The Genetics…

The title of this entry is more of a joke… why? Because another member of our family has been stricken with colitis… it’s really quite tragic…it’s my poor dog Randal.

Randal has been a member of our family for 2 years now. He’s a three year old Jackhound (not a real breed). He’s a Foxhound-Jack Russell mix. There is an actual hybrid called a Foxy Russell but I can’t say that without commenting on what a stupid hybrid breed name that is. So he’s a Jackhound.. lets just settle that.

Poor Randal was rescued from a puppy mill (or so the story goes). When we first brought him home, we knew that he had been confined for probably most or all of his life. When I took him for his first walk, it happened to be garbage day and he stopped and barked and every bag of garbage. He has attacked the lawn mower, the leaf blower and the vacuum cleaner. All while they were turned off and just sitting there. So suffice to say the pup had some issues. We’ve conquered a bunch of his issues, but one still remains… he has what all the dog experts call “fear aggression”. We currently have a trainer working on that with us which brings me to this colitis thing…

The trainer, we’ll call her Michelle… because that’s her name, wanted us to take Randal for a brisk walk for about an hour per day, keep him out of Farmboy’s and my bedroom, and work with him on keeping him occupied with dog games. Randal probably could handle Uno, but I think he’s frustrated because he doesn’t have any hands. Such as it is, we put his dog bed out in the hallway, and shut the door to the bedroom. He woke me up 7 times on Sunday night and 3 times last night, with scratches and little barks that he likes to do to gently wake people up. Randal is very considerate.

So yesterday, he started with the diarrhea, today, he was shivering and seemed to be warmer than he usually is and then the vomiting started so we called the vet, brought him in and TA-DA!!! Colitis…

So three medications and a new diet later, hopefully we’ll have a healthier more happy Randal. I know just how the poor guy feels. I asked the vet why he doesn’t get steroids for his colitis.. she said “oh steroids are murder on the body”… Really… huh… didn’t know that… she also said that the colitis might be triggered by the stress of the training and walks and stuff.. “you know… stress can trigger colitis” And so it goes…

Onward!

The Entocort Farewell…

Well, I had a crappy week last week. Tuesday was my last day of Entocort (another steroid that targets just one area of the colon) I hate, hate, hate what steroids do to me. This past Wednesday I woke up and basically sifted through this unbelievable fog. I managed to get the boy to camp somehow but then came home and ended up in bed sleeping… all day… and then I woke up and had the worst headache I’ve ever had in my life. If you Google “Crohn’s Disease” you’ll come up with a list of symptoms. I had all of those symptoms including a few that weren’t on the list like the desire to fling myself out the nearest window, if only I had the energy. Thursday was almost exactly the same. We called the GI doctor. His nurse said and I quote “that wasn’t supposed to happen”… always fun words to hear. Although, I don’t think I’ve had a typical run of this whole Crohn’s thing, I’m thinking going off the steroids has caused the most consternation with my buddies in the medical world… I’m sending my blog address to the writers of “House”. Perhaps Hugh Laurie can figure me out.

So sometime on Wednesday evening, I picked up my Droid and put a status on Facebook that said something the effect of “Worst Crohn’s fail ever… somebody please kill me”. That status caused more than several phone calls to my house and an almost completely stuffed e-mail inbox… sorry ‘bout that… I’ll try to keep the Droid away while I’m hallucinating. I totally dig the love though.

Anyway, Friday I was a bit better… Saturday I was even better, and that was mostly because my kid just discovered the game Uno and we played that basically all day. I still deal with nausea, I’m not sure where that came from. I basically made it through Sunday with nothing but a communion wafer (gluten free). Yesterday I woke up and ate an omelet with some meat and cheese in it… that went well. So I’m much better now. Today, I am Entocort-free and down to 3mg of prednisone… I haven’t measured my head lately, but I think it’s a little smaller… not in the African head shrinking kind of way, but in a less prednisone kind of way. My hair is still all over the floor though… May the Lord bless and keep those Merry Maids.

Be well everyone!

The Taper…

Well it’s official, I’m getting off all steroids once and for all!!! Woot!

I was already tapering off Prednisone at an incredibly slow rate, as in 1mg for every three weeks. I was set to be completely off Prednisone on August 29th… of this year…

Today on our usual walk to the coffee shop for our Tuesday lunch, we stopped by CVS Pharmacy to pick up a couple of prescriptions. Let me preface this by saying that my insurance ran out on May 31st and starts again on June 1st. We have health insurance through Farmboy’s business and it’s one of those high deductible health plans with a health savings account. Normally, healthy people should have these plans, and not freaks like myself, but after last year, I decided that doing one of those 80/20 plans would make me crazy. I have a $2,500.00 deductible and after that is paid, everything is covered. So last year I blew the deductible on one trip to the emergency room and everything after that was covered. Now we are starting again…

So I made sure that my last Remicade infusion took place on May 31st so it was completely covered (that is about $4,000 a pop)… today I’m in CVS looking at a 30 day supply of Entocort costing $1,400.00. Needless to say I wasn’t expecting that and wondered really quick whether or not I actually needed $1,400.00 worth of anything.

I ran home and called my GI doctor and asked him if this Entocort stuff was really worth anything.. I mean really… how about we try to taper off that stuff… I’m already walking around with $4,000.00 worth of nuclear waste (Remicade) in my body… why do we need to bother with this other stuff? He agreed and started the taper. I should be off of this stuff by the end of this month.

So now I’m on a taper off of the Prednisone and the Entocort. For those of you keeping score at home:

Prednisone – 4
Entocort – 2

Today’s Glutie award goes to CVS Pharmacy… nice pharmacy people, they know me by now and they are nice enough to say.. “Hey, you might want to call your doctor and see if you really need this stuff… it’s crazy expensive”

It’s nice to see them every Tuesday when I go and pick up my meds.

Cheers!

The Annoying Customer…

I’m feeling better! Thanks for asking!

I’ve been having some frustrations with some local eateries that are claiming to have gluten-free foods and have them, but it turns out for one reason or the other, the gluten free food they do have is also not Crohn’s friendly either. Hence, I have to ask a zillion questions and sometimes be really overly direct about the contents of every dish they might have.

Just to review, my diet consists of NOT having fresh fruits or vegetables, anything with gluten (which basically means no wheat) and very very little fiber and if I can help it, no fiber at all. Although some cooked vegetables do go through without notice by the gimpy colon. So far we have cooked potatoes (read: French fries). Apparently the French fry has some sort of paperwork that can be shown at the entrance to my stomach which allows proper digestion through the gimpy colon. I don’t know why potatoes work, but I’m not going to complain.

So anyway, for example, we were at a restaurant the other day (I won’t say the name, suffice the name rhymes with “Molive Marden”) and they have a gluten-free menu. I asked if they could make me a ziti with gluten free noodles and instead of the marinara sauce, could I have the Alfredo sauce and cheeses and yes, I’m aware that the Alfredo sauce probably had gluten in it but I was willing to take my chances being that it was the Friday before Mother’s day and I had a hankering for ziti.

So the waiter (nice guy) says that the gluten free pasta is already mixed up in a special bowl with marinara sauce. I said that I couldn’t have marinara sauce and so I ended up ordering a steak and mashed potatoes… my third steak and mashed potato order from a restaurant in a row.

So many minutes later (and we weren’t in a hurry or anything and quite frankly, Farmboy and I have a tendency to yak yak yak and lose track of time pretty easily), the waiter comes back and tells me that they had to throw my steak away because it was touching some vegetables so they were going to cook me another special steak and should he bring the other food out right now? I felt bad, because I obviously wasn’t clear about my situation, and made them waste a steak, but I wasn’t about to say “you know what? Dig that sucker out of the garbage.. I’ll have it anyway.” I’m not allergic to vegetables, I just can’t EAT them…

So a bit later, the manager came out, was very apologetic and told me that my steak would be comped and so was our dessert. Which is funny because I couldn’t eat anything on that dessert menu anyway, so Farmboy was happy. Good for him.

I haven’t run into anyone who isn’t completely annoyed with my questions (or appeared to be) but I’m starting to get really annoyed at myself and rather than attempt to go out somewhere, I just snap the cap off another Ensure and guzzle away.

Well that was fun… on to this week’s Glutie Award… and back to the restaurant rant… Anytime I go to a restaurant, I usually have to bring some kind of bread with me or else I will be stuck eating something like a hamburger without the bun, which unless you are one of those freak “anti-carb” people, is not a happy meal… luckily, there’s the Grainless Baker…

Where would I be without the Grainless Baker hamburger buns? They also have hot dog buns which I imagine taste similar to the hamburger buns… good stuff. I hear they also have French baguettes… which I am actually afraid to try since I dislike being teased.

So congratulations are in order to the Grainless Baker.. if you run into the Grainless Baker whoever he or she might be, give ‘em a high five for me…

Cheers!