Monday, June 8, 2009

You Can Stand Under My Umbrella

SO we're finally home. McStudly was discharged yesterday from the hospital and was super excited to finally sleep in his own bed, last night, next to his wonderful, amazing, totally awesome wife *cough cough*. And he missed his dog a little bit, too (understatement of the century). It was a very happy reunion, folks.


So the Doc "feels strongly" that it's Crohns' Disease. The biopsies from Friday's Colonoscopy came back "inconclusive", but she said that's not uncommon for Crohns' patients. There's one final test they are waiting on, and here's the thing: if it's negative, it won't rule out Crohns', but if it's positive, it'll pretty much point all fingers in that direction. Let's hope we just get some more answers. We don't like getting a "probably" diagnosis. We aren't the kind of people that just want "a" diagnosis... we'd rather get "the" diagnosis, even if it's "we don't have a clue", though that would totally suck.

I'm exhausted. I can hardly say he's exhausted, but he is tired of all the drama of this past week. Poor guy's got thoughts flying a mile-a-minute in that gorgeous skull of his... and so many questions.


The kicker? We have to decide by Friday is he's going to re-enlist. You see - he's been working tons of job leads for the past two months. Some have fallen, some have re-appeared, and some have been going strong. But a few of them needed him to get some information to him this past week... and then this happened. So we're kind've in limbo as to where they sit, and also if it even matters.

The thing we've learned about Crohns' is that it's pretty unpredictable, at best. You can have a mild to severe case, but it can change. So you may have a mild case this year and then next year it's severe. Or, you can go into remission and not have a relapse for 30 years. So... we're still learning. Our biggest concern is it's impact on employment. We've read that it can make a difference in some areas. Depending on how severe of a case it is, of course. And the 10 pills he's currently taking a day (which is supposed to be 18, if they can figure out how he can take this other medicine... we'll get to that later) for a mild case of Crohns' disease would be WAY expensive without Tri-Care covering it. Not to mention what could happen in a normal job if he has a flare-up like this one, where he was in the hospital for 5 days.

It seems that re-enlisting is the most reasonable option. And it's not awful, just not necessarily what McStudly wanted to do. And I want him to be happy - cause when McStudly's happy, I'm happy... and Austin McDog is pretty easy to please either way, but it still helps.


The worst part, at least for the next 3 weeks, is the pills. McStudly has NEVER been able to take pills. NE-VER! Since he was a child. His father even put him in the bathroom, once, and told him he couldn't come out until he swallowed them. He sat in there for hours. It didn't happen. McStudly was sad. But that means that now - we have to buy everything in Chewable or liquid form. And I guess they don't make Flagyl in an orange flavored, chewable tablet... or any of his other meds, for that matter. So we have to crush them all up in applesauce or Chocolate pudding. We may try oatmeal, too, but that's still up in the air.

The Doctor prescribed something called Pentasa, which is a common Crohns' medication. The problem? It's an Extended Release (ER) tablet and, well, he can't take pills! Crushing an ER tablet just makes the whole "timed release" aspect null and void. In all fairness to the Doc, she didn't know he can't take pills. In all fairness to us, if she had given us more than a split-friggin-second of her TIME then we could've TOLD her!! (different rant for a different post, I suppose...) So we talked to the Physicians' Assistant (PA) - who was AWESOME,by the way - and she did what she could, but wasn't able to find another form of the medicine. So she recommended we talk to the Pharmacist about similar meds that may work. Well, he came up with another ER tablet (super helpful, sir!) and one non-ER tablet (hooray!) which we called the PA back about... etc, etc.

So the Doc just decided she wanted to call the people who make Pentasa and see if it would be alright for McStudly to just spill the contents of the pill and take it that way... obviously making it no-longer ER, but still giving him the meds. Once we hear back on that one, we'll be adding at least 8 more pills to the daily mix, and possibly more - because he has to take 1000mg 4 times a day, so it'll just depend on what dosage they give him.


Whew! That's a lot! We're still considering getting a second opinion, but that would be the military, so it may not even be worth it... then again, the guy he saw last time was pretty good, so it may not be bad after-all.


So - question for all you mil-wives out there: any idea how/if Crohns' can affect eligibility for enlistment? Or if he'll be deployable? We're pretty sure an auto-immune disease would make some kind of impact, but we're hoping not, if it's under control by meds, etc.

Anywho, prayers are greatly appreciated. Thoughts are pretty much just as good, and encouragement would be wonderful! McStudly went from being completely healthy - never sick a day in his LIFE (literally, I believe) to now having a disease that will be with him for the rest of his life. It's life-changing, for him. Not that he felt invincible before, but it's kind've a wake-up call to someone who's taken advantage of their health for so long... maybe even a reminder to those of you who are doing the same?



Well, I want to thank all of you for your warm encouraging comments and your help (Kristin - THANKS for the advice about the C. Diff diagnosis!!). You've been so great to us and we appreciate all of your support. Now - hopefully we'll be able to have some more upbeat posts in the near future, instead of this depressing medical drama.

I'll leave you with the lyrics to a very well-known song that's been in my head for the past week. I think it sums up an aspect marriage the that it's supposed to be, and I love it - so far every version I've heard is great, but the version I like right now is actually Mandy Moore's mellow-er version (hang in there... it gets good in the middle). Check it out if you get the chance - it's NOT the original, not even close, but it's pretty awesome. Anyways, here are the lyrics:


"You have my heart
And we'll never be worlds apart
Maybe in magazines
But you'll still be my star
Baby cause in the dark
Who can see shiny cars
That's when you need me there
With you I'll always share
Because...

When the sun shines We'll shine together
Told you I'll be here forever
Said I'd always be your friend
Took an oath I'mma stick it out 'till the end
Now that it's raining more than ever
Told you we'll still have each other
You can stand under my Umbrella
You can stand under my Umbrella (Ella ella eh eh)
Under my umbrella (Ella eh eh)

These fancy things
Will never come in between
You're my entity
Here for Infinity
When the war has took it's part
When the world has dealt it's cards
If the hand is hard
Together we'll mend your heart
Because...

When the sun shines We'll shine together
Told you I'll be here forever
Said I'd always be your friend
Took an oath I'mma stick it out 'till the end
Now that it's raining more than ever
Told you we'll still have each other
You can stand under my Umbrella
You can stand under my Umbrella (Ella ella eh eh)
Under my umbrella (Ella ella eh eh)

Under my umbrella (Ella ella eh eh)
Under my umbrella

You can run into my Arms
That's okay don't be alarmed
Come into Me
There's no distance in between our love
Gonna let the rain pour
I'll be all you need and more ooohh
Because...

When the sun shines We'll shine together
Told you I'll be here forever
Said I'll always be your friend
I Took an oath I'mma stick it out 'till the end
Now that it's raining more than ever
Told you we still have each other
You can stand under my Umbrella
You can stand under my Umbrella (Ella ella eh eh eh)
Under my umbrella (Ella ella eh eh eh)
Under my umbrella (Ella ella eh eh eh)
Under my umbrella (Ella ella eh eh eh)

It's raining (raining)
Ooo baby it's raining (raining)
Come into me
Come into me
It's raining (raining)
Ooo baby it's raining (raining)
Come into me
Come into me"



I love you, baby! Forever and ever. 143

Toodles!

~~~~~~~~~~~~~~~~~

PS: I really am going to send out those Pay-It-Forward gifts. Things have been a tad-bit crazy, lately. I hope you can understand!!

9 comments:

The Mrs. said...

Well, everything is wavierable under the right circumstances. Flyboy has a stack of waviers in his file! I havent a clue about CD specifically, I'd imagine they have to take into account the severity, the flare ups, and the controllability of it. I'm pretty sure in the MC they let you stay in to serve out your contract if your nondeployable, but you can't reenlist. But then again, what do I know. Good luck!

Lindsey said...

Good luck friend! Hugs and prayers!

April E. :) said...

That's alot...but I know you guys will come up with the best plan for the two of you. We are praying for you and I am sure the information will start to fall into place soon...we should hope right?!! Let us know if you need anything.

d.a.r. said...

Well, my husband is a hair away from being legally blind and he got a waiver to commission, so I'd say that it really depends :) I'm sorry you guys are going through all of this right now. What a disaster. Hopefully you get a conclusive diagnosis and some sort of security with the job situation. Tricare and free medical care are pretty persuasive, huh?

Anonymous said...

Yikes, I've been sorta absent in reading blogs and came back to THIS! SO sorry to hear it about McStudly!I hope he is feeling better!

Kelly said...

I'm glad that he is home with you and the dog. I will keep praying and thinking good things and I hope you can figure out the best options for your family. Sending hugs!

Lindsay Gray said...

waivers are an Airman's best friend! As The Mrs. said, you can get one for just about anything these days and I DO mean ANYTHING. You can get a waiver for being fat. WHAT? I mean, people can actually help that!

Anywho, I'll be praying for you. And THANK GOD for Tri-care! Everything will work out the way it is supposed to. God has a plan!

Courtney said...

Aw you're being so strong! It's awesome how supportive you are- that's just what he needs! Praying for you guys!

Kristen said...

Is the Pentasa a pill or capsule. If it is a pill, I'd say see about getting the capsule. Honestly, I don't see why he couldn't split the Pentasa capsule and take the beads in applesauce. With Pentasa capsules it is the beads inside the capsule that are extended release and not the capsule itself. It is listed in the package insert that the beads inside the capsule are the ones that are coated. The doctor or pharmacist should definitely call the company and double check, but as long as it is correct that it is the beads that are coated, and they aren't crushed, it shouldn't be a problem. I know of other drugs for other disease states that have the same method of delivery that can be opened like that. It is definitely important to maintain that coating on the beads so that the drug will actually be active in the intestines and provide the maximum amount of anti-inflammatory action. If you want you can go to the Pentasa website and click on the prescribing information. The very last paragraph talks about the controlled release beads. Show that to the Doctor and see what he/she thinks. If it comes down to it, you can always see about having a pharmacy compound it or there is a suppository option called Canasa, but that is for more rectal symptoms than intestinal. So in short, definitely contact the manufacturer to double check, but I think it will be ok. If it isn't, there are still other options. Let me know if they say that it isn't though. That was a seriously long comment, so let me know if you have any questions or anything. I'm not officially a pharmacist yet, but I do have a PharmD.