love to meet with yet another member of my lucky, lucky medical team.  Because Butter and I rarely do anything that doesn’t end up in some kind of usually bizarre story, often but not always, involving potatoes… I’m sure I will have a tale to tell.

Stay tuned!

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 Fatty Liver…

I got my CT scan results today… here they are… basically, they don’t know what is causing the pain. My kidneys are and have always been pretty goofed up, but that’s usually what everyone gets excited about. I’m not dying or anything, which I already knew. The scan also sang the praises of my fatty liver, not enough to change the name of the blog, but enough. So next week I start weekly trips up to the health campus to try and diffuse the fatty liver situation through diet and exercise… these are the adventures of the gimpy colon…

Soldier on people!!!

The Suspense…

Goodness, it’s been a while…

Well I’m sick again and I’ve actually been kinda sick for a while. Less Crohn’s stuff and more of a cold, flu, schmutz feeling that has been going on for a good three weeks or so… and so I’ve have tests done and scheduled… blood came in, all is well there. My GP had to do battle with my insurance company for a CT scan and I’m waiting to hear as to when it has been scheduled. I had an ultrasound a few days ago because of pain in my stomach. I thought my spleen was exploding but turns out my pancreas, which if you didn’t know this already, has a head, a body and a tail… like my own little tadpole… well it turns out my pancreas head is way bigger than it should be. Not sure what that means exactly, but I’m hoping it’s the source of my pain, that it can be cured with another bottle of pills and/or something as simple as that. Of course, nothing is ever simple when you have a gimpy colon. I’m on day 5, I think, of antibiotics and my symptoms are pretty much the same.

Another thing I learned from the ultrasound is that I have a fatty liver… now THERE’S A SHOCKER… no not really… Unfortunately, or fortunately, however you want to look at it, a fatty liver or finding out you have a fatty liver is one of those things that can turn bad but can be reversed but once it’s progressed there’s no turning back…did you follow that? Now somehow, my liver is processing everything properly according to my bloodwork so it’s up to me to lay off the fatty foods and be good. I guess now that the holidays are over and lent is right around the corner, I might be able to pull something like that off. My GI PA said that people don’t die of fatty livers, they usually die of something else and she totally went meh on me. Can’t really say I’m scared straight if you catch me.

So I have a CT scan scheduled for Friday… as soon as I know something, I’ll throw it up on the blog and if it warrants a separate blog, then I’ll entertain new names… So far I have The Pesky Pancreas, My Big Fat Pancreas Head, and Finding Nemo… in the Head of a Pancreas…

Cheers!

The Thanksgiving Feast…

Happy Turkey Day everyone!!! I am at my brother’s house which is situated just west of Cleveland, Ohio. My whole immediate family is here and as usual, we are having a wonderful time. Currently, a group of us including Farmboy and most of the men in the house are preparing to make their way to the Rock and Roll Hall of Fame, a group is staying home to veg out.. and a group of us is preparing for some marathon shopping (I’m in the marathon shopping group).

Thanks to the wonders of Remicade, I was able to seriously enjoy Thanksgiving with no limitations. I technically have to lay off the gluten, however, there were a few instances in the past few weeks that because of my poor planning, I was forced to eat gluten. The first time I knowingly ate gluten, I sat in a chair and waited for some sort of horrible side effect, a headache, SOMETHING negative that would cause me to never touch gluten again. If you have ever read Elizabeth Hasslebeck’s book about Celiac disease, you know how horribly sick she (and many many people with Celiac disease) get when they have even the smallest amount of gluten. Well not me… I was fine… so fine in fact that I got a tad bit cocky about it.

I have yet to get horribly sick at all from anything I’ve eaten in the past few weeks, which includes fruits, vegetables, nuts, gluten… all the stuff that I wasn’t supposed to ever eat… ever again. So, I run around with a box of gluten-free Cinnamon Chex cereal (which if you are gluten-free, you should totally check out… it’s a great go-to meal if there is nothing else available to eat, true sustenance and pretty darn tasty).

I do have a few small self-discovered parameters I have to follow when I eat now or else I can feel the colon start to gimp out.

First and probably most importantly, I have to eat teeny meals… so I’ve basically turned into a grazer of sorts. That’s the way humans are supposed to eat, I’m told, so I guess that isn’t so weird. Last night I ate a plate of Thanksgiving goodness. There was no way I could handle dessert so I had to kind of skip it (except for the two cookies, but cookies hardly count as dessert… dessert is PIE or CAKE, just sayin…)

Second gluten needs to be worth it. If I eat gluten for any amount of time after I leave Cleveland, I should be shot. Most gimpy colons can actually feel food going through the system. I know when it hits my stomach, I know when it’s rockin’ the intestines. I have to be very in tune with the goings on in there and even though I haven’t been sick yet, I know the clock is ticking. I will go home and go back to gluten-free and I will look forward to the next special occasion where I can have gluten again… I know I’m pressing my luck.. but you haven’t had my sister-in-law’s stuffing… it’s totally stellar…

Third is actually exercise…I know, I know.. a lot of gimpy colons are totally exhausted most of the time, but I definitely feel a little better after a nice walk. Randal (dog) usually gets a walk out of me and I ALWAYS feel better… I didn’t get any exercise yesterday at all even though I kept meaning to get out there and go for a walk.. it just never happened and I feel like a slug. Today though, is the marathon shopping trip, so therefore, I should make up for yesterday with today. Plus, Randal is at the doggie spa probably being fed grapes and having a massage as we speak. So he probably wouldn’t want a walk anyway…I’m weird about my dog.

But enough of that. Today’s Glutie Award goes to all the good hosts of the world who ask gimpy colons how they can enhance their stays… my sister-in-law had gluten-free Cinnamon Chex cereal all set for me even though I dove head first into a bag of bagels my mom brought from New York. At least I know that it was there if the jig was ever up and I had to immediately revert back to totally gluten free in a jiffy.

To all of you good hosts… we salute you!!!

The Good News…

Yesterday morning I had my yearly colonoscopy at my GI doctor’s office annex thingy where they do all kinds of oscopies. I did the prep. The prep is always the worst part. Essentially I had to clear out my colon which by default means that I had to clear out my entire system. I couldn’t eat anything for the entire day before except clear stuff like broth (which got old so very fast) jello (which I didn’t have) and Gatorade which is delicious BUT not food.

I had to take four Dulcolax tablets and then dump a bottle of Miralax powder into 64 ounces of orange Gatorade. That part is fine. If you cut it up into 8 ounces every half hour, it’s very doable. I won’t go into being chained to the bathroom for most of the evening. Suffice to say, you probably can guess how the rest of that went. I’ve heard of people having to drink some kind of “stuff” that again has the deceiving picture of berries on it as though to trick the mind into believing it’s some sort of cocktail. Not true… don’t be fooled…

I was a little nervous because not taking any of my pain medications meant that I felt pain and so I thought that I was going to get bad news… I really wanted to stay on Remicade, as I’ve mentioned before. Farmboy and I talked about him learning how to give me shots if that was going to be the next thing, so I was ready for that possiblity

The next morning, we put the boy on the bus and head off to Gastroland. Gastroland is happily situated one floor above my regular GI’s office which makes it convenient and easy to remember. We check in, Farmboy has his Star Trek books, I have my busy bag. We wait. I am called to go in, the nurse has me sign off on any responsibility the doctor may have in goofing up the colonoscopy.. always a good time. I get my little cubby area, my bed, my gown that covers nothing and my super socks with the little treads. I get all the vitals taken, they start an IV. My beloved GI doctor comes in and we chat for a bit on how the year has gone. I give him my results from last year’s colonoscopy and he’s happy to get to compare the two for me. Fantastic bedside manner, this guy. Later an anesthesiologist comes in and asks me a few more thousand questions, and rolls me on into the room where the thermostat was set on “meat locker”. A few minutes later I go to the place Michael Jackson has been, but I get to return a mere 30 minutes or so later…

I get wheeled back to my cubby, Farmboy comes back in and starts his ginger ale, gluten-free chip job. The GI comes in, all smiles and says that I’ve had an amazing turn around. The colonoscopy from last year is angry and RED, RED, RED… this year’s is a happy inside the colon picture that I almost want to frame. The GI said the Remicade is working, everything we are doing is working. There was one area where I still had a bit of an ulcer and he wanted me to go on steroids to which I said NO!!!! (see prior posts with regard to all of that nonsense with the steroids…) He is fine with that and crosses the order off on the sheet.

The GI says I can have basically whatever I want that is gluten-free. I still have markers for Celiac both on the endoscopy and on my Prometheus test and chances are if I don’t have it now, I’ll end up with it. So anyway, I’m supposed to start really slow, eat one kind of fruit or vegetable or nut at a time, find out my triggers, don’t gorge (for those of you who know me really well, you know that’s a tough request!). I’m out of my mind happy. I feel like I just won the lottery.

I know from reading other blogs and message boards that sometimes these things are short-lived, that one stress can trigger a massive Crohn’s fail when I least expect it. I get that. I’m ok with that… I just really want to eat a pear right now…. And so I am… WOOT!!!!

Until next time people!

Cheers!

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!